PROJECT REPORT. Approved by: WW Rehabilitative Care Council. May 12, 2015

Transcription

1 ACQUIRED BRAIN INJURY (ABI) STREAM OF CARE: Creating a Fully Coordinated and Seamless Health Care Experience for Residents of Waterloo Wellington with Acquired Brain Injury PROJECT REPORT Approved by: WW Rehabilitative Care Council May 12, 2015 Author: Karen Conway Acquired Brain Injury System Integration Analyst Traverse Independence TARGETED REHABILITATIVE CARE PATHWAY DEVELOPMENT PROJECT ABI

2 TABLE OF CONTENTS Acknowledgements 5 Executive Summary 6 Background 10 Objectives..11 Acquired Brain Injury Model of Rehabilitative Care.11 Project Methodology.13 Guiding Principles.15 Data Analysis 15 Waterloo Wellington ABI Service Inventory..17 Integrated ABI Rehabilitative Care Pathway.19 Gap Analysis.20 Recommendations..21 ABI Steering Committee Work Plan Overview (Fiscal Year ).26 Conclusion.27 Appendix A: Waterloo Wellington ABI Steering Committee Membership..28 Appendix B: Waterloo Wellington ABI Steering Committee Terms of Reference..29 Appendix C: Guiding Principles for Waterloo Wellington ABI Integrated System Planning.32 Appendix D: Baseline Data Report 33 Appendix E: Inventory of Waterloo Wellington Publicly Funded/Not for Profit ABI Services.48 Appendix F: Adult Acquired Brain Injury Stream of Care Integrated Care Pathway (Narrative) 72 Appendix G: Adult Acquired Brain Injury Stream of Care Integrated Care Pathway (Graphic)..87 Appendix H: Waterloo Wellington Adult ABI Integrated Care Pathway Gap Analysis Template P a g e

3 Appendix I: Attendees List, February 26, 2015 Consultation Day..97 Appendix J: Consultation Day Case Studies 98 Appendix K: Completed Gap Analysis.103 Appendix L: Consultation Day Working Group Priorities..115 Appendix M: Draft Dashboard.116 Appendix N: Project Newsletters 122 References P a g e

4 VERSION CONTROL Version Date Status Author Reviewed By Summary of Changes V /03/15 Draft K. Conway ABI Steering Committee V /05/15 Draft K. Conway Rehab. Care Council (RCC) Approved for submission to Rehab Care Council with changes to work plan. Approved with insertion of updated Dashboard Information and Work plan Vo.03 08/05/15 Final T. Harris RCC Insertion of Dashboard and Work plan Final Approved Report V /05/15 Final K. Conway Correction to page numbers 4 P a g e

5 ACKNOWLEDGEMENTS This project is reflective of the commitment of health care providers within the Waterloo Wellington Region to work collaboratively to design integrated systems of care for our residents that are built on current evidence-based best practices. The hard work, dedication, and support of the ABI Steering Committee (Appendix A) and a number of clinicians who are providing services for the survivors of acquired brain injury (Appendix I) are evident in the outcomes of this project. "Alone we can do so little; together we can do so much." - Helen Keller 5 P a g e

6 EXECUTIVE SUMMARY Vision: A fully coordinated and seamless health care experience for the residents of Waterloo Wellington who have survived a brain injury from the point of acute injury, through rehabilitation, and into the community. Background: Acquired brain injuries result from both non-traumatic and traumatic causes and are a leading cause of morbidity and mortality worldwide 1. It is estimated that there are over 18,000 brain injuries annually in Ontario 2. Within the Waterloo Wellington Local Health Integration Network (WWLHIN), it is further estimated that that there are 1,240 reported injuries annually 3. Acquired brain injuries have the potential of causing profound and debilitating impairments as a result of physical, cognitive, behavioural, and psychosocial changes. Consequently, survivors of acquired brain injury (ABI) require a comprehensive system of care that extends beyond acute care, through to post-acute rehabilitation, and into the community. On the heels of a review of the rehabilitative care system in Waterloo Wellington in that resulted in extensive work to design integrated cross continuum rehabilitative care pathways for other diagnoses, a new acquired brain injury stream of care was identified. With the leadership of Traverse Independence, a local provider of community-based acquired brain injury services, the Acquired Brain Injury Steering Committee secured time-limited project management dollars from the WWLHIN. Objectives: Within the months of January through March 2015, the project was expected to deliver the following: an understanding of the current state of publicly funded adult ABI services in Waterloo Wellington the identification of specific best practices and standards of care for adult ABI rehabilitation within Waterloo Wellington 1,2 Sarah Munce et al. Systems Analysis of Community and Health Services for Acquired Brain Injury in Ontario, Canada, Ontario ABI Dataset Project. 4 WWLHIN Rehabilitation Services Review, Transitioning to a System of Rehabilitative Care in Waterloo-Wellington Final Report of the Rehabilitation Review Committee to the WWLHIN, P a g e

7 a clinical pathway that supports integrated and seamless transitions across the continuum of care Methodology: The ABI Steering Committee has adopted a planning framework (Figure 2) that was previously developed by the Toronto ABI Network 5. This project includes the following elements: Guiding principles Literature search to identify current evidence-based ABI rehabilitation practices Collection of available data Inventory of existing ABI services Design of an integrated rehabilitative care pathway for adult ABI Design and completion of a gap analysis of recommended ABI rehabilitation best practices Communication and consultation with stakeholders that included representation from a consumer, primary care, acute care, hospital-based rehabilitation, community-based rehabilitation, community support services, mental health and addictions Identification of recommendations and a work plan based on the feedback received from stakeholder consultation Guiding Principles: The guiding principles (Appendix C) established by the ABI Steering Committee reflect an emphasis on patient and family centeredness, responsiveness, accessibility, comprehensiveness, coordination, flexibility, accountability, and evidence-based practice. Data Review: ABI is more common than breast cancer, HIV/AIDS, spinal cord injury, and multiple sclerosis combined 6. Yet the challenges associated with collecting and interpreting ABI data within Ontario is well documented. Brain injury is often undiagnosed or misdiagnosed, particularly in the early stages of recovery 7. The Ontario ABI Database Project 8 reported that the rate of ABI (not including stroke) in Waterloo Wellington was 1.6 per This translates to an estimate of 1,240 reported injuries per year. There is no current rate available to estimate prevalence. An analysis of non-stroke ABI utilization in WWLHIN acute and post-acute hospital settings from fiscal year 2011 to 2013 (Appendix D) suggests the following: Increased emergency department utilization 5 Toronto Acquired Brain Injury Network, A Framework for the Future Planning of Publicly Funded Acquired Brain Injury Services in Toronto, March Ontario Neurotrauma Foundation, Acquired Brain Injury by Local Health Integration Network in Ontario: Waterloo Wellington, Toronto Acquired Brain Injury Network, A Framework for the Future Planning of Publicly Funded Acquired Brain Injury Services in Toronto, March Ontario ABI Dataset Project, 7 P a g e

8 Increased acute inpatient bed utilization Increased inpatient rehabilitation utilization Increased functional impairment amongst ABI patients admitted to inpatient rehabilitation Increased efficiency with inpatient rehabilitation lengths of stay Increased discharges home from inpatient rehabilitation Increased complex continuing care utilization Inventory of Existing ABI Services: Publicly funded care providers within Waterloo Wellington have worked to establish a considerably broad collection of specialized services for adults living with ABI (Table 1). While resources are limited and waitlists exist for most services, it is recognized that it is important to leverage what is currently available to ensure that access to care is optimized within reason. Tertiary ABI rehabilitation is also available in Hamilton for those survivors who have needs that are unable to be met locally. Additional information for each of these services is available in Appendix E. Integrated Care Pathway and Gap Analysis: A narrative (Appendix F) and graphic (Appendix G) rehabilitative care pathway for adults with ABI was developed using established best practices identified from a literature search. In tandem, a gap analysis tool (Appendix H) containing all of the recommended rehabilitative care practices was designed. A consultation day was held with participation from ABI service providers (Appendix I) representing consumer, acute, rehabilitation, primary care, and community support perspectives. During the consultation day, participants completed the gap analysis and used case studies to validate the care pathway. Recommendations: Using the results of the gap analysis and consultation with ABI service providers, the ABI Steering committee identified the following recommendations that have been incorporated into a work plan for fiscal year 2015/2016: 1. Design a Single Point of Access for ABI Service within Waterloo Wellington (FY 2015) 2. Design a Patient Navigation Role (FY 2016) 3. Design a Quality Improvement Project to Smooth Patient Transitions between Hamilton Health Sciences ABI Program and WWLHIN Service Providers (FY 2015) 4. Design an Integrated Community-Based ABI Rehabilitation Team (FY 2016/17) 5. Engagement with Mental Health and Addictions Services (FY 2015) 8 P a g e 6. Design a Single Point of Access for ABI Service within Waterloo Wellington (FY 2015) 7. Design a Patient Navigation Role (FY 2016)

9 6. Implementation of the Care Pathway (FY 2015 and Ongoing) 7. Build Capacity for ABI Specialized Rehabilitation Knowledge and Skills (FY 2015 and Ongoing) 8. Implement a Quarterly Dashboard (FY 2015 and Ongoing) 9. Implement a Communication Strategy (FY 2015 and Ongoing) BACKGROUND 10. Implementation of the Care Pathway (FY 2015 and Ongoing) 11. Build Capacity for ABI Specialized Rehabilitation Knowledge and Skills (FY 2015 and Ongoing) 12. Implement a Quarterly Dashboard (FY 2015 and Ongoing) 13. Implement a Communication Strategy (FY 2015 and Ongoing) BACKGROUND BACKGROUND 14. Implementation of the Care Pathway (FY 2015 and Ongoing) 15. Build Capacity for ABI Specialized Rehabilitation Knowledge and Skills (FY 2015 and Ongoing) 16. Implement a Quarterly Dashboard (FY 2015 and Ongoing) 17. Implement a Communication Strategy (FY 2015 and Ongoing) 9 P BACKGROUND a g e 18. Implementation of the Care Pathway (FY 2015 and Ongoing) 19. Build Capacity for ABI Specialized Rehabilitation Knowledge and Skills (FY 2015 and Ongoing)

10 BACKGROUND The transformation of the rehabilitative care system within the Waterloo Wellington Local Health Integration Network (WWLHIN) has been well underway following the completion of a comprehensive review in This review highlighted three areas for improvement: 1. Inconsistent access to standardized care and best practices for rehabilitative care across the Waterloo Wellington area. 2. A perceived lack of rehab services and capacity in the community to manage the complex needs of patients. 3. A lack of integration between health service providers that compromises our patients recovery process when transitioning between care settings. One of the outcomes of this review was the identification of four streams of care (Figure 1): Cardiopulmonary, Musculoskeletal, Frail Elderly/Medically Complex, and Stroke/Neurology. Each stream was assigned the responsibility to develop and implement an integrated rehabilitative care pathway that was intended in part to address the gaps in the system. A fifth stream of care, Acquired Brain Injury (ABI), was added in late 2014 and leadership for the development of this stream was assigned to Traverse Independence. Traverse Independence is a local provider of specialized community support services for adults living with acquired brain injury. Figure 1: Waterloo Wellington Rehabilitative Care Program Leadership Structure 9 WWLHIN Rehabilitation Services Review, Transitioning to a System of Rehabilitative Care in Waterloo-Wellington Final Report of the Rehabilitation Review Committee to the WWLHIN, P a g e

11 Through the leadership of Traverse Independence, the existing ABI Steering Committee (Appendix A) has reinforced their commitment to work towards a vision of a fully coordinated and seamless health care experience for the residents of Waterloo Wellington who have survived a brain injury from the point of acute injury, through rehabilitation and into the community. This vision for an integrated system of care had been previously described in the Waterloo Wellington Integrated Acquired Brain Injury Service System Overview 10 (January, 2011). Recognizing the need to secure dedicated project support for this work, the ABI Steering Committee delivered a proposal to the WWLHIN for time limited funding. This proposal was approved in December OBJECTIVES Within a timeline from January through March 2015, the project was expected to provide: an understanding of the current state of publicly funded adult ABI services in Waterloo Wellington the identification of specific best practices and standards of care for adult ABI rehabilitation within Waterloo Wellington a clinical pathway that supports integrated and seamless transitions across the continuum of care The target population for this project is adults with ABI and publicly funded ABI services. The project was not intended to: recommend the location of ABI services; include the development of specialist ABI services for pediatric cases (less than 18 years of age); or the implementation of the care pathway. ACQUIRED BRAIN INJURY MODEL OF REHABILITATIVE CARE Acquired brain injury is defined as: Damage to the brain that occurs after birth and is not related to a congenital disorder, developmental disability, or process that progressively damages the brain (e.g. Alzheimer s disease, Multiple Sclerosis, Amyotrophic Lateral Sclerosis) 11 Further to this definition, ABI is typically described using two broad categories, traumatic brain injury (TBI) and non-traumatic brain injury (ntbi). A TBI is damage to the brain that occurs after birth as a 10 ABI Working Group, Waterloo Wellington Integrated Acquired Brain Injury Service System Overview, January, Toronto ABI Network, A Framework for the Future Planning of Publicly Funded ABI Services in Toronto, March P a g e

12 result of an external force (e.g. a fall, motor vehicle accident, assault) 12. A ntbi may result from damage to the brain as a result of metabolic disruption (e.g. hypoglycemia), hypoxia (e.g. oxygen loss due to cardiac arrest), space occupying lesion (e.g. tumor, cyst), toxins (e.g. lead, mercury, carbon monoxide), and illness (e.g. meningitis, encephalitis). Of note, is that while stroke is an acquired brain injury, this project largely focuses on the design of a system of care for non-stroke ABI survivors. There has been substantial work completed locally to develop a system of care for stroke survivors using current best practices. While it is expected that these two care pathways will remain distinct, it is understood that it is important that we actively leverage resources across either system or streams of care. An ABI may result in physical, cognitive, emotional, and/or behavioural disabilities depending on the location, nature, and severity of the injury 13. The experience of survivors of ABI varies widely and is often reflective of whether their injury is classified as mild, moderate, or severe (catastrophic). An individual with a mild brain injury (e.g. concussion) may not even seek medical attention immediately if at all. Consequently, early identification and linkages to rehabilitative care can be significantly compromised. In contrast, an individual with a severe brain injury may experience an extended stay within a hospital setting with challenges associated with navigating numerous transitions between care providers across the health care system. The Evidence-Based Review of Moderate to Severe Acquired Brain Injury 14 has highlighted that consensus on optimal models of care for ABI has yet to be achieved. It is, however, generally accepted that there are four components or stages of brain injury rehabilitation: 1. Acute Care 2. Post-Acute Rehabilitation 3. Community-Based Rehabilitation 4. Longer Term Community Support The National clinical guidelines for brain injury rehabilitation developed in Britain 15 describes a slinky model (Figure 2) that highlights the importance of designing a system of care that allows for flexibility and seamless transitions as an individual moves across the continuum of services and towards improved function. 12 ABI Working Group, Waterloo Wellington Integrated Acquired Brain Injury Service System Overview, Toronto ABI Network, A Framework for the Future Planning of Publicly Funded ABI Services in Toronto, March Nora Cullen et al., Module 3: Efficacy and Models of Care Following an Acquired Brain Injury, Evidence-Based Review of Moderate to Severe Acquired Brain Injury, August British Society of Rehabilitation Medicine & Royal College of Physicians. Rehabilitation Following Acquired Brain Injury, National Clinical Guidelines, P a g e

13 Figure 2: The Slinky Model of the Phases of Rehabilitation PROJECT METHODOLOGY The ABI Steering Committee met weekly for three months and adopted a planning framework (Figure 3) that was previously developed by the Toronto ABI Network 16. With this framework in hand, the committee designed an approach to this project that included the following elements that are described within this report: Guiding principles Literature search to identify current evidence-based ABI rehabilitation practices Collection of available data Inventory of existing ABI services Design of an integrated rehabilitative care pathway for adult ABI Design and completion of a gap analysis of recommended ABI rehabilitation best practices Communication and consultation with stakeholders that included representation from a consumer, primary care, acute care, hospital-based rehabilitation, community-based rehabilitation, community support services, mental health and addictions Identification of recommendations and a work plan based on the feedback received from stakeholder consultation 16 Toronto Acquired Brain Injury Network, A Framework for the Future Planning of Publicly Funded Acquired Brain Injury Services in Toronto, March P a g e

14 While not every element of the planning framework could be included in this time-limited project, the framework itself provides direction to the ABI Steering Committee that can be used to develop future work plans. Figure 3: adapted from Toronto ABI Network. A Framework for Effective Planning of ABI Services (2006) 14 P a g e

15 GUIDING PRINCIPLES In their effort to design an integrated rehabilitative care pathway for Waterloo Wellington, the ABI Steering Committee has reaffirmed guiding principles that were established during a previous planning project (Appendix C). These principles place an emphasis on patient and family centeredness, responsiveness, accessibility, comprehensiveness, coordination, flexibility, accountability, and evidencebased practice. DATA ANALYSIS ABI is more common than breast cancer, HIV/AIDS, spinal cord injury, and multiple sclerosis combined 17. Yet the challenges associated with collecting and interpreting ABI data within Ontario is well documented. As a consequence of its complexity and the diversity of symptoms, brain injury is often undiagnosed or misdiagnosed, particularly in the early stages of recovery 18. Where mild injuries are frequently unreported, ABI data has typically been limited to hospital admissions. In an effort to address this data challenge, the Ontario ABI Database Project 19 was initiated in 2008 to collate and analyze ABI data that was available in the National Ambulatory Care Reporting System (NACRS), the Discharge Abstract Dataset (DAD) and the National Rehabilitation Reporting System (NRS). While limited to data from fiscal years 2003/2004 to 2009/2010, this project reported that the rate of ABI (not including stroke) in Waterloo Wellington was 1.6 per This translates to an estimate of 1,240 reported injuries per year. In order to obtain a current understanding of non-stroke ABI utilization in acute and post-acute hospital settings, a report was requested from the Waterloo Wellington Health System Decision Support Centre (Appendix D) that includes data from the last three fiscal years ( ). There were four sources for the data: the Discharge Abstract Database (DAD); the National Ambulatory Care Reporting System (NACRS); the National Rehabilitation Reporting System (NRS); and the Complex Continuing Care Reporting System (CCRS). The non-stroke ABI population was defined as patients 18 years of age or older who were coded as having a most responsible diagnosis of ABI as previously defined in the Ontario ABI dataset project 19 or subarachnoid haemorrhage (which is not included in the Stroke QBP definition). 17 Ontario Neurotrauma Foundation, Acquired Brain Injury by Local Health Integration Network in Ontario: Waterloo Wellington, Toronto Acquired Brain Injury Network, A Framework for the Future Planning of Publicly Funded Acquired Brain Injury Services in Toronto, March Ontario ABI Dataset Project, 15 P a g e

16 WWLHIN ACUTE HOSPITAL UTILIZATION Increased Emergency Department Utilization Emergency department (ED) visits for ABI increased by 34% between 2011 and 2013 (Table 1: Appendix D), totalling 1,639 visits in Fiscal Year (FY) While the volumes across CTAS Levels I-IV increased annually, the most significant increases were within CTAS III (Urgent) and IV (Less Urgent). The majority of patients (63% - 66%) were discharged home from the ED with no formal supports (Table 2: Appendix D). Despite the increased utilization of the ED, the percentage of patients requiring admission to an acute bed has remained fairly steady between 31% and 34%. It is possible that the increase in media attention related to concussion management has influenced the public s decision to seek emergent medical attention following a suspected brain injury. Increased Acute Inpatient Bed Utilization The number of discharges from acute inpatient beds has increased by 29% over the last three fiscal years with a 49% increase in total patient days (Table 3: Appendix D). An equivalent of 13 acute beds was used in FY Alternate care days in FY 2013 comprised close to a quarter of the total patient days (Table 5: Appendix D), suggesting that there may be an opportunity to improve the wait time for a patient to move to their intended discharge destination. Patients are most frequently discharged home with or without supports (50%) followed by close to 20% of patients being admitted to another acute hospital (Table 4: Appendix D). The remaining patients die or are transferred to other destinations that include rehab, complex continuing care, long term care, or a psychiatric facility. WWLHIN INPATIENT REHABILITATION UTILIZATION Increased Inpatient Rehabilitation Utilization Consistent with the higher number of ABI patients in acute care, the number of admissions to inpatient rehabilitation beds within the WWLHIN increased by 31% between FY 2011 and 2013 (Table 7: Appendix D) with a 41% increase in total patient days (Table 8: Appendix D). In FY 2013, the equivalent of 6.37 (Table 8: Appendix C) rehabilitation beds were used for ABI. Increased Functional Impairment The Functional Independence Measure (FIM) is a standardized clinical assessment tool that assesses physical and cognitive disability in terms of burden of care. This tool is completed at admission and discharge in inpatient rehab units. The data indicates that between FY 2011 and 2013, the level of functional impairment or disability in the ABI patients admitted to rehab increased as indicated by a lower FIM score (Table 10: Appendix D). This suggests that inpatient rehabilitation is in fact being accessed by ABI survivors who are living with greater levels of disability and complexity. It also suggests that individuals who have less disability are being served to a greater extent in outpatient and community-based services rather than bedded levels of care. 16 P a g e

17 Increased Efficiency The efficiency of an inpatient rehabilitation admission is measured using the FIM Efficiency indicator that divides the total change in a patient`s function (as measured using the FIM) by the total length of stay. Essentially, a good outcome is one where a patient achieves a FIM Efficiency of 1.0, indicating an improvement of one point in the FIM per day of admission. In FY 2013, the average FIM Efficiency for ABI patients within WWLHIN rehab beds was 1.29 compared to 0.88 in FY 2012 (Table 11: Appendix D). The growth in demand for inpatient rehabilitation beds may incent clinicians to achieve improved lengths of stay in order to enable timely access for the patients on waitlists. Increased Discharges Home 35% of ABI patients were discharged home in FY 2013 compared to 28% in FY 2012 (Table 15: Appendix D). At the same time, 3% of ABI patients were discharged to long term care in FY 2013 compared to 5% in FY A local effort to embed the Home First philosophy into clinical practice appears to have influenced the teams success in discharging patients home. A continued focus on increasing the number of discharges home appears to be an important priority going forward. WWLHIN INPATIENT COMPLEX CONTINUING CARE UTILIZATION Complex Continuing Care (CCC) provides programming to ABI patients that include a slower paced rehabilitative care (Restorative Care), complex medical care for those patients who have needs that are unable to be met in any other setting, and palliative care. Increased Complex Continuing Care Utilization The total number of ABI patients admitted to CCC increased 9% between FY 2011 and 2013 (Table 12: Appendix D). In terms of the total patient days, St. Joseph s Health Centre in Guelph appears to have discharged a small number of patients with a long length of stay in FY 2013 (seven patients with an average length of stay of days) (Tables 13, 14: Appendix D). This small cohort of discharged patients has inflated the total patient days for the Region and caution is required when interpreting these indicators. WATERLOO WELLINGTON ABI SERVICE INVENTORY Publicly funded and not-for-profit care providers within Waterloo Wellington have worked to establish a considerably broad collection of specialized services for adults living with ABI (Table 1). While resources are limited and waitlists exist for most services, it is recognized that it is important to leverage what is currently available to ensure that access to care is optimized within reason. Additional information for each of these services is available in Appendix E. 17 P a g e

18 Tertiary ABI rehabilitation services are available in Hamilton for those individuals who have needs that cannot be met locally. These services are located at Hamilton Health Sciences Centre and include inpatient neurobehavioural, inpatient community re-integration, inpatient slow to recover, outreach, and outpatient assessment clinic. Waitlists are typically long for these services and it is not unusual for Waterloo Wellington patients to wait in the hospital or local community before accessing a bed or clinic appointment. Phase of Rehabilitation Post-Acute Community Based Long Term Community Support Service Role Location Spaces Waitlist Inpatient Rehabilitation Outpatient Rehabilitation Home-based Rehabilitation Specialized ABI Assessment and Consultation ABI Outreach ABI Transitional Living ABI Day Program Slow to Recover ABI Group Home Caregiver Support Group Vocational Program Lidz on Kidz Intensive, goal-oriented rehabilitation for individuals who require medical and nursing care that cannot be provided at home or in the community. Short-term intensive, goaloriented rehabilitation Limited specialist consultation coordinated by a nurse practitioner to include consultations with OT/PT/SLP, certified behaviour therapist, functional vision optometrist, neuropsychiatrist as needed. Short-term outreach to support the achievement of specific goals related to independent community living (e.g. transportation, budgeting, grocery shopping). A 12 week assessment followed by a two year length of stay in an apartment setting to establish living skills necessary to achieve independent community living. Social and recreation programming designed to optimize physical, emotional, cognitive and social function. Shared living facility that promotes independence and community integration. Support, Advocacy, Education Cambridge Memorial Hospital Grand River Hospital St. Joseph's Health Centre Grand River Hospital St. Joseph's Health Centre Community Care Access Centre Kitchener Downtown Community Health Centre 8 beds 15 beds 15 beds Not capped 5 Months Traverse Independence months Traverse Independence 16 6 months St. Joseph's Health Centre 18 3 months Traverse Independence 114 Traverse Independence 6 Waterloo Wellington Brain Injury Association NA Variable Variable (dependent on demand) Variable (dependent on demand and prioritization of need) 0 for Opportunity Centre, 2 for Beginnings (Adults 55+) Lengthy, this is a permanent home for the residents Variable Table 1: Waterloo Wellington ABI Services Overview 18 P a g e

19 AN INTEGRATED ABI REHABILITATIVE CARE PATHWAY An integrated care pathway (ICP) is defined as a: multidisciplinary outline of anticipated care, placed in an appropriate timeframe, to help a patient with a specific condition or set of symptoms move progressively through a clinical experience to positive outcomes 20 ICPs are generally reflective of locally-agreed, multidisciplinary practice that is based on available guidelines and evidence 21. Consequently, they are intended to reduce unnecessary variation in practice and patient outcomes while supporting the development of collaborative partnerships between care providers 22. Consistent with the other four streams of rehabilitative care, a key deliverable of this project was the design of an integrated care pathway for adult survivors of ABI. In order to develop the pathway, a literature search was completed to identify evidence-based best practices. Four key reference documents emerged as primary sources of information: ABIKUS Evidence Based Recommendations for Rehabilitation of Moderate to Severe Acquired Brain Injury, 2007 Evidence-Based Review of Moderate to Severe Acquired Brain Injury, 2012 Guidelines for Concussion/Mild Traumatic Brain Injury and Persistent Symptoms, 2013 SIGN 130: Brain Injury Rehabilitation in Adults, March 2013 These documents were used to design both an integrated care pathway (Appendix F, G) and gap analysis (Appendix H). The Ontario Neurotrauma Foundation is currently working on a clinical practice guideline for the rehabilitation of adults with moderate to severe TBI. It is anticipated that this new guideline may become available within the next year. At that time, it is expected that the new guidelines will be incorporated into the Waterloo Wellington pathway. Adult Acquired Brain Injury Rehabilitative Care Integrated Pathway The pathway has two components: a narrative document that describes the key elements of ABI rehabilitation from initial diagnosis through to community integration (Appendix F); and a graphic pathway (Appendix G) that displays a visual overview of both the providers of rehabilitative care within 20 Sue Middleton et al., What Is An Integrated Care Pathway, Effective Interventions Unit, Integrated Care Pathways Guide 1: Definitions and Concepts, Sue Middleton et al., What Is An Integrated Care Pathway, P a g e

20 Waterloo Wellington and the flow of patients through the system. Of particular note are the following features: Early diagnosis is a critical success factor for individuals with ABI because it enables timely access to rehabilitative care which promotes more successful community integration and long term living. No door is the wrong door. The pathway is intended to reinforce the importance of achieving a flexible system of care that allows access to individuals at any point along the pathway. Knowledgeable care providers are equipped to navigate patients to the right service to meet their needs. A Single Point of Access to the ABI system of care will triage patients through to the required care provider(s). ABI survivors who are flagged as having complex needs will be assigned to a Patient Navigator. The navigator is an expert ABI clinician who is intended to function as a resource for the ABI survivor, their family, and the health care team to accurately target the right service, at the right time with great efficiency and little duplication of effort with other care providers. Seamless transitions between care providers and coordinated care plans enable positive patient outcomes. Not all ABI survivors are expected to navigate their way through the ABI system of a care in a linear way, from acute care, to rehab and the community. The potential for multiple points of transition for a survivor across the system necessitates providers to build highly collaborative working relationships so that a plan of care transfers seamlessly between them. Providers within this ABI system of care are accountable and there is systematic collection of indicators that measure system performance and patient outcomes. Gap Analysis It was recognized by the ABI Steering Committee that system design and change would require significant engagement of all key stakeholders across the continuum of care. To this end, a consultation day was held on February 26, The purpose of this event was to bring frontline clinicians and leaders from across Waterloo Wellington (Appendix I) to complete the gap analysis tool and test a draft care pathway using case studies that were designed to reflect common patient profiles (Appendix J). The gap analysis includes each element of the narrative care pathway: 1. General principles 2. Early assessment, treatment, and care 20 P a g e

21 3. Behavioural rehabilitation 4. Cognitive rehabilitation 5. Communication rehabilitation 6. Rehabilitation of motor function and control 7. Sensory impairment 8. Optimizing performance in daily living 9. Assessment and management of complications 10. Coma, vegetative state, and minimal conscious state 11. Vocational rehabilitation 12. Leisure and recreation 13. Family and caregivers 14. Discharge planning 15. Community rehabilitation Attendees of the consultation day were organized into small working groups that included a cross section of perspectives from across the system (acute, rehab, community). Each recommended element of rehabilitative care was reviewed to determine whether it is implemented fully, not at all, or sometimes. The results were collated and are available for review in Appendix K. In summary, the majority of recommended practices are in place only sometimes (40/55 elements). Twelve elements are not in place at all. Of particular note is the lack of: specialized training; case management; protocols for the management of common problems; vocational rehabilitation services; and a comprehensive interdisciplinary model of care in community rehabilitation. The system appears to be responding well in terms of providing augmentative communication and the delivery of recommended practices for the rehabilitation of motor control. RECOMMENDATIONS Following the completion of the gap analysis and case studies, the working groups flagged their priorities (Appendix L) to be considered by the ABI Steering Committee as part of their work plan going forward. After thoughtful deliberation, the ABI Steering Committee has identified the following recommendations: 1. Design a Single Point of Access for ABI Service within Waterloo Wellington (FY 2015) As reflected in the care pathway, stakeholders and committee members alike have reinforced the need for a formalized single point of intake into the ABI system of care. There are countless stories of survivors, their caregivers, and health care providers struggling with knowing how to access ABI services. Building on the success of the centralized intake model that has been established for bedded levels of rehabilitation and complex continuing care, the committee recommends that organizations that are 21 P a g e

22 providing outpatient and community-based ABI services work together to design a similar model that includes consistent referral criteria for like services, a common referral tool, and a shared referral management process. As a result of this work, patients or caregivers will have confidence that their referral will be streamed through to the right service provider in an efficient manner, ensuring that survivors don`t fall through the cracks of the system. Timely access is critical to the outcome for ABI survivors. The evidence that supports early and intensive rehabilitation for moderate to severe acquired brain injury is compelling, including 23 : Early rehabilitation is associated with better outcomes, including shorter comas and lengths of stay, higher cognitive levels at discharge, and a greater likelihood of discharge home. Increasing rehabilitation intensity reduces length of stay. Patients with a long length of stay who receive high-intensity rehabilitation achieve a better outcome than those who receive low-intensity rehabilitation. 2. Design a Patient Navigation Role (FY 2016) ABI has the potential to cause significant physical and cognitive disability. There are further long term risks associated with social isolation, alcohol and substance misuse, mental illness, and maladaptive behaviour 24. Given the complexity of challenges facing some ABI survivors and the broad range of services and multiple points of transition between care providers, the committee recommends the design of a patient navigation role for those survivors with complex needs. Building on the success of similar roles in cancer care and stroke, this patient navigation role is intended to provide clinical ABI expertise to "a system of services and resources that are mobilized based on the immediacy and severity of patients needs...accurately targeting the right service, at the right time, for the right patient with great efficiency and little duplication of effort" 25. Working with survivors and care providers, the scope of this role would include 26 : Navigation: identifying and mitigating barriers with patients; explaining services and what to expect; inquiring about barriers or concerns; supporting and coaching. 23 Evidence-Based Review of Moderate to Severe Acquired Brain Injury, Charmaine Mahar & Kym Fraser, Barriers to Success Community Reintegration Following Acquired Brain Injury, International Journal of Disability Management, 6 (2012): ng_acquired_brain_injury_%28abi%29 25 Canadian Partnership Against Cancer, Navigation: A Guide to Implementing Best Practices in Person-Centred Care, September Victoria Parker et al., Patient Navigation: Development of a Protocol for Describing What Navigators Do, Health Services Research, 45,2(April 2010): P a g e

23 Facilitation: case finding; coordination of communication between care providers; integration of information into the plan of care; collaboration. Maintaining Systems: building networks and referral pathways; reviewing cases 3. Design a Quality Improvement Project to Smooth Patient Transitions between Hamilton Health Sciences ABI Program and WWLHIN Service Providers (FY 2015) There is a well-established flow of ABI patients between Hamilton Health Sciences and WWLHIN acute and rehab providers. Stakeholders have identified concern that these points of transition are not always managed as well as they could be. There have been instances where community providers report that they have been notified of a patient only after they have been discharged from a bedded level of service. There is also a perception amongst inpatient rehab providers that transfers from Hamilton s ABI Program are intended only for discharge planning that could have occurred in Hamilton. Leadership of the Hamilton Health Sciences ABI Program have generously committed to working with WWLHIN providers to design a quality improvement project to improve communication at these points of transition for patients. An example of one strategy may be the requirement that the appropriate WW contact is included in a pre-discharge case conference to facilitate the transfer of information between providers. The steering recommends that this improvement initiative be a priority for FY Design an Integrated Community-Based ABI Rehabilitation Team (FY 2016/17) Currently, a number of organizations are providing ambulatory or community-based rehabilitation. Grand River Hospital and St. Joseph s Health Centre offer outpatient rehabilitation. The Community Care Access Centre and Traverse Independence provide outreach or home-based rehabilitation. The nurse practitioner located at the Kitchener Downtown Community Health Centre provides outreach and specialized clinic assessments for ABI. The Steering Committee has agreed that there may be an opportunity to develop formal partnerships between these providers to ensure that this collection of resources is being optimized both in terms of clinical specialization and streamlining access to care. Essentially, the goal of a community-based rehabilitation team would be to build capacity for early access to rehab services and increased rehab intensity to support patient outcomes and patient flow from hospital, thereby reducing ALC days. 5. Engagement with Mental Health and Addictions Services (FY 2015) The prevalence of mental health and addictions issues within the ABI population is staggering. Research data includes: 58% of individuals admitted to a brain injury rehabilitation program following a traumatic brain injury had a prior history of alcohol abuse or dependence J. Bogner et al., The Role of Agitation in the Prediction of Outcomes Following Traumatic Brain Injury, American Journal of Physical Medicine and Rehabilitation, 80 (2001): P a g e

24 72% of individuals with both mental illness and substance abuse had a history of brain injury 28 the prevalence of depression and anxiety in individuals with ABI is between 40-45% 29 A related issue is that of homelessness. A recent study 30 of men in homeless shelters reported the following: 45% of homeless respondents reported a positive history of traumatic brain injury 87% reported a first injury before the onset of homelessness It is; perhaps, more evident than ever before how important that our system of ABI care promotes collaborative working relationships that are inclusive of the mental health and addictions sectors. The steering committee recommends that Traverse Independence, as the ABI Stream Lead organization provide representation at the Welcoming Initiative committee table. The Welcoming Initiative is led by the Waterloo Wellington Mental Health and Addictions Network. The initiative is intended to implement a strategy that recognizes that people with complex issues are an expectation and not an exception in all settings, and should receive services that are welcoming, recovery oriented and concurrent/complexity capable. There is also discussion about Traverse Independence having representation or a linkage with the Mental Health and Addictions Council of the WWLHIN to further support this collaborative working relationship. 6. Implementation of the Care Pathway (FY 2015 and Ongoing) During the stakeholder consultation day, there was much discussion about a need to foster improved specialization to care for adults living with ABI. It was subsequently suggested that one approach to achieving this outcome would be to designate beds for ABI similar to what has occurred for stroke survivors. Given the smaller volumes of bedded care ABI survivors used with Waterloo Wellington, it is felt that a focus on building capacity amongst providers across the system of care for ABI would better meet these specialized needs and thus should be the priority focus. As reflected by the gap analysis and feedback from stakeholders there is inconsistent practice of the evidence-based guidelines for ABI rehabilitation contained with the new pathway. The steering committee recommends a focus on 28 J. Corrigan and J. Deutschle. The Presence and Impact of Traumatic Brain Injury Among Clients in Treatment for Co-Occurring Mental Illness and Substance Abuse, Brain Injury, 22,3 (2008): M. Hsieh et al., A Cognitive Behaviour Therapy (CBT) Programme for Anxiety Following Moderate-Severe Traumatic Brain Injury (TBI): Two Case Studies. Brain Injury, 22. (2012): Jane Topolovec-Vranic et al., Traumatic Brain Injury Among Men in an Urban Homeless Shelter: Observational Study of the Rates and Mechanisms of Injury. Canadian Medical Association Journal Open, 2, 2 (2014): E69-E P a g e

25 implementation of the pathway that will include the identification of a clinical lead within each organization. Ongoing, every six months, the steering committee will identify key areas of focus based on the gap analysis. Working with the clinical leads, the steering committee will support consistent adoption of these clinical practices. 7. Build Capacity for ABI Specialized Rehabilitation Knowledge and Skills (FY 2015 and Ongoing) Both the gap analysis and stakeholder feedback have highlighted that there is a significant need to focus on continuous education and specialized training for care providers. The ABI Steering Committee has annual funding available to support this effort. The completion of the integrated care pathway will aide in the identification of future areas of focus for education and training (e.g. screening for ABI, behavioural management, vestibular retraining). An annual conference in addition to targeted training in clinical settings including job shadowing opportunities at the Hamilton Health Sciences ABI Program have been flagged as potential options for the committee to focus on annually. 8. Implement a Quarterly Dashboard (FY 2015 and Ongoing) The ongoing identification of needs and the management of system performance require the steering committee to adopt a dashboard that includes specific indicators that are aligned with the outcomes expected from the work plan. Building from the baseline data report that was completed for this project, the steering committee has begun to design a dashboard (Appendix M) based on available data that is intended to answer the following key questions as a starting point for future planning: How many adults are presenting to WW emergency departments with ABI? How many ABI admits to inpatient beds (acute, rehab, CCC)? Are acute ABI patients getting to the right post-acute destination at the right time? Are we using our rehab beds efficiently? Are the majority of patients getting home post discharge? Is the patient capacity of outpatient/community-based rehab programs meeting the demand? The steering committee recommends that focussed work continues to design a dashboard that will be regularly reviewed and updated. 9. Implement a Communication Strategy (FY 2015 and Ongoing) Recognizing the importance of communication with stakeholders within WW and beyond, the steering committee is committed to deliver a biannual newsletter that is intended to provide an update of progress with the work plan in addition to highlighting any new trends, research, or best practices. Similar newsletters were disseminated during this project (Appendix N). In addition, participation in a professional conference is a recommended goal for the steering committee. 25 P a g e

26 ABI STEERING COMMITTEE WORK PLAN OVERVIEW (Fiscal Year ) Based on these recommendations, the Steering Committee has drafted a work plan for the next fiscal year (Table 2). DELIVERABLE 1. A model for a Single Point of Access for ABI Services ACTIVITIES Identify potential partner organizations Establish a project team with approval from senior leadership in each organization Develop a comprehensive project charter Literature search for best practice models Design a draft model Secure feedback and a decision regarding implementation 2. Improve the transfer of care between Hamilton Health Sciences and WW ABI Service Providers Table 2: ABI Steering Committee Work Plan (Fiscal Year ) Identify potential partner organizations Establish a project team with approval from senior leadership in each organization Develop a quality improvement plan Apply Plan-Do-Study-Act Cycle 3. Implementation of the ABI care pathway Identify ABI clinical leads across organizations using the gap analysis results, identify practices to target for improvement using six month timelines, identify an improvement plan 6. Delivery of a one day ABI conference Identify membership for a work group identify education/skill priorities development a plan for a conference to be held within the fiscal year 7. A quarterly dashboard to monitor utilization of and access to the ABI system of care. Colloborate with LHIN Decision Support Team to identify the required indicators and a dashboard template Identify a data collection timeline to support quarterly reporting 9. A biannual newsletter Identify biannual updates to stakeholders on the progress of the Steering Committee workplan in addition to highlighting relevant new trends, research, or best practices 26 P a g e

27 CONCLUSION ABI has been referred to as a silent epidemic 31 and as such, it demands an innovative and collaborative response consistent with what has been demonstrated through this project. The ABI Steering Committee has succeeded in meeting their project deliverables including: an analysis of the utilization of hospital-based services; an ABI service inventory; an integrated rehabilitative care pathway; and a gap analysis that has informed recommendations and a work plan. This project has reinforced the need for Waterloo Wellington care providers to continue to work towards the design of a comprehensive system of ABI care that is easy to access and navigate wherever a survivor might be in the trajectory of their recovery. 31 Barbara O Connell, Community Rehabilitation for People with Acquired Brain Injury an Irish Model: Innovative Collaborative and Value for Money (October 2010). OConnell.pdf 27 P a g e

28 APPENDICES APPENDIX A Waterloo Wellington ABI Steering Committee STEERING COMMITTEE MEMBERSHIP Perspective Organization Role Name Stream Lead Traverse Independence Chief Executive Officer Toby Harris Acute/Rehab Hospital GRH Program Director, Stroke Jennifer Breaton Acute/Rehab Hospital CMH Manager, Rehab Amber Anderson-Lunn Tertiary Rehab Hospital HHSC Clinical Manager, ABI Program John Zsofcsin Community Rehab/Integration WWCCAC Manager, Client Services Maria Fage Director, Patient Services Dana Kahn Community Rehab/Integration Traverse Independence ABI Clinical Consultant Jean Taylor Community Rehab/Integration SJHC Director of Outreach Services Tiffany Smith Mental Health CMHA Manager, Specialized Geriatric Services Cathy Sturdy Smith Mental Health Homewood System Coordinator Gerard Reuss Primary Care Kitchener Downtown CHC Director of Client Services Stephen Gross Physician Lead (Ad Hoc) Grand River Hospital Physiatrist Doug Dittmer Consumer Traverse Independence Sahver Kuzucuoglu 28 P a g e

29 Mandate: APPENDIX B Waterloo Wellington Acquired Brain Injury (ABI) Steering Committee Terms of Reference The ABI Steering Committee is a strategic steering committee with the mandate to support and coordinate the integrated ABI System in the WWLHIN area. The Steering Committee will provide direction, support and advice to the Rehabilitative Care Council (RCC) in the pursuit of system change, accomplishment of the strategic goals and objectives of the Rehabilitative Care System. The ABI Steering Committee will: 1. Provide operational and clinical advice to the RCC to inform system planning decisions and quality improvement initiatives. 2. Develop and make recommendations to the RCC related to current and future planning for ABI services and integration opportunities. 3. Promote the coordination of WWLHIN ABI services and programs as a regional (WWLHIN) health system resource and identify quality improvement opportunities to be recommended to the RCC. 4. Identify best and leading practices, evidence based and system performance data and leverage this information to improve the ABI service delivery model, capacity and resources. 5. Develop clinical pathways for ABI services and oversee implementation of those pathways to/ support integrated and seamless transitions through rehab to community services. 6. Formalize linkages between the community and the hospital sectors to plan for streamlined ABI Services in Waterloo Wellington 7. Standardize patient outcomes and measures of system performance across the continuum of care for patients with ABI and develop a system that offers streamlined, equitable access to community services/programs Accountability: The ABI Steering Committee represents the interests of residents of Waterloo Wellington who have survived a brain injury. The Steering Committee is accountable to the Waterloo Wellington Rehabilitative Care Council and provides advice and recommendations to inform and support future planning and integration of the ABI service delivery system in the WWLHIN area congruent with the strategic goals and priorities of the WW Rehabilitative Care System. The role of the ABI Steering 29 P a g e

30 Committee is to support the coordination of regional resources and quality improvement initiatives with the ABI population. Frequency of Meetings: Two hour meetings will be held monthly with a minimum of 10 meetings per year. Teleconference will be provided to support meeting attendance. Attendance is required for at least 2/3 of the meetings to be maintained as an active member. Membership Chaired by the CEO of the Stream Lead Organization. Community Support Services that provide ABI specialized services (SJHCG and Traverse Independence) WW Community Care Access Centre (WWCCAC) Geriatric Services Acute Care Primary Care (FHTs, physicians) Mental Health (Homewood, CMHAWW) Addiction Services Regional ABI Centre (HHS) Inpatient rehab and outpatient rehab As needed additional representation can be sought from: Primary Care Physicians, Specialists, EMS, Toronto ABI network Responsibility of Members: Members are expected to identify an alternate who will attend meetings on their behalf in the event they are unable to attend. Decision Making Decision-making will be by member consensus. In the event that consensus cannot be reached a quorum (50% +1) must be present to move forward with a recommendation or decision. Conflict of Interest: The ABI Committee places fundamental value on maintaining a client centered perspective in its work, at all times striving to make decisions that benefit the system as a whole. It is understood, however, that 30 P a g e

31 as a representative of an agency, the chair(s) and all individual members, while striving to maintain a system perspective, will, at times, need to speak clearly from the perspective of his/her agency. The essence of articulating a conflict of interest is the clear and open expression of those tensions that exist between an agency s interests and those of the system as a whole. A conflict of interest exists, as assessed by a reasonably informed person, when an individual uses position, authority, or privileged information to: Obtain or permit an improper benefit, directly or indirectly or; Obtain or permit an improper benefit for a friend, relative, or associate A conflict of interest may occur and be declared, then, when a member s personal (agency) interests are incompatible or in conflict with his/her responsibility to make decisions in the best interests of the system. Meetings: For the first year the ABI Steering Committee will meet monthly with a minimum of ten meetings held annually in order to provide direction and coordination as required. Thereafter the Steering Committee will meet as required but no less than four times per year. Teleconference and OTN will be provided if requested to support meeting attendance. Minutes: Minutes shall be recorded for all meetings of the Steering Committee and circulated to the committee members. Terms of Reference: The ABI Steering Committee will review, adjust and approve the terms of reference annually to ensure that they remain relevant 31 P a g e

32 APPENDIX C Guiding Principles for Waterloo Wellington Region Acquired Brain Injury (ABI) Integrated System Planning Services developed for persons with ABI will be: 1. patient/client and family centred in order to ensure that services are provided in a way that respects client autonomy, dignity, values, and preferences; 2. responsive to the diverse and changing needs of ABI patients/clients and their families; 3. available across the continuum of care from initial onset to community reintegration including the need for episodic or intermittent service; 4. provided through comprehensive, coordinated, and flexible approaches that are responsive to local needs and build upon partnerships between providers of specialized ABI services and more generic service providers; 5. accessible to all residents of the Waterloo Wellington LHIN regardless of location and ability to pay; 6. respectful of the unique roles and responsibilities that local facilities and organizations fulfill within the communities they serve; 7. supported by sufficient numbers of appropriately trained professionals and related infrastructure to ensure effective, efficient service delivery; 8. inclusive of educational approaches and mentoring in order to strengthen the local delivery of services to persons with an ABI; 9. focused on rehabilitative care across the continuum of ABI services; 10. research and evidence-based; and 11. planned, implemented and evaluated with due regard to both the effectiveness of services and to their success in optimizing the use of available resources. (adapted from the Guiding Principles for ABI Service Planning in the Waterloo Region Wellington Dufferin District, Phase II ABI Reference Group, October 2003) January 20, P a g e

33 APPENDIX D Waterloo Wellington Health System Decision Support Centre Report Title Req ABI Indicator Report Report Date March 19, 2015 Background/Overview As part of the WWLHIN acquired brain injury (ABI) stream care pathway dashboard development, Karen Conway has requested three fiscal years of historical data for indicators that are being considered for the dashboard. The definition for acquired brain injury patients come from the Ontario ABI Dataset project which does not include stroke patients. However, subarachnoid haemorrhages was added to the ABI group as well, since these stroke patients are not included in the Stroke QBP definition. METHODS Data Source Discharge Abstract Database (DAD) National Ambulatory Care Reporting System (NACRS) National Rehabilitation Reporting System (NRS) Continuing Care Reporting System (CCRS) 33 P a g e Time Period FY 2011-FY 2013 Selection Criteria Methodology This report includes visits to Waterloo Wellington LHIN facilities (including emergency departments, inpatient acute beds, inpatient rehab beds and complex continuing care beds) for acquired brain injury (non-stroke) and subarachnoid haemorrhage patients 18 years of age or older with a valid health card number. Patients with emergency department visits or inpatient acute discharges are included if they have a most responsible diagnosis of ABI (as defined in the Ontario ABI dataset project - see appendix A) or subarachnoid haemorrhage. Inpatient rehabilitation patients are included if at least one of the following is true: 1. The patient has a most responsible diagnosis of ABI or subarachnoid haemorrhage. 2. The patient is included in the traumatic or non-traumatic brain injury rehabilitation group. 3. The patient had an acute inpatient record or emergency department visit as an ABI or subarachnoid haemorrhage patient in the 30 days previous to their rehab admission. Complex continuing care (CCC) patients were included if they had an acute inpatient record, emergency department visit, or a inpatient rehabilitation record as an ABI or subarachnoid haemorrhage patient in the 30 days previous to their CCC admission. Appendix C outlines the variables in each data set used to define patient discharge destinations. The number of equivalent beds used (Tables 5, 8, 13) is the total length of stay in days divided by the number of days in a year. The NRS does not record alternate level of care (ALC) length of stay for inpatient rehabilitation beds, thus the ALC length of stay reported in Table 8 is the difference between each patient's actual discharge date and their ready to be discharged date. Average FIM efficiency in Table 11 is calculated by dividing each rehab visit's overall FIM change from admission to discharge by the total length of stay. Then the average of each visit's FIM efficiency was taken to achieve a facility level average.

34 Key Findings In FY 2013 there were 487 acute inpatient admissions to Waterloo Wellington LHIN hospitals for ABI, 34% of which were at Grand River Hospital - Waterloo Site (Table 3). An increasing percent of ABI acute inpatients are discharged home with formal supports and a decreasing percent of ABI acute inpatients are discharged home without formal supports from FY (Table 4). From FY FY 2013 a growing percentage of ABI inpatient rehabilitation cases have been at Grand River Hospital - Freeport Site and Cambridge Memorial Hospital instead of St. Joseph's Health Centre - Guelph (Table 7). Cambridge Memorial Hospital has a higher percentage of total inpatient rehab days that are ALC than Grand River Hospital - Freeport Site or St. Joseph's Health Centre - Guelph (Table 8). The average FIM efficiency for rehab patients at Cambridge Memorial hospital is consistently higher than the other sites (Table 11). Admissions to complex continuing care (CCC) in WWLHIN hospitals decreased by a quarter from FY 2011 to FY 2013 (Table 12), and the average length of stay for CCC patients has been increasing from FY 2011 to FY Small Cell Counts The Waterloo Wellington Health System Decision Support Centre (WWHS DSC) has produced this report for the purpose of improving the quality of care in the provision of health services for patients and residents of Waterloo Wellington. The intended audience of this report is health service providers within the circle of care or to individuals within the Waterloo Wellington Local Health Integration Network (WWLHIN) who are using the information to improve the services provided within the region. The DSC assumes that individuals outside of the circle of care, receiving this report for the purpose of improving the provision of health services, will not use the information in this report in combination with other information for the purpose of identifying individuals. Furthermore, that their organizations have policies in place that prohibit individuals from using information in healthcare management reports such as this one to re-identify patients. Provided to Karen Conway, Acquired Brain Injury System Integration Analyst, Traverse Independence For further information, please contact: Michelle dejonge, ext. 302 Waterloo Wellington Health System Decision Support Centre 50 Sportsworld Crossing Rd. Suite 220 Kitchener, ON N2P 0A4 [email protected] The Waterloo Wellington Health System Decision Support Centre was established to provide information to the Waterloo Wellington health system to support effective decision-making across the continuum of care to generate better health and better care for the local residents, and better value for taxpayer dollars. The Centre provides analytic support to build and communicate effectively an understanding of the patient experience of local health care including service utilization, service integration, and program effectiveness across the continuum of care to contribute to better informed decisions related to health system integration and transformation. With a full picture of a patient's journey, quality of local services, and current performance against targets, the health system will be better able to create streamlined, more cost-effective programs/services, resulting in higher quality and improved patient experience across multiple providers. 34 P a g e

35 Waterloo Wellington Health System Decision Support Centre E m erg e nc y departm en t v is its for ac q uired brain injuries (non-s trok e ) and s ub arac hnoid haem orrhag es Time period: FY to FY Data source: National Ambulatory Care Reporting System (NACRS), Accessed through IntelliHealth Ontario Table 1: Number of WWLHIN hospital emergency department visits by CTAS level and fiscal year of registration Indicator 1: Total ED ABI visits FY 2011 FY 2012 FY 2013 CTAS Level # Visits % of Visits # Visits % of Visits # Visits % of Visits I 53 4% 61 4% 65 4% II % % % III % % % IV % % % V 8 1% 9 1% 4 0% Unknown 36 3% 18 1% 23 1% Grand Total 1, % 1, % 1, % Annual Growth % 20.8% Table 2: Number of WWLHIN hospital emergency department visits by discharge destination and fiscal year of registration Indicator 2: Discharge disposition of ED ABI visits FY 2011 FY 2012 FY 2013 Discharge Destination # Visits % of Visits # Visits % of Visits # Visits % of Visits Discharged home, no formal supports % % 1,084 66% Admitted to acute service, same hospital % % % Admitted to acute service, another hospital % 126 9% 115 7% Discharged with formal supports 17 1% 17 1% 26 2% Transferred to another non-acute care facility 10 1% 10 1% 11 1% Premature self-departure 4 0% 11 1% 8 0% Deceased 9 1% 9 1% 3 0% Unknown 2 0% 3 0% 1 0% Grand Total 1, % 1, % 1, % 35 P a g e

36 Waterloo Wellington Health System Decision Support Centre A c u te inpatient v olum es for ac q uired brain injuries (non-s trok e ) and s ub ara c hnoid haem orrha g es Time period: FY to FY Data source: Discharge Abstract Database (DAD), Accessed through IntelliHealth Ontario Table 3: Number of acute inpatient discharges by Waterloo Wellington LHIN hospital and fiscal year of discharge Indicator 3: Total # of inpatient ABI admissions to acute hospital FY 2011 FY 2012 FY 2013 Facility # Dschgs % of Dschgs # Dschgs % of Dschgs # Dschgs % of Dschgs (1905) CAMBRIDGE MEMORIAL HOSPITAL 72 19% % % (1921) ST MARY'S GENERAL HOSPITAL 45 12% 54 12% 66 14% (1936) GROVES MEMORIAL COMMUNITY HOSPITAL 17 5% 17 4% 23 5% (1946) GUELPH GENERAL HOSPITAL 89 24% 85 19% % (3734) GRAND RIVER HOSPITAL CORP-WATERLOO SITE % % % (4323) NORTH WELLINGTON HLTH CARE-MOUNT FOREST 4 1% 6 1% 8 2% (4326) NORTH WELLINGTON HLTH CARE-PALMERSTON 6 2% 6 1% 7 1% Grand Total % % % Annual Growth % 11.2% Table 4: Number of acute impatient discharges by discharge destination and fiscal year of discharge Indicator 4: Discharge disposition of acute hospitals ABI FY 2011 FY 2012 FY 2013 Discharge Destination # Dschgs % of Dschgs # Dschgs % of Dschgs # Dschgs % of Dschgs Discharged home, no formal supports % % % Discharged home with formal supports 63 17% 77 18% % Admitted to acute service, another hospital 56 15% 82 19% 92 19% Deceased 44 12% 54 12% 43 9% Transferred to inpatient rehabilitation 21 6% 26 6% 32 7% Transferred to complex continuing care 26 7% 19 4% 23 5% Transferred to long term care 12 3% 23 5% 16 3% Transferred to psychiatric facility 8 2% 13 3% 13 3% Transferred to other type of facility 3 1% 8 2% 17 3% Premature self-departure 5 1% 4 1% 4 1% Transferred to unknown 0% 1 0% 0% Grand Total % % % 36 P a g e

37 ABI PATHWAY PROJECT Final Report 12/05/15 Waterloo Wellington Health System Decision Support Centre Ac ute inpatien t volumes for a c quired brain injuries (non-s troke) and s ubarac hnoid haem orrhag es Time period: FY to FY Data source: Discharge Abstract Database (DAD), Accessed through IntelliHealth Ontario Table 5: Sum of total and alternate level of care length of stay (in days) by facility and fiscal year of discharge Indicator 8 & 11: Alternate level of care acute days, total acute days FY 2011 FY 2012 FY 2013 Facility ALC LOS Total LOS % ALC Equivalent Beds Used ALC LOS Total LOS % ALC Equivalent Beds Used ALC LOS Total LOS % ALC Equivalent Beds Used (1905) CAMBRIDGE MEMORIAL HOSPITAL % % % 1.94 (1921) ST MARY'S GENERAL HOSPITAL % % % 2.03 (1936) GROVES MEMORIAL COMMUNITY HOSPITAL % % % 0.46 (1946) GUELPH GENERAL HOSPITAL % % % 2.68 (3734) GRAND RIVER HOSPITAL CORP-WATERLOO SITE 313 1,269 25% ,610 33% ,151 18% 5.89 (4323) NORTH WELLINGTON HLTH CARE-MOUNT FOREST % % % 0.17 (4326) NORTH WELLINGTON HLTH CARE-PALMERSTON % % % 0.10 Grand Total 733 3,259 22% ,061 3,769 28% ,129 4,847 23% Table 6 : Average total acute length of stay (in days) by facility and fiscal year of discharge Indicator 14: Average length of stay acute Facility FY 2011 FY 2012 FY 2013 (1905) CAMBRIDGE MEMORIAL HOSPITAL (1921) ST MARY'S GENERAL HOSPITAL (1936) GROVES MEMORIAL COMMUNITY HOSPITAL (1946) GUELPH GENERAL HOSPITAL (3734) GRAND RIVER HOSPITAL CORP-WATERLOO SITE (4323) NORTH WELLINGTON HLTH CARE-MOUNT FOREST (4326) NORTH WELLINGTON HLTH CARE-PALMERSTON Grand Total P a g e

38 ABI PATHWAY PROJECT Final Report 12/05/15 Waterloo Wellington Health System Decision Support Centre R ehabilitation inp atient volum es for acquired brain injuries (no n-s troke) a nd s ubarachn oid ha em orrhag es Time period: FY to FY Data source: National Rehabilitation Reporting System (NRS), Accessed through IntelliHealth Ontario Table 7: Number of admissions to inpatient rehabilitation by Waterloo Wellington LHIN hospital and fiscal year of admission Indicator 5: Total # of admissions inpatient rehabilitation FY 2011 FY 2012 FY 2013 Hospital # Adms % of Adms # Adms % of Adms # Adms % of Adms (1912) GRAND RIVER HOSPITAL CORP-FREEPORT SITE 24 39% 31 42% 40 49% (3912) ST JOSEPH'S HEALTH CENTRE,GUELPH 27 44% 24 32% 20 25% (4720) CAMBRIDGE MEMORIAL HOSPITAL 11 18% 19 26% 21 26% Grand Total % % % Annual Growth % 9.5% 38 P a g e

39 ABI PATHWAY PROJECT Final Report 12/05/15 Waterloo Wellington Health System Decision Support Centre R ehabilitation inpatient v olumes for acquired brain injuries (non-s troke) and s ubarachnoid haemorrhag es Time period: FY to FY Data source: National Rehabilitation Reporting System (NRS), Accessed through IntelliHealth Ontario Table 8: Sum of total and alternate level of care length of stay (in days) and number of discharges by facility and fiscal year of discharge Indicators 9 & 12: Alternate level of care rehab days, total rehab days FY 2011 FY 2012 FY 2013 Facility ALC LOS Total LOS % ALC Equivalent Equivalent Equivalent Beds Used # Dschgs ALC LOS Total LOS % ALC Beds Used # Dschgs ALC LOS Total LOS % ALC Beds Used # Dschgs (1912) GRAND RIVER HOSPITAL CORP-FREEPORT SITE % % , % (3912) ST JOSEPH'S HEALTH CENTRE,GUELPH % % % (4720) CAMBRIDGE MEMORIAL HOSPITAL % % % Grand Total 60 1, % , % , % R ehabilitation inp atient v olum es for ac quire d brain injuries (no n-s trok e) a nd s ubarac hn oid ha em orrhag es Time period: FY to FY Data source: National Rehabilitation Reporting System (NRS), Accessed through IntelliHealth Ontario Table 9 : Average total rehab length of stay (in days) by facility and fiscal year of admission Indicator 15: Average length of stay rehab FY 2011 FY 2012 FY 2013 Average Average Average Facility LOS # Dschgs LOS # Dschgs LOS # Dschgs (1912) GRAND RIVER HOSPITAL CORP-FREEPORT SITE (3912) ST JOSEPH'S HEALTH CENTRE,GUELPH (4720) CAMBRIDGE MEMORIAL HOSPITAL Grand Total P a g e

40 ABI PATHWAY PROJECT Final Report 12/05/15 Waterloo Wellington Health System Decision Support Centre R ehabilitation inp atient v olum es for ac quire d brain injuries (no n-s trok e) a nd s ubarac hn oid ha em orrhag es Time period: FY to FY Data source: National Rehabilitation Reporting System (NRS), Accessed through IntelliHealth Ontario Table 10 : Average FIM score at admission by fiscal year of discharge As requested in followup Facility FY 2011 FY 2012 FY 2013 (1912) GRAND RIVER HOSPITAL CORP-FREEPORT SITE (3912) ST JOSEPH'S HEALTH CENTRE,GUELPH (4720) CAMBRIDGE MEMORIAL HISPITAL Grand Total Table 11 : Average FIM efficiency by WWLHIN hospital and fiscal year of discharge Indicator 17: FIM Efficiency Facility FY 2011 FY 2012 FY 2013 (1912) GRAND RIVER HOSPITAL CORP-FREEPORT SITE (3912) ST JOSEPH'S HEALTH CENTRE,GUELPH (4720) CAMBRIDGE MEMORIAL HISPITAL Grand Total P a g e

41 C omplex contin uing c are volumes for acq uired brain injuries (non-s troke) and s ub ara chnoid haemorrha g es Time period: FY to FY Data source: Continuing Care Reporting System (CCRS), Accessed through IntelliHealth Ontario Table 12: Number of admissions to complex continuing care by Waterloo Wellington LHIN hospital and fiscal year of admission Indicator 6: Total # of admissions complex continuing care FY 2011 FY 2012 FY 2013 Hospital # Adms % of Adms # Adms % of Adms # Adms % of Adms (1937) GROVES MEMORIAL COMMUNITY HOSPITAL 4 9% 0% 3 6% (1952) ST JOSEPH'S HEALTH CENTRE,GUELPH 10 23% 5 16% 8 17% (3735) GRAND RIVER HOSPITAL CORP-FREEPORT SITE 29 67% 27 84% 36 77% Grand Total % % % Annual Growth % 46.9% Table 13: Total length of stay and number of discharges for complex continuing care patients by Waterloo Wellington hospital and fiscal year of discharge Indicator 13: Total CCC Days Facility Total LOS FY 2011 FY 2012 FY 2013 # Dschgs Equivalent Beds Used Total LOS # Dschgs Equivalent Beds Used Total LOS # Dschgs Equivalent Beds Used (1937) GROVES MEMORIAL COMMUNITY HOSPITAL (1952) ST JOSEPH'S HEALTH CENTRE,GUELPH (3735) GRAND RIVER HOSPITAL CORP-FREEPORT SITE Grand Total Table 14: Average total length of stay for complex continuing care patients by Waterloo Wellington hospital and fiscal year of discharge Indicator 13: Average length of stay CCC Facility FY 2011 FY 2012 FY 2013 (1937) GROVES MEMORIAL COMMUNITY HOSPITAL (1952) ST JOSEPH'S HEALTH CENTRE,GUELPH (3735) GRAND RIVER HOSPITAL CORP-FREEPORT SITE Grand Total P a g e

42 R ehabilitation inp atient volum es for acquired brain injuries (no n-s troke) a nd s ubarachn oid ha em orrhag es Time period: FY to FY Data source: National Rehabilitation Reporting System (NRS), Accessed through IntelliHealth Ontario Continuing Care Reporting System (CCRS), Accessed through IntelliHealth Ontario Table 15: Discharge destination for inpatient rehabilitation by fiscal year of discharge FY 2011 FY 2012 FY 2013 Discharge Destination # Dschgs % of Dschgs # Dschgs % of Dschgs # Dschgs % of Dschgs Unknown 22 39% 22 31% 24 31% Discharged home with formal supports 16 29% 20 28% 27 35% Transferred to inpatient rehabilitation 5 9% 8 11% 11 14% Transferred to acute care 5 9% 7 10% 6 8% Transferred to other type of facility 2 4% 8 11% 3 4% Transferred to long term care 3 5% 3 4% 2 3% Transferred to inpatient complex continuing care 3 5% 2 3% 3 4% Premature departure 0% 1 1% 1 1% Deceased 0% 0% 1 1% Grand Total % % % Table 16: Discharge destination for complex continuing care by fiscal year of discharge FY 2011 FY 2012 FY 2013 Discharge Destination # Dschgs % of Dschgs # Dschgs % of Dschgs # Dschgs % of Dschgs Deceased 21 58% 18 56% 18 42% Discharged home with formal supports 7 18% 8 22% 12 36% Transferred to acute care 3 8% 5 12% 8 16% Transferred to inpatient rehabiliation 3 8% 1 2% 1 2% Discharged home, no formal supports 3 8% 0% 2 4% Transferred to other type of facility 0% 3 7% 0% Grand Total % % % Table 17: Discharge disposition for post-acute hospital care (complex continuing care and inpatient rehabilitation) by fiscal year of discharge Indicator 7: Discharge disposition of post-acute hospital ABI FY 2011 FY 2012 FY 2013 Discharge Destination # Dschgs % of Dschgs # Dschgs % of Dschgs # Dschgs % of Dschgs Transferred to other type of facility 2 2% 11 10% 3 3% Discharged home with formal supports 23 25% 28 26% 39 33% Discharge home, no formal supports 3 3% 0 0% 2 2% Transferred to inpatient rehabilitation 8 9% 9 8% 12 10% Transferred to acute care 8 9% 12 11% 14 12% Transferred to long term care 3 3% 3 3% 2 2% Transferred to inpatient complex continuing care 3 3% 2 2% 3 3% Premature departure 0 0% 1 1% 1 1% Deceased 21 23% 18 17% 19 16% Unknown 22 24% 22 21% 24 20% Grand Total % % % 42 P a g e

43 Waterloo Wellington Health System Decision Support Centre A ppe ndix A : IC D-10 c o des of ac quired brain injury (A B I) as de fined by the O ntario A B I D atas et P rojec t T he IC D -10 d efinition s of A B I are an exc erp t fro m pa ges of the W aterlo o W e llin gton A B I report d ated A ugus t 13, 201 2, ac ces sed at http :// search.utoronto.ca /lhin.html on March 17, P a g e

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45 Waterloo Wellington Health System Decision Support Centre A ppe ndix B : S elec tio n C riteria for inpa tient reha bilita tion adm is s ions due to ac quired brain injuries (n on-s trok e) or s uba rac hnoid Background: Inpatient rehabilitation patients are included if at least one of the following selection categories holds true: Category 1. The patient has a most responsible diagnosis of ABI or subarachnoid haemorrhage on their rehab admission record Category 2. The patient is included in the traumatic or non-traumatic brain injury rehabilitation group Category 3. The patient had an acute inpatient record as an ABI or subarachnoid haemorrhage patient in the 30 days previous to their rehab admission Category 4. The patient had an emergency department visit as an ABI or subarachnoid haemorrhage patient in the 30 days previous to their rehab admission Table B1 demonstrates the percent of ABI (non-stroke) or subarachnoid haemorrhage patients that would be selected if only one of the categories listed above was used as the selection criteria. Table B1: Number of inpatient rehabilitation admissions by inclusion type and fiscal year of admission Note: The % of cases column will not add up to 100% as each patient admitted to rehab could qualify for multiple selection categories. For example, if a patient has a most responsible diagnosis of ABI or subarachnoid haemorrhage on their rehab admission and is part of the Traumatic Brain Injury rehabilitation group they contribute to the % of cases in the first two rows of the table (Categories 1 & 2). Category Description FY 2011 FY 2012 FY 2013 Total % of Cases Rehab admission has a most responsible diagnosis of ABI or subarachnoid haemorrhage % Rehab admission has a rehabilitation group of Traumatic or non- Traumatic Brain Injury % Patient had an acute inpatient record of ABI in the 30 days previous to their rehab admission % Patient had an ABI emergency department visit in the 30 days previous to their rehab admission % 45 P a g e

46 Waterloo Wellington Health System Decision Support Centre A ppe ndix C : A s s ig n ed dis c harg e des tination for ea c h data s et - bas ed on the fields found with in the datas et Table C1: Assigned discharge destination for emergency department visits based on the Disposition Status data field Disposition Status CLIENT ADMITTED AS INPATIENT TO CRITICAL CARE UNIT/OPERATING ROOM IN REPORTING FACILITY DIRECT FROM AMB. CARE VISIT FUNCTIONAL CENTRE CLIENT ADMITTED AS INPATIENT TO OTHER UNITS IN REPORTING FACILITY DIRECT FROM AMB. CARE VISIT FUNCTIONAL CENTRE CLIENT TRIAGED BUT LEFT WITHOUT BEING SEEN (PATIENT REGISTERED) CLIENT TRIAGED, REGISTERED AND ASSESSED BUT LEFT WITHOUT TREATMENT CLIENT TRIAGED, REGISTERED, AND ASSESSED BUT LEFT BEFORE TREATMENT COMPLETED DEATH AFTER ARRIVAL (DAA)/DEATH IN EMERGENCY (DIE) DISCHARGED HOME (PRIVATE DWELLING ONLY,NO SUPPORT SERVICES) DISCHARGED TO PLACE OF RESIDENCE/INSTITUTION (I.E NURSING HOME; CHRONIC CARE, PRIVATE DWELLING WITH HOME CARE, VON, JAIL) TRANSFERRED TO ANOTHER ACUTE CARE FACILITY DIRECTLY FROM AN AMBULATORY CARE VISIT FUNCTIONAL CENTRE TRANSFERRED TO ANOTHER NON-ACUTE CARE FACILITY DIRECTLY FROM AN AMB. CARE VISIT FUNCTIONAL CENTRE Assigned Discharge Destination Admitted to Acute Service, Same Hospital Admitted to Acute Service, Same Hospital Premature Self-Departure Premature Self-Departure Premature Self-Departure Deceased Discharged home, no formal supports Discharged with Formal Supports Admitted to Acute Service, Another Hospital Transferred to another non-acute care facility Table C2: Assigned discharge destination for inpatient acute discharges based on the Discharge Status and Transfer To Type data fields Discharge Status Transfer To Type Assigned Discharge Destination DECEASED Deceased DISCHARGED TO HOME WITH NO SUPPORT SERVICES Discharged Home, no formal supports DISCHARGED TO HOME WITH SUPPORT SERVICES (HOME CARE, SUPPORTIVE HOUSING, RETIREMENT HOMES) Discharged Home with formal supports LEFT AGAINST MEDICAL ADVICE (WITH/WITHOUT SIGNOUT, AWOL) Premature Self-Departure TRANSFERRED TO AN ACUTE INPATIENT FACILITY (ACUTE CARE TREATMENT HOSPITAL ONLY) Admitted to Acute Service, Another Hospital TRANSFERRED TO CONTINUING CARE FACILITY (INCL. MENTAL HEALTH, REHAB, NURSING HOME, CHRONIC CARE, ETC) CHRONIC CARE FACILITY Transferred to complex continuing care TRANSFERRED TO CONTINUING CARE FACILITY (INCL. MENTAL HEALTH, REHAB, NURSING HOME, CHRONIC CARE, ETC) GENERAL REHAB. FACILITY Transferred to inpatient rehabilitation TRANSFERRED TO CONTINUING CARE FACILITY (INCL. MENTAL HEALTH, REHAB, NURSING HOME, CHRONIC CARE, ETC) SPECIAL REHAB. FACILITY Transferred to inpatient rehabilitation TRANSFERRED TO CONTINUING CARE FACILITY (INCL. MENTAL HEALTH, REHAB, NURSING HOME, CHRONIC CARE, ETC) HOME FOR THE AGED Transferred to long term care TRANSFERRED TO CONTINUING CARE FACILITY (INCL. MENTAL HEALTH, REHAB, NURSING HOME, CHRONIC CARE, ETC) NURSING HOME Transferred to long term care TRANSFERRED TO CONTINUING CARE FACILITY (INCL. MENTAL HEALTH, REHAB, NURSING HOME, CHRONIC CARE, ETC) PSYCHIATRIC FACILITY Transferred to psychiatric facility TRANSFERRED TO OTHER TYPE OF FACILITY (INCL. AMBULATORY CARE, CORRECTIONAL CENTRE, CHILDREN'S AID SOC., ETC) Transferred to other type of facility 46 P a g e

47 Table C3: Assigned discharge destination for inpatient rehabilitation discharges based on the Discharge Reason and Transfer To Type fields Discharge Reason Transfer To Type Assigned Discharge Destination PERSON DECEASED Deceased FACILITY/AGENCY WITHDREW SERVICES Premature departure PERSON NO LONGER ELIGIBLE (FUNDING) Premature departure PERSON WITHDREW (AGAINST PROFESSIONAL ADVICE) Premature departure NOT AVAILABLE/UNKNOWN Unknown ACUTE CARE TREATMENT HOSP W/O PSYCH UNIT Transferred to acute care CHILDRENS MENTAL HEALTH CENTRE Transferred to mental health MENTAL HEALTH Transferred to mental health HOME FOR THE AGED Transferred to long term care SERVICE GOALS MET AND DISCHARGED TO COMMUNITY (PERMANENT NURSING HOME Transferred to long term care LIVING SETTING) CHRONIC CARE TREATMENT HOSP AND UNITS OF HOSP Transferred to inpatient complex continuing care OR GEN REHAB HOSP AND UNITS OF HOSP Transferred to inpatient rehabilitation SERVICE GOALS MET AND REFERRAL/TRANSFER TO OTHER REHAB TREATMENT CENTRE Transferred to inpatient rehabilitation UNIT/FACILITY SPECIAL REHAB HOSP & UNITS OF HOSPITALS Transferred to inpatient rehabilitation OR HOME CARE PROGRAM Discharged home with formal supports SERVICE GOALS NOT MET AND REFERRAL/TRANSFER TO OTHER AMBULANCE SERVICES Transferred to other type of facility UNIT/FACILITY OR DISCHARGED AMBULATORY CARE Transferred to other type of facility MIN OF HEALTH INTERNALLY USED CLASSIFICATION Transferred to other type of facility DAY PROCEDURES/SURGERY Transferred to other type of facility UNKNOWN Unknown Table C4: Assigned discharge destination for complex continuing care discharges based on the Disposition Status and Transfer To Type data fields Disposition Status Transfer To Type Assigned Discharge Destination DECEASED Deceased DISCHARGED HOME Discharged home, no formal supports TRANSFERRED TO ANOTHER INSTITUTION HOME CARE SERVICE Discharged home with formal supports TRANSFERRED TO ANOTHER INSTITUTION RESIDENTIAL CARE SERVICE (24-HOUR NURSING CARE) Discharged home with formal supports TRANSFERRED TO ANOTHER INSTITUTION RESIDENTIAL CARE SERVICE (BOARD AND CARE) Discharged home with formal supports TRANSFERRED TO ANOTHER INSTITUTION INPATIENT ACUTE CARE SERVICE Transferred to acute care TRANSFERRED TO ANOTHER INSTITUTION INPATIENT REHABILITATION SERVICE (GENERAL) Transferred to inpatient rehabilitation TRANSFERRED TO ANOTHER INSTITUTION INPATIENT REHABILITATION SERVICE (SPECIALIZED) Transferred to inpatient rehabilitation TRANSFERRED TO ANOTHER INSTITUTION OTHER/UNCLASSIFIED SERVICE Transferred to other type of facility UNKNOWN/NOT STATED Unknown 47 P a g e

48 APPENDIX E Inventory of Waterloo Wellington Publicly Funded ABI Services Organization/Agency Cambridge Memorial Hospital Program or Service Inpatient Rehabilitation Contact Waterloo Wellington Community Care Access Centre Intake (519) Program Description The General & Stroke In-Patient Rehab program provides intensive, goal-oriented rehabilitation for medically stable patients who require nursing or medical care that cannot be provided at home or in the community. The length of stay is goal-dependent and is targeted to range between 7 40 days as required to improve strength, endurance, or functioning to support the transition to the community. Occupational therapy and physiotherapy is based on a model of 60 minutes of total therapy daily, 5 7 times per week with a therapist or therapy assistant. Care plans are individualized and will be adjusted according to the individual s tolerance level and goals. Admission Criteria Minimum age of 18 years Patient is medically stable as per above criteria; all acute medical issues have been resolved or reached a plateau. The individual s needs are unable to be met with community resources (community services, outpatient therapy, CCAC services, and private pay services). There is clinical or research evidence that the individual is likely to benefit from the program. Treatment of other co-morbid illnesses/conditions do not interfere with patient s ability to participate in therapy activities (e.g., active treatment that results in frequent absences from the unit during rehab treatment sessions) There are no acute psychiatric issues limiting the patient s ability to participate in the program The patient or substitute decision maker has consented to treatment in the program and demonstrates capability, willingness, and motivation to participate in the rehab program. The patient has demonstrated the potential to tolerate being up and out of bed for at least 2 3 hours per day. Patient has demonstrated the potential to tolerate greater than 1 hour of therapy per day for up to 7 days per week. Rehab goals have been established and are specific, measurable, achievable, realistic and timely (SMART) to support effective discharge planning and guide transitions to the Rehab program. 48 P a g e

49 Organization/Agency Cambridge Memorial Hospital Program or Service Inpatient Rehabilitation Patient has demonstrated the potential to attain functional goals and readily integrate new learning into daily life, based on clinical expertise and/or evidence in the literature. Patient has sufficient cognitive skills to participate in goal setting and the ability to demonstrate regular progress (include MOCA score with referral when available). Patient is committed to returning to the community, utilizing family and community support services as required A discharge destination has been initiated in consultation with the patient. A medical follow-up plan is in place at the time of the referral and follow-up appointments have been made at the time of discharge from the acute site The patient s equipment needs have been determined and communicated to the Rehab site Exclusion Criteria Those exhibiting violent behaviors with tendencies to harm self, others or property Unresolved delirium Acute psychiatric issues limiting the patient s ability to participate in the program Individuals who have been assessed as palliative with a prognosis of less than three months Exit-seeking behaviour Patients with complex medical needs, such as peritoneal dialysis. Admission Process When the patient is determined appropriate for Rehab, the sending facility/care team fills in Complex Continuing Care & Rehabilitation Inpatient Admission Referral form and faxes it to CCAC ( ). Through centralized intake, the referral will be matched to the first available bed and the provided to the Rehab facility. The Rehab care team reviews the referral form and consults with the Rehab MRP. Once the Rehab MRP has accepted to the patient for admission, the sending facility/care team will be contacted for additional information, such as therapy notes, MARs, BPMH, and TOA. Equipment needs are clarified as well to ensure the Rehab site can provide appropriate equipment for the patient s participation in therapy. Sites arrange Physician-to-Physician handoff in collaboration with each other. The sending facility arranges for transfer of the patient to the Rehab unit. 49 P a g e

50 Organization/Agency Cambridge Memorial Hospital Program or Service Inpatient Rehabilitation The patient arrives at the Rehab unit and is admitted to the unit by nursing staff. Each admission is automatically referred to SW, OT, and PT, which will assess the patient with hours of admission. Other disciplines will be consulted and referred Rehabilitation Admission processes include history, assessments, risk screening, ARO screening, medication reconciliation, and goal setting Discharge Criteria Patients are discharged from rehab in accordance with their established goals and in conjunction with client, family, and care team input. NRS dates are utilized as target EDDs, with fluctuation based on client and family need. When the patient is able to be managed at home or in the community, the team will facilitate the transition with various community care providers. Family meetings are utilized frequently in this process, including teleconferences as needed. o The patient may discharged when the individual s needs are able to be met with community resources (community services, outpatient therapy, CCAC services, and private pay services). If the patient is no longer able to participate in therapy, the patient may be put on a service interruption in the short-term until such a time that they can again participate in Rehab. In these cases, the patient remains on the Rehab unit. However, if the acuity of the patient goes beyond what the Rehab unit is able to manage, the patient is repatriated or transferred to acute medical care as needed. These transfers include discharging the patient from Rehab and admitting the patient again to the receiving area. Once the patient has been transferred out, the bed is opened to the centralized intake waitlist, and the Rehab application process must be started again if the patient is to return to a Rehabilitation unit. o The patient may be discharged to acute or critical care when the acute patient needs go beyond what Rehab can effectively manage. This may include but is not limited to cardiac events, respiratory distress, chest drainage, or sepsis. Referral Sources 50 P a g e Family Physician NP Clinic Kitchener Downtown CHC Emergency Room Acute Tertiary Hospital Post-Acute Hospital (Rehab/CCC) Long Term Care Community Agency Self-referral/family

51 Organization/Agency Cambridge Memorial Hospital Program or Service Inpatient Rehabilitation Acute Hospital Inpatient Other (please specify) Capacity 14 Bed unit, including up to 6 designated stroke beds. Wait List Yes No If yes, what is the average wait time and how many people are currently on your list? How is your wait list prioritized (what criteria do you use)? Managed through Centralized Intake by CCAC. Patients are matched to the first available Geographical Catchment Area (What is the municipality of residence of the clients who you serve?) Kitchener Waterloo Cambridge Guelph Other (specify) All of these are our catchment area Organization/Agency Grand River Hospital Program or Service Inpatient Rehabilitation Contact Waterloo Wellington Community Care Access Centre Intake (519) Program Description The General In-patient Rehab program provides intensive, goaloriented rehabilitation for medically stable patients who require nursing or medical care that cannot be provided at home or in the community. The length of stay is goal dependent and is targeted to range between 7-40 days as required to improve strength, endurance, or functioning to support transition to the community. Individualized Care plans are developed by the multidisciplinary teams and will be adjusted according to the individual s tolerance level. Admission Criteria Minimum age of 16 years. Patient is medically stable as per above criteria; all acute medical issues have been resolved or reached a plateau. The individual s needs are unable to be met with community resources (community services, outpatient therapy, CCAC services, and private pay services). There is a reason to believe that based on clinical experience and evidence in the literature, the 51 P a g e

52 Organization/Agency Grand River Hospital Program or Service Inpatient Rehabilitation individual is likely to benefit from the program. Treatment of other co-morbid illnesses/conditions does not interfere with patient s ability to participate in rehab (ex. Active treatment that results in frequent absences from the unit during rehab treatment sessions) There are no acute psychiatric issues limiting the patient s ability to participate in the program The patient or substitute decision maker has consented to treatment in the program and demonstrates capability, willingness and motivation to participate in the rehab program. Patient has demonstrated the potential to tolerate being up and out of bed for at least 2-3 hours per day. Patient has demonstrated the potential to tolerate greater than 1 hour of therapy per day for up to 7 days per week. Rehab goals have been established and are specific, measurable; achievable realistic and timely to effective discharge planning. Patient has demonstrated the potential to attain functional goals, the ability to participate, and readily integrate new learning into daily life, based on clinical expertise and/or evidence in the literature. Patient has sufficient cognitive skills to participate in goal setting and the ability to demonstrate regular progress (include MOCA score with referral when available). Patient is committed to returning to the community, utilizing family and community support services as required A discharge destination has been initiated in consultation with the patient. A medical follow-up plan is in place at the time of the referral and follow-up appointments have been made at the time of discharge from the acute site The patient s special equipment needs have been determined Exclusion Criteria Those exhibiting violent behaviors with tendencies to harm self, others or property Unresolved delirium Acute psychiatric issues limiting the patient s ability to participate in the program Individuals who have been assessed as palliative with a prognosis of less than three months Exit-seeking behaviour Admission Process A referral form is available on the GRH website Once completed, it must be faxed to the Intake office at CCAC. Discharge Criteria Referral Sources 52 P a g e Family Physician NP Clinic Kitchener Downtown CHC Emergency Room Acute Tertiary Hospital Acute Hospital Inpatient Post-Acute Hospital (Rehab/CCC) Long Term Care Community Agency Other (please specify)

53 Organization/Agency Grand River Hospital Program or Service Inpatient Rehabilitation Capacity Wait List 33 Beds (18 stroke rehab and 15 general rehab) Yes No If yes, what is the average wait time and how many X YES people are currently on your list? Regional wait list is managed through CCAC. Wait times may vary dependent on need. How is your wait list prioritized (what criteria do you use)? n/a Geographical Catchment Area (What is the municipality of residence of the clients who you serve?) Kitchener Waterloo Cambridge Guelph Other THERE IS NO RESTRICTION BASED ON GEOGRAPHY Organization/Agency St. Joseph s Health Centre, Guelph Program or Service Inpatient Rehabilitation Contact Waterloo Wellington Community Care Access Centre Intake (519) Program Description The General In-patient Rehab program provides intensive, goaloriented rehabilitation for medically stable patients who require nursing or medical care that cannot be provided at home or in the community. The length of stay is goal dependent and is targeted to range between 7-40 days as required to improve strength, endurance, or functioning to support transition to the community. Occupational therapy and physiotherapy is based on a model of 60 minutes of total therapy daily, 5-7 times per week with a therapist or therapy assistant. Care plans are individualized and will be adjusted according to the individual s tolerance level. Admission Criteria Minimum age of 16 years. Patient is medically stable as per above criteria; all acute medical issues have been resolved or reached a plateau. The individual s needs are unable to be met with community resources (community services, outpatient therapy, 53 P a g e

54 Organization/Agency St. Joseph s Health Centre, Guelph Program or Service Inpatient Rehabilitation CCAC services, and private pay services). There is a reason to believe that based on clinical experience and evidence in the literature, the individual is likely to benefit from the program. Treatment of other co-morbid illnesses/conditions does not interfere with patient s ability to participate in rehab (ex. Active treatment that results in frequent absences from the unit during rehab treatment sessions) There are no acute psychiatric issues limiting the patient s ability to participate in the program The patient or substitute decision maker has consented to treatment in the program and demonstrates capability, willingness and motivation to participate in the rehab program. Patient has demonstrated the potential to tolerate being up and out of bed for at least 2-3 hours per day. Patient has demonstrated the potential to tolerate greater than 1 hour of therapy per day for up to 7 days per week. Rehab goals have been established and are specific, measurable; achievable realistic and timely to effective discharge planning. Patient has demonstrated the potential to attain functional goals, the ability to participate, and readily integrate new learning into daily life, based on clinical expertise and/or evidence in the literature. Patient has sufficient cognitive skills to participate in goal setting and the ability to demonstrate regular progress (include MOCA score with referral when available). Patient is committed to returning to the community, utilizing family and community support services as required A discharge destination has been initiated in consultation with the patient. A medical follow-up plan is in place at the time of the referral and follow-up appointments have been made at the time of discharge from the acute site The patient s special equipment needs have been determined Exclusion Criteria Those exhibiting violent behaviors with tendencies to harm self, others or property Unresolved delirium Acute psychiatric issues limiting the patient s ability to participate in the program Individuals who have been assessed as palliative with a prognosis of less than three months Exit-seeking behaviour Admission Process CCAC expanded role admission process regional bed matching Discharge Criteria Specific criteria not established Referral Sources 54 P a g e Family Physician NP Clinic Kitchener Downtown CHC Emergency Room Post-Acute Hospital (Rehab/CCC) Long Term Care Community Agency

55 Organization/Agency St. Joseph s Health Centre, Guelph Program or Service Inpatient Rehabilitation Acute Tertiary Hospital Acute Hospital Inpatient Self-referral/family Other (please specify) These are the current referral sources we see, although are open to others as patient need may require Capacity/Spaces 27 beds total, no dedicated space or bed allocation for ABI, staff ability to manage complex ABI patients would need to be determined if multiple simultaneous admissions were needed Wait List Yes No If yes, what is the average wait time and how many people are currently on your list? Wait list typically 0-5 days How is your wait list prioritized (what criteria do you use)? Wait list is chronological, and managed by CCAC Geographical Catchment Area (What is the municipality of residence of the clients who you serve?) Kitchener Waterloo Cambridge Guelph Other (specify) Provincial catchment (will take patients from anywhere in Ontario if they meet the admission criteria). Organization/Agency Grand River Hospital Program or Service Neurorehabilitation Clinic Contact Phone: Fax: Program Description The Neurorehabilitation Clinic provides short-term intensive outpatient rehabilitation for clients with neurological impairment. The service is offered at Grand River Hospital s Freeport Site. Admission Criteria The individual has an acute neurological (CNS) diagnosis, acute change in status of their neurological diagnosis, or a previous neurological diagnosis impacting the recovery from an acute medical 55 P a g e

56 Organization/Agency Grand River Hospital Program or Service Neurorehabilitation Clinic change, and requires individual/intensive therapy to attain functional goals. Additionally the client must meet the following general criteria: Requires selective occupational therapy, physiotherapy, recreation therapy, registered dietitian, social work, and/or speech/language therapy to attain functional goals. Medically stable. Able to tolerate travel to and from the clinic in addition to therapy. Rehabilitation needs can be met within the clinic. Demonstrates sufficient cognitive skills to participate in goal setting and to be able to integrate new learning into daily life. Minimum of 16 years of age. Physician referral required for treatment Exclusion Criteria A chronic neurological diagnosis, with no new neurological or medical change. A history of non-compliance in previous admissions to NRC. Referrals from Long Term Care unless there clearly defined and reasonable goals that cannot be met with the services available in the community or in the Long Term Care Facility. The referral is solely for return to driving, return to work, or splinting. Those exhibiting behaviors that cannot be managed within the outpatient setting. Admission Process Although prospective clients, family members and health care workers may recommend the clinic, a family physician or specialist must sign all referrals. Discharge Criteria Length of stay is based on best practice evidence and patient outcomes. Transition plans to the community are developed in partnership with patients and community agencies. Referral Sources Family Physician NP Clinic Kitchener Downtown CHC Emergency Room Acute Tertiary Hospital Acute Hospital Inpatient Post-Acute Hospital (Rehab/CCC) Long Term Care Community Agency Self-referral/family Other (please specify) Capacity/Spaces 56 P a g e

57 Organization/Agency Grand River Hospital Program or Service Neurorehabilitation Clinic Wait List YES Yes No If yes, what is the average wait time and how many people are currently on your list? Wait list is managed and prioritized by patient need How is your wait list prioritized (what criteria do you use)? Geographical Catchment Area (What is the municipality of residence of the clients who you serve?) Kitchener Waterloo Cambridge Guelph Other No restrictions Organization/Agency St. Joseph s Health Centre, Guelph Program or Service Contact Program Description Admission Criteria Outpatient (PT/OT) Rehabilitation Wayne Lew Manager of Outpatient Rehab Services Adult clients with functional impairments resulting from strokes, spinal cord injury and degenerative neurological conditions and Musculoskeletal impairments (post op and fractures) are seen by our outpatient rehabilitation therapy practitioners. This outpatient program places an emphasis on developing an individual therapy plan of care for each client. Each person is assessed to determine his or her abilities, needs, strengths, and challenges as a step toward setting his or her treatment goals. Family members can assist in setting goals and work with the client to achieve them. Transition to community resources is also a key discharge element. Referral by Physician, Nurse Practitioner Medically stable Motivated to participate Demonstrate sufficient cognitive skills to participate in goal setting and able to integrate new learning into daily life No acute psychiatric issues limiting the patient s ability to safely participate in the program 57 P a g e

58 Organization/Agency St. Joseph s Health Centre, Guelph Program or Service Outpatient (PT/OT) Rehabilitation Additionally the client must meet one of the following categories: 65 years and older Youth (0-19 years of age) Patients requiring physiotherapy services for an acute condition post hospitalization within an Acute Care or Inpatient Rehab Hospital and referred by a staff physician upon a patient s discharge from the hospital Post-Surgery with reduced physical function and mobility Post Fractures / Dislocations High Falls Risks Physician or nurse practitioner referral for client in receipt of Ontario Disability Support Program (ODSP) or Ontario Works benefits Exclusion Criteria Acute psychiatric issues limiting the patient s ability to safely participate in the program Clients exhibiting violent behaviors with tendencies to harm self, others or property Admission Process Referrals sent directly to SJHCG Outpatient Program fax or mail Discharge Criteria Therapeutic objectives achieved No further gains are likely to be achieved from continuing therapy services Referral Sources Family Physician Post-Acute Hospital NP Clinic Kitchener Downtown CHC (Rehab/CCC) Long Term Care Emergency Room Community Agency Acute Tertiary Hospital Self-referral/family Acute Hospital Inpatient Other (please specify) Capacity/Spaces Additional education support needed for Service providers in the management of more complex behavioral and cognitive issues Wait List Yes No If yes, what is the average wait time and how many people are currently on your list? Average wait time 14 days How is your wait list prioritized (what criteria do you use)? 58 P a g e Strive to meet care path recommendations for discharge from hospital to first available outpatient appointment

59 Organization/Agency St. Joseph s Health Centre, Guelph Program or Service Outpatient (PT/OT) Rehabilitation Chronological order of referrals received Geographical Catchment Area (What is the municipality of residence of the clients who you serve?) Kitchener Waterloo Cambridge Guelph Other Cambridge Guelph Other (specify) Wellington County and clients that meet our admission criteria Organization/Agency Kitchener Downtown Community Health Centre Program or Service Nurse Practitioner Specialized ABI Service Program Description ABI specific assessment by NP- assistance with ABI dx if needed. Goals are set with the client, and referrals facilitated for OHIP services/advocacy for these if needed. Ct s holistic needs and health determinants are assessed and factored into plan. Effort is made to link with family/significant other/health care team/support workers to address ct goals/ plan of care, caregiver coping, and coordination of services and communication between ct/family/team. The NP facilitates ABI Specialized Consultation Clinics- which provide limited consultation with PT/OT/Speech-Language (specializes in cognitive communication)/certified Behaviour Therapist(to help address challenging behaviours ct may have that are identified by client, family or health care team)/functional Vision Optometrist. We also have a consulting psychiatrist and neuropsychiatrist (addition of neuropsychiatrist is new in past week, and this team of psych/neuropsych will be evolving as they consider how they can best help our clients) Through these clinics clients will receive assessment and recommendations for management of their ABI related health concerns, and the NP will follow up with clients/families re prioritizing and working on their goals. If clients referred to the ABI service do not have a primary care provider, the NP is able to assist in their primary health care management until they are able to get a regular primary care provider. 59 P a g e

60 Organization/Agency Kitchener Downtown Community Health Centre Program or Service Nurse Practitioner Specialized ABI Service Admission Criteria Living in WW region, over age of 16 yrs, has Health Card; confirmed or suspected ABI and experiencing significant health issues that are not addressed through existing services. Exclusion Criteria Unable to accept referrals for brain injury in first week of life/ct solely has chronic neurological illness (no suspected ABI). Admission Process Referral form completion, intake appt booked with ct/support person if applicable, intakes and visits offered at ct s home or at location mutually agreed upon. Discharge Criteria When goals met and/or client withdraws from service. Referral Sources xfamily Physician x NP Clinic Kitchener Downtown CHC xemergency Room xacute Tertiary Hospital xacute Hospital Inpatient xpost-acute Hospital (Rehab/CCC) xlong Term Care x Community Agency x Self-referral/family Other (please specify) Capacity/Spaces Open waiting list not capped. Wait List xyes No If yes, what is the average wait time and how many people are currently on your list? Wait list has been 4-5 months- changes to intake, in partnership with Traverse will decrease time to intake, and time to service. How is your wait list prioritized (what criteria do you use)? Risk factors re health risks or health determinants/supports or lack of supports present at time of referral/and consideration of length of time on wait list. Geographical Catchment Area (What is the municipality of residence of the clients who you serve?) xkitchener xwaterloo xcambridge xguelph xother (specify) Welllington county 60 P a g e

61 Organization/Agency Program or Service Contact Program Description Traverse Independence ABI Outreach ABI Intake Coordinator Tel ext After having sustained a brain injury, returning to a well known neighbourhood, close to family, social supports, work or school, may be your transitional living goal. To make that a reality, Traverse Independence offers outreach services: our staff travels to your home and offers you the supports you need to bridge to your new home. Within one or more 3-month treatment plans, the community facilitator assists you to establish the routines developed in the In house phase in your new place of residence. In some cases ongoing weekly support is needed on a long term basis. Where possible, the long term consistent support developed by a community facilitator can be sustained with an outreach attendant care worker as your life stabilizes in your home community. The community facilitator works with your community based rehab team to apply goals and strategies to daily living. You work with a rehabilitation services worker or community facilitator on a weekly or daily basis to plan for success in the following areas of independent living: Scheduling appointments and transportation Budgeting Money tracking Menu planning Grocery list planning Grocery shopping Medical appointments Implementing rehabilitation programming Cleaning Laundry Bus training Admission Criteria Be 16 years of age Have a valid Ontario Health Card Be medically stable at the time of application Have a brain injury diagnosed by a regulated health professional Demonstrate the desire/motivation and/or potential to maintain and/or improve independent living skills. Exclusion Criteria Be dangerous to themselves or others Have severe behavioural problems Have ongoing mental health and active addiction issues 61 P a g e

62 Organization/Agency Program or Service Admission Process Discharge Criteria Referral Sources 62 P a g e Traverse Independence ABI Outreach After the applicant s initial information request, Traverse contacts the person to find out more about their needs. If basic eligibility criteria are met, Traverse will set up a tour or information session at the applicant s home or at Traverse sites. A personal assessment will take place, intake documents and the physician s medical report must be completed. The applicant s file is presented to the Traverse management team and the level of priority determined. The applicant is then advised of the outcome. The decision to discharge a client from Traverse Independence services can only be made by the Management team. The following discharge criteria will be utilized in making this decision: Be dangerous to themselves or others Have severe behavioural problems Have ongoing mental health and active addiction issues that cannot be managed in the community. Family Physician Post-Acute Hospital NP Clinic Kitchener (Rehab/CCC) Downtown CHC Long Term Care Emergency Room Community Agency Acute Tertiary Hospital Self-referral/family Acute Hospital Inpatient Other (please specify) Mental Health and Addictions Services - Justice system Capacity/Spaces Approximately 60 clients per week Wait List Yes No If yes, what is the average wait time and how many people are currently on your list? Average wait time: 12 months People currently on wait list: 70 How is your wait list prioritized (what criteria do you use)? Applicants are waitlisted based on the date of the referral. The following priority criteria will move the applicant towards the top of the list: Risk of homelessness Risk to self Urgency to discharge from hospital to prevent ALC days Geographical Catchment Area (What is the municipality of Kitchener Waterloo Cambridge Guelph

63 Organization/Agency Program or Service residence of the clients who you serve?) Traverse Independence ABI Outreach Other Waterloo Region, Wellington County and Southern part of Grey County. Referrals from applicants outside of this catchment area can be considered as well. Organization/Agency Traverse Independence Program or Service ABI Transitional Living Contact ABI Intake Coordinator Tel ext Program Description ABI Transitional Living assists a client to transition to (supported) independence. Phase One: Independent Living Skills Assessment A significant injury challenges your ability to reclaim your independence. Whether you are coming from the hospital or from living with caregivers, the first step of transitioning to supported independence is a 12-week assessment in an apartment setting. Your fully furnished apartment includes heat and hydro, cable, local phone and internet. The apartment is equipped with basic kitchen wares and everything you need, except your clothes, toiletries and personal items. The program provides a weekly allowance for you to purchase your grocery items, cleaning supplies and other items. Public transportation passes are included if needed. Phase Two: Skill Development Once an independent living skills assessment has been done, you and your team will establish which skills you need in order to accomplish your personal goals. The plan is designed to take you to independence in the community with the appropriate support. Admission Criteria Be 16 years of age Have a valid Ontario Health Card Be medically stable at the time of application Have a brain injury diagnosed by a regulated health professional Exclusion Criteria Be dangerous to yourself or others Have severe behavioural problems Have ongoing mental health and active addiction issues 63 P a g e

64 Organization/Agency Traverse Independence Program or Service ABI Transitional Living Admission Process After the applicant s initial information request, Traverse contacts the person to find out more about their needs. If basic eligibility criteria are met, Traverse will set up a tour or information session at the applicant s home or at Traverse sites. A personal assessment will take place, intake documents and the physician s medical report must be completed. The applicant s file is presented to the Traverse management team and the level of priority determined. The applicant is then advised of the outcome. Discharge Criteria The decision to discharge a client from Traverse Independence services can only be made by the Management team. The following discharge criteria will be utilized in making this decision: Be dangerous to themselves or others Have severe behavioural problems that exceed the capacity of staff to manage Have ongoing mental health and active addiction issues that exceed the capacity of staff teams to manage in community. Referral Sources Family Physician NP Clinic Kitchener Downtown CHC Emergency Room Acute Tertiary Hospital Acute Hospital Inpatient Post-Acute Hospital (Rehab/CCC) Long Term Care Community Agency Self-referral/family Other (please specify) Mental Health and Addictions Services - Justice system Capacity/Spaces 16 (8 in Kitchener and 8 in Fergus) Wait List Yes No If yes, what is the average wait time and how many people are currently on your list? Wait time: 2 to 6 months People currently on wait list: 7 Geographical Catchment Area 64 P a g e How is your wait list prioritized (what criteria do you use)? Applicants are waitlisted based on the date of the referral. The following priority criteria will move the applicant towards the top of the list: Risk of homelessness Risk to self or others Urgency to discharge from hospital to prevent ALC days Kitchener Waterloo Cambridge

65 Organization/Agency Traverse Independence Program or Service ABI Transitional Living (What is the Guelph municipality of Other Waterloo Region, Wellington County and Southern part of residence of the Grey County. Referrals from applicants outside of this catchment clients who you area can be considered as well. serve?) Organization/Agency Program or Service Contact Program Description St. Joseph s Health Centre, Guelph Acquired Brain Injury Day Program x4417 (General Inquiries) The Acquired Brain Injury Program helps youths over the age of 15 and adults who have experienced a traumatic injury to their brain maintain an optimum level of physical, emotional and social functioning. Participants enjoy arts programming, woodworking, gardening, music therapy, cooking, and games activities. Staff also assist participants and their families to cope with the stress and challenges they encounter in their home, educational, recreational, and work lives as they adjust to their changed circumstances. Staff will assist with transportation coordination if required. A nominal daily fee is charged ($5.00). Statements are issued monthly. Fee includes a hot meal daily, two nutritious snacks and program supplies. Admission Criteria Exclusion Criteria Admission Process Discharge Criteria Referral Sources Eligible participants must have a primary diagnosis of an Acquired Brain Injury from a qualified physician or medical specialist and must be at least 15 years of age or older. All eligible participants must also be certified by a physician to be medically safe. Based on programs ability to manage needs, behavioural stability and safety to participate in a group setting Referral received via call/fax from client/family or health professional/community agency. Clinical Resource Worker to contact the referred individual or caregiver, inform of intake process and description of program. An interview date is mutually agreed upon and PIECES/RISK Assessment is completed. Agency has intake slots open on Cardove.com for community agencies (i.e. CCAC) to book directly into approximately 2/week. Medical instability, active abuse of alcohol and/or drugs, risk of harm to self or others, emotional, behavioural and/or physical care needs are beyond the resources the Day Program can provide. Family Physician NP Clinic Kitchener Downtown CHC Post-Acute Hospital (Rehab/CCC) Long Term Care 65 P a g e

66 Organization/Agency Program or Service St. Joseph s Health Centre, Guelph Acquired Brain Injury Day Program Emergency Room Acute Tertiary Hospital Acute Hospital Inpatient Community Agency Self-referral/family Other (please specify) Psychiatric Facilities Capacity/Spaces Program operates Monday, Wednesday, Thursday and Friday during the day (8-4pm) and Tuesday evenings (3-8pm); average participants per day Wait List Yes No If yes, what is the average wait time and how many people are currently on your list? 1-3 month waiting list 5-10 participants currently waiting for intake or to start program. How is your wait list prioritized (what criteria do you use)? Referrals are prioritized based on date of referral. Some considerations are made based on referrer consultation and identification of priority needs ie. Isolation, lack of support system Geographical Catchment Area (What is the municipality of residence of the clients who you serve?) Kitchener Waterloo Cambridge Guelph Other (specify) Milton, North Wellington Clients are residents of Wellington/Dufferin County Organization/Agency Traverse Independence Program or Service The Opportunity Centre and Beginnings ABI Day Programs Contact ABI Intake Coordinator Tel ext [email protected] Program Description The focus of the Opportunity Centre is on connecting and empowering adults with acquired brain injuries (ABI) in a supportive, social environment. Just as our centre s name implies, the Opportunity Centre is about creating opportunities for our ABI clients. Whether your needs include socializing and connecting with 66 P a g e

67 Organization/Agency Traverse Independence Program or Service The Opportunity Centre and Beginnings ABI Day Programs other adults or developing specific cognitive and physical skills enabling you to live more independently, the Opportunity Centre s programs will assist you on your journey of growth. The Opportunity Centre incorporates recreation and leisure activities into its programs. A warm lunch is offered daily, thanks to a membership with the Food Bank of Waterloo Region. Attendant services are available if you require additional assistance with personal care. Typically, clients in the Beginnings program have needs that prevent them from participating in Opportunity Centre programs. Beginnings offers more structure and quiet, and a smaller number of clients participate in its programs. Beginnings gives you an opportunity to socialize, build friendships, relearn skills and develop new ones. Beginnings has an accessible setting where attendant services, behavioural facilitators, and life skills staff are available on a higher staff ratio than at the Opportunity Centre programs. Admission Criteria Be 18 years of age Have a valid Ontario Health Card Be medically stable at the time of application Have a brain injury diagnosed by a regulated health professional Have a level of independence that ensures the client s safety should they choose to leave the Opportunity Centre at any time Exclusion Criteria Be dangerous to yourself or others Have severe behavioural problems Have ongoing mental health and active addiction issues Admission Process After the applicant s initial information request, Traverse contacts the person to find out more about their needs using a basic screening tool. If basic eligibility criteria are met, Traverse will set up a tour or information session at the day program. An assessment will be completed with a clinical intake done, the physician s medical report must be completed. The applicant s file is presented to the Traverse intake team where final intake is completed. The applicant is then advised of the outcome. Discharge Criteria The decision to discharge a client from Traverse Independence services can only be made by the Management team. The following discharge criteria will be utilized in making this decision: danger to self or others criminal behaviour. 67 P a g e

68 Organization/Agency Traverse Independence Program or Service The Opportunity Centre and Beginnings ABI Day Programs Referral Sources Family Physician NP Clinic Kitchener Downtown CHC Emergency Room Acute Tertiary Hospital Acute Hospital Inpatient Post-Acute Hospital (Rehab/CCC) Long Term Care Community Agency Self-referral/family Other (please specify) Mental Health and Addictions Services - Justice system Capacity/Spaces 114 Wait List Yes No If yes, what is the average wait time and how many people are currently on your list? Wait list: none for the Opportunity Centre Wait list: yes for Beginnings 2 people currently on the list How is your wait list prioritized (what criteria do you use)? Applicants are waitlisted based on the date of the referral. Geographical Catchment Area (What is the municipality of residence of the clients who you serve?) Kitchener Waterloo Cambridge Guelph Other Waterloo Region, Wellington County and Southern part of Grey County. Referrals from applicants outside of this catchment area can be considered as well. Organization/Agency Traverse Independence Program or Service Slow to Recover ABI Group Home Contact ABI Intake Coordinator Tel ext [email protected] Program Description Traverse Independence s Group Home for adults with acquired brain injuries (ABI) is a nonmedical, shared living facility for six clients. Employees assist clients with their personal care, health and personal wellbeing, offer cognitive and behavioural management, and provide social and emotional support. The Group Home fosters clients independence and encourages clients to integrate into the community. 68 P a g e

69 Organization/Agency Traverse Independence Program or Service Slow to Recover ABI Group Home Admission Criteria Be 16 years of age Have a valid Ontario Health Card Be medically stable Have a brain injury diagnosed by a regulated health professional. Demonstrate the desire to be involved in programs Require 24 hour supervision Exclusion Criteria Be dangerous to yourself or others Have severe behavioural problems Have ongoing mental health and active addiction issues Admission Process After the applicant s initial information request, Traverse contacts the person to find out more about their needs. If basic eligibility criteria are met, Traverse will set up a tour or information session at the applicant s home or at Traverse sites. A personal assessment will take place, including a clinical. The physician s medical report must be completed. The applicant s file is presented to the Traverse management team and the intake is completed. The applicant is then advised of the outcome. Discharge Criteria The decision to discharge a client from Traverse Independence services can only be made by the Management team. The following discharge criteria will be utilized in making this decision: Be dangerous to yourself or others Have severe behavioural problems Have ongoing mental health and active addiction issues that cannot be managed. Referral Sources Family Physician NP Clinic Kitchener Downtown CHC Emergency Room Acute Tertiary Hospital Acute Hospital Inpatient 69 P a g e Post-Acute Hospital (Rehab/CCC) Long Term Care Community Agency Self-referral/family Other (please specify) Mental Health and Addictions Services - Justice system Capacity/Spaces 6 Wait List Yes No If yes, what is the average wait time and how many people are currently on your list? Wait time: lengthy because the Group Home is a permanent home for the clients who reside there. Places rarely become available.

70 Organization/Agency Traverse Independence Program or Service Slow to Recover ABI Group Home People currently on wait list: 12 How is your wait list prioritized (what criteria do you use)? Applicants are waitlisted based on the date of the referral. The following priority criteria will move the applicant towards the top of the list: Risk of homelessness Risk to self Urgency to discharge from hospital to prevent ALC days Geographical Catchment Area (What is the municipality of residence of the clients who you serve?) Kitchener Waterloo Cambridge Guelph Other Waterloo Region, Wellington County and Southern part of Grey County. Referrals from applicants outside of this catchment area can be considered as well. Organization/Agency Contact Program Description Brain Injury Association Waterloo Wellington Patti Lehman The Brain Injury Association of Waterloo-Wellington (B.I.A.W.W.) is a registered not-for-profit charity that provides support, advocacy, and programs to survivors of acquired brain injury (A.B.I.) and educational programs to the children and youth in the community of Waterloo Region and Wellington County. We provide resources on how to access community resources such as legal, rehabilitation, health care, work re-entry, school re-entry and community services. We make available information on concussion and acquired brain injury to survivors and their caregivers. We offer a vocational program called "Brain Injury Association: At Work". This program will assist adults with acquired brain injuries who have a desire to return to paid employment. We will assess education and current job skills, set work goals, provide job training on site, as well as develop job search skills, prepare a 70 P a g e

71 Organization/Agency Contact Brain Injury Association Waterloo Wellington Patti Lehman resume and numerous other tasks associated with a return to work plan. We offer a community prevention program called "Lidz on Kidz" which allows us to visit area schools and minor sport leagues to promote wearing the gear and playing safe with the proper helmet. We provide a caregivers support group called "Care to Share" where caregivers can speak with their peers to gain support and develop friendships. Admission Process Referral Sources Capacity/Spaces Limited Wait List Yes N o The vocational services manager will complete the intake process with all interested applicants Community Agency Self-referral/family If yes, what is the average wait time and how many people are currently on your list? NA How is your wait list prioritized (what criteria do you use)? Our wait list is currently based on whether or not the client has third party funding as we only have so many spaces for clients on ODSP, CPP, or other funding sources. Geographical Catchment Area (What is the municipality of residence of the clients who you serve?) Kitchener Waterloo Cambridge Guelph Wellington County 71 P a g e

72 APPENDIX F Waterloo Wellington Rehabilitative Care System Integrated Care Pathway For: ADULT ACQUIRED BRAIN INJURY (ABI) Stream of Care Introduction REFERENCESWaterloo Wellington Rehabilitative Care System Integrated Care Pathway For: This integrated care pathway for adult acquired brain injury (ABI) is designed to provide evidence-based recommendations to healthcare professionals for the delivery of a ADULT ACQUIRED BRAIN INJURY (ABI) coordinated system of care for persons living with ABI. The scope of this pathway is limited to publicly funded services. Stream of Care Definition of Acquired Brain Injury (Toronto ABI Network, 2006): An acquired brain injury is damage to the brain which occurs after birth and is not related to a congenital disorder, developmental disability, or a process that progressively damages the brain. The damage may be a result of trauma, a medical problem or a disease process. As a result of an ABI, an individual may experience physical, cognitive, emotional and/or behavioural disabilities in varying degrees, depending on the location, nature, and severity of the brain injury. Individuals with moderate to severe brain injuries generally require more intensive supports whereas individuals with mild brain injury often make a good recovery, returning to most if not all pre-injury function. However, it is important to note that even with mild brain injury, some individuals continue to experience long-lasting and debilitating impairments as a consequence of their deficits not being recognized initially or not being attributed to the ABI. Initial Diagnosis The initial diagnosis of an acquired brain injury occurs when an individual presents to their primary care provider, an acute care community hospital, or a tertiary acute care hospital where they may be treated in a trauma or neurosurgical service prior to returning to their home community. 72 P a g e

73 Responsibility of Care Setting: health care providers who are responsible for the initial diagnosis of the brain injury are encouraged to refer the patient to the ABI System of Care single point of intake for any required ABI services. Outcome: early access to coordinated rehabilitative care, community reintegration, and long term living supports. (*NEW system element yet to be designed) Care Setting Service Primary Care Acute Community Hospital Tertiary Community Hospital 73 P a g e The management of ABI patients should be guided by clinical assessments and protocols based on the Glasgow Coma Scale score (ABIKUS, p.16). Patients with ABI should be assessed for functional deficits in activities of daily living and be assessed for specific impairments in (ABIKUS, p.17): o Bowel and bladder Control o Speech and swallowing o Motor control o Sensory function o Language production and comprehension o Cognition o Memory o Emotion o Potential medical and psychiatric comorbidities that have symptomatic overlap with ABI Patients presenting with non-specific symptoms following mild traumatic brain injury should be reassured that the symptoms are benign and likely to settle within three months (SIGN130, p.8).

74 Every patient with a moderate to severe ABI should have access to early specialized interdisciplinary rehabilitation services (ABIKUS, p.16; SIGN130, p.8). Transition Point: Patients diagnosed with ABI are to be referred to Intake* within 24 hours to be registered in the WW ABI database* and assigned to an ABI Patient Navigator*. (* NEW system elements yet to be designed) Single Point of Intake for ABI System of Care* This single or central point of intake for persons with ABI is accessible at any a point following the initial diagnosis. This enables persons with ABI to access or re-access the system of ABI care irrespective of the amount of time that has transpired since their original injury. No door is the wrong door...knowledgeable providers across the system of ABI care are equipped to redirect persons with ABI to intake as needed. Responsibility of Intake: receipt of referral, data entry into the WW ABI Registry*, collation of relevant history, and assignment to an ABI Patient Navigator* Outcome: easy and coordinated access to rehabilitative care, community reintegration, and long term living supports (*NEW system element yet to be designed) 74 P a g e

75 ABI Patient Navigator* The ABI patient navigator fulfills a role that ensures seamless coordination of care as persons with complex needs following ABI transition through acute care to rehabilitation and reintegrate into the community. This role is also accessible to persons with ABI at times when they need to re-access the system or in situations where they may have never been linked to the ABI System of Care following their initial injury. Responsibility: clinical review of an individual s history; education for persons with ABI and their family/caregiver(s); collaborative care management that leads to linkages to the required service providers. Outcome: timely education and assessment that results in coordinated transition of the person with and ABI to the required service provider(s) (*NEW system element yet to be designed) Rehabilitative Care Access to early and intensive rehabilitation is critical. Rehabilitative care occurs across the system of ABI care and may include admission to an inpatient bed in a community or tertiary hospital or in outpatient and community settings. Rehabilitative care services are designed to be goal-specific and time-limited, however, it is possible to re-access service as new goals are identified. Rehabilitative care is delivered by interprofessional teams and is inclusive of physical rehab, activities of daily living, psychosocial rehab, communication therapy, cognitivebehavioural therapy, and discharge planning. Responsibility of care setting: accessible, specialized interdisciplinary rehabilitation that involves patients and their family/caregiver(s) in the design of a written plan of care; coordinated transfer of care to community reintegration and long term living support providers; post discharge follow up. 75 P a g e

76 Outcome: Patient and family/caregiver(s) directed rehabilitative care that facilitates achievement of the identified goals; timely and seamless transition to the designated discharge destination and/or community reintegration and long term living support provider(s). Care Setting Service Inpatient Rehabilitation Outpatient Rehabilitation Tertiary Specialized ABI Rehabilitation Transition Point: Confirm whether an ABI Patient Navigator* has been assigned to the patient. If not and required, refer the patient to Intake*. ( * NEW system elements yet to be designed) Cognitive Rehabilitation All patients after moderate to severe ABI should be assessed by neuropsychology, occupational therapy, and speech language pathology to evaluate cognitive functioning (ABIKUS, p.21). The multidisciplinary treatment team is based on the individual patient s developing needs as determined by initial and ongoing assessments and goals (ABIKUS, p.21; SIGN130, p.22). In order to facilitate and achieve generalization of skills and strategies into daily living, rehabilitation should focus on meaningful activities for the patient and should include practice in the patient s own environment (ABIKUS, p.21). Communication Rehabilitation A person with moderate to severe traumatic brain injury, regardless of level of consciousness should be assessed by a speech language pathologist for cognitive communication difficulties (ABIKUS, p.23; SIGN130, p.30). 76 P a g e

77 Patients with severe communication disability should be assessed for and provided with appropriate alternative or augmentative communication (ABIKUS, p.23). The assessment and prescription of augmentative and alternative communication devices should be made by suitably qualified clinicians (speech language pathology for communication; occupational therapy for access to devices and writing aides) (ABIKUS, p.24). Where achievable communication goals have been identified, an appropriate treatment program designed by a speech language pathologist should be offered and monitored (ABIKUS, p. 23). A communication rehabilitation program should provide education and training of communication partners (ABIKUS, p. 23). A communication rehabilitation program should give the opportunity to patients to practice communication skills appropriate to the context in which a patient lives, works, studies, or socializes post discharge (ABIKUS, p, 24). Motor Function and Control Therapists (primarily physiotherapy and occupational therapy) need to be skilled in the physical management of neurological deficits and experienced in recognition and handling of associated cognitive and behavioural deficits, in addition to orthopedic or musculoskeletal disorders that may impact a patient s ability to engage in therapy sessions and carry over physical gains into daily living (ABIKUS, p.24). Individuals with moderate to severe ABI should be given opportunity to practice their motor skills outside of formal therapy (ABIKUS, p.24). 77 P a g e

78 When planning a program to improve motor control, the following should be considered to improve motor control and general fitness (ABIKUS, p.24): o Strength training focusing on functional tasks o Task-specific training o Exercise training to improve cardiorespiratory fitness o Gait re-education to improve mobility o Expertise should be available in specialized seating Sensory Impairment Individuals with moderate to severe ABI: should be screened for visual impairment and/or perceptual deficits (ABIKUS, p.25) with any visual impairment should be assessed by a team which includes an opthamologist and experts in rehabilitation for the visually impaired (ABIKUS, p. 25) with persistent visual neglect or field deficits should be offered retraining strategies (ABIKUS, p. 25) with hearing loss should be assessed and treated by an audiologist (ABIKUS, p. 25) should be screened for vestibular dysfunction and if present, should undergo a vestibular retraining program (ABIKUS, p.25) Optimizing Performance in Daily Living Tasks All individuals with ABI who have difficulties in activities of daily living should be assessed by an occupational therapist, nurse, or other health 78 P a g e

79 practitioner with expertise in brain injury and experience in this area (ABIKUS, p.25). All daily living tasks should be practiced in the most realistic and appropriate environment, with the opportunity to practice skills outside of therapy sessions (ABIKUS, p.25). Assessment and Management of Complications Spasticity: individuals with moderate to severe ABI with spasticity should be assessed and treated and provided with a coordinated plan for interdisciplinary management including (ABIKUS, p.26): o the identification and treatment of aggravating factors that include pain or infection o the use of specific treatment modalities that include serial casting or removable splints o the use of antispasmodic drugs (i.e. Baclofen, Tizanidine) including botulinum toxin where appropriate o consideration of a range of motion and positioning routine Depression: persons with moderate to severe ABI are at risk of future depression and should be monitored on an ongoing basis (ABIKUS, p.27). Pain: pain management protocols should be in place, which include (ABIKUS, p.27): o regular review and adjustment o handling, support and pain relief appropriate to an individual s needs o staff and caregivers should be educated about appropriate handling of paretic upper limbs during transfers, hypersensitivity and neurogenic pain 79 P a g e

80 Heterotopic Ossification: the interdisciplinary team should be aware of the possibility of heterotopic ossification (H.O.) and protocols should be in place for early detection and management (ABIKUS, p.28). Coma, Vegetative State and Minimal Conscious State All individuals with a diminished level of consciousness should be assessed by a team with specialized experience in profound brain injury to establish the level of awareness and interaction (ABIKUS, p.28). Where individuals remain in a coma or minimally conscious states, management in a specialized tertiary centre should be considered if the local services are unable to meet their needs for specialized nursing or rehabilitation (ABIKUS, p.29). Every brain-injured individual who remains unconscious or is unable to sit themselves up should have a graded program to increase tolerance to sitting and standing (ABIKUS, p.29). Vocational Rehabilitation Clinicians involved in brain injury rehabilitation should consider vocational needs and put patients in communication with relevant agencies as part of their routine planning, and refer where appropriate, to a specialist vocational rehabilitation program (ABIKUS, p.32; SIGN130, p.33). Leisure and Recreation All individuals should be assessed by a rehabilitation professional or team to identify (ABIKUS, p.32): 80 P a g e

81 o the level of participation in leisure activities (including indoor and outdoor pursuits) based on the individual s personal preferences o barriers or compounding problems which inhibit their engagement in such activities Individuals with difficulty engaging in leisure activities of their choice should be offered a goal directed community-based program aimed at increasing participation in leisure and social activities, in liaison with local volunteer organizations (ABIKUS, p.32). Family and Caregivers Rehabilitation programs should be developed in collaboration with family, caregivers or nursing staff to ensure that the program is carried over into daily activities (ABIKUS, p.33). Individuals who have assumed the caregiver role (e.g. family, paid caregivers) should be individually assessed by a member of the treating team (e.g. social worker) at regular intervals for the following (ABIKUS, p.33): o to establish their own needs and to increase the sustainability of the caring role o the care provided (e.g. quality, extent) o the need for support, including respite care o the need for training/education o caregiver s stress and mental health issues o the caregiver s capacity and opportunity to maintain previous roles Additional support should be provided for the caregiver/family including (ABIKUS, p.33; SIGN130, p.24): o crisis support 81 P a g e

82 o training and education for the caregiver role o training in behaviour management techniques when the individual with ABI has behavioural or personality changes o respite care Children and adolescents affected by a family member with brain injury may require referral to specialist support services through education, health, or social work (SIGN130, p.40). Transition Point: Confirm whether an ABI Patient Navigator* has been assigned to the patient and is included in the design of the discharge plan. If required and no ABI Patient Navigator has been assigned, refer the patient to Intake*. (* NEW system elements yet to be designed) Discharge Planning Individuals may be transferred to the community once appropriate specialized rehabilitation and support can be continued without delay (ABIKUS, p.30). Preparing family and caregivers and the individual with an ABI for community transition should include (ABIKUS, p.30, SIGN130, p.44): o assessment of the discharge destination environment and support available a pre-discharge home visit for individuals who require one o provision of any equipment or adaptations that are required o training of caregivers or family in the use of equipment o education for patients and family or caregivers about relevant formal and informal resources and how to access these resources 82 P a g e

83 Upon transfer or discharge, there should be a written report which includes (ABIKUS, p.30; SIGN130, p.43): o the results of recent assessments o a summary of progress made and/or reasons for discharge o recommendations for future intervention o current needs o key contacts and referrals made o responsible services/professionals o sources for continued information, support, advice Copies of both the care plan and the discharge report should be provided to the patient/family/caregivers and all professionals relevant to the individual s current stage of rehabilitation, especially the primary care provider (ABIKUS, p30; SIGN130, p.43). Discharge Destinations It is recognized that there is a continuum of discharge options for persons living with ABI. It is possible for an individual to move between these locations (for example, transitional care to one s own home). Community Reintegration and Long Term Living Support There are a broad range of community-based resources that may be wrapped around a person with ABI. Responsibility of care provider: accessible, coordinated, and individualized care that facilitates seamless transitions for the individual as they move within organizations and between care providers. 83 P a g e

84 Outcome: Successful community living for the person with ABI and their family/caregiver(s) in the home of their choice. Care Setting Service Community and Long Term Living in: o Home o Supportive Care o Transitional Care o Retirement Home o Long Term Care o Complex Continuing Care Supports Include: o Primary Care Provider (including specialized support through Health Links or the Nurse Practitioner Specialized ABI Services) o Community Care Access Centre (CCAC) o Brain Injury Association o Day Programs o Mental Health o Addictions o Community Support Services Transition Point: Confirm whether an ABI Patient Navigator* has been assigned to the patient. If not and required, refer the patient to Intake*. Confirm receipt of relevant discharge reports from the rehabilitative care provider. (*NEW system elements yet to be designed) Care Plan Development Care plans should be agreed to jointly between the individual with an ABI and family/caregivers and service providers (ABIKUS, p.30; SIGN130, p.44). A timely process for review of the care plan should be determined (ABIKUS, p.30; SIGN130, p.44). Family and Caregivers Individuals who have assumed the caregiver role (e.g. family, paid caregivers) should be individually assessed by a member of the treating team (e.g. social worker) at regular intervals for the following (ABIKUS, p.33): o to establish their own needs and to increase the sustainability of the caring role o the care provided (e.g. quality, extent) o the need for support, including respite care o the need for training/education o caregiver s stress and mental health issues o the caregiver s capacity and opportunity to maintain previous roles 84 P a g e

85 Additional support should be provided for the caregiver/family including (ABIKUS, p.33; SIGN130, p.24): o crisis support o training and education for the caregiver role o training in behaviour management techniques when the individual with ABI has behavioural or personality changes o respite care Children and adolescents affected by a family member with brain injury may require referral to specialist support services through education, health, or social work (SIGN130, p.40). Vocational Needs Individuals seeking a return to employment, education or training should be assessed by a Professional or team trained in vocational needs following brain injury. Assessment should include (ABIKUS, p.32): o evaluation of their individual vocational and/or educational needs o identification of difficulties which are likely to limit the prospects of a successful return to work and appropriate intervention to minimize them o direct liaison with employers (including occupational health services when available), or education providers to discuss needs and the appropriate action in advance of any return o evaluation of environmental factors, workplace, psychological aspects including social environment and work culture o verbal and written advice about their return, including arrangements for review and follow up 85 P a g e

86 References ABIKUS (Acquired Brain Injury Uptake Strategy) (2007). ABIKUS evidence based recommendations for rehabilitation of moderate to severe acquired brain injury. Retrieved from Health Improvement Scotland (2013). SIGN 130, Brain injury rehabilitation adults: A national guideline. Retrieved from Toronto Acquired Brain Injury Network (2006). A framework for the future planning of publicly funded acquired brain injury services in Toronto. Retrieved from %28Mar- 2006%29.pdf 86 P a g e

87 APPENDIX G 87 P a g e

88 APPENDIX H Waterloo Wellington Adult ABI Integrated Rehabilitative Care Pathway Gap Analysis Template Recommendation Source 1. GENERAL PRINCIPLES 1.1 Care should follow a client centred approach responding to the ABIKUS, p.16 needs and choices of persons with ABI as they evolve over time. 1.2 Service providers for persons with moderate to severe ABI should ABIKUS, p.16 be given specialized training to develop competencies in evaluation and management related to moderate to severe ABI. This should be provided on a ongoing basis. 1.3 Within and between service networks, there should be a case ABIKUS, p.16 management or equivalent system, which gives persons with brain injuries and their family/caregivers an identifiable guide and advocate (navigator) through the continuum of care. 1.4 Interdisciplinary protocols or integrated care pathways should be in place for management of common problems. ABIKUS, p.16 Recommendation Implemented Yes No Sometimes Comment Recommendation 2. EARLY ASSESSMENT, TREATMENT, AND CARE 2.1 The management of ABI patients should be guided by clinical assessments and protocols based on the Glasgow Coma Scale score. Source ABIKUS, p. 16 Recommendation Implemented Yes No Sometimes Comment 2.2 People with ABI should be assessed for functional deficits in activities of daily living and be assessed for specific impairments in: bowel and bladder control speech and swallowing motor control sensory function language production and comprehension cognition memory emotion potential medical and psychiatric comorbidities that have symptomatic overlap with ABI ABIKUS, p Patients presenting with non-specific symptoms following mild traumatic SIGN130, p 8 brain injury should be reassured that the symptoms are benign and likely to settle within three months. 2.4 Every patient with a moderate to severe ABI should have access to early ABIKUS, p.16 SIGN130, p.8 (timely) specialized interdisciplinary rehabilitation services. 88 P a g e

89 Recommendation 3. BEHAVIOURAL REHABILITATION 3.1 Individuals with brain injury and severe behavioural problems should be provided with access to specialized psychological assessments and behavioural management services and interventions to assist in the management of their behavioural difficulties, including substance abuse. ABIKUS, p Staff should be trained in specific behavioural change strategies, especially in understanding of brain-behaviour relationships, and these should be applied consistently. ABIKUS, p Patients should be given information, advice and the opportunity to talk about the impact of brain injury on their lives with someone experienced in managing the emotional impact of acquired brain injury. 3.4 When necessary, an assessment by a medical specialist (e.g. neuropsychiatrist, behavioural neurologist, physiatrist) should be made to differentiate neurobehavioural difficulties from symptoms of functional illness (e.g. seizures, mood, anxiety disorders, personality disorders, metabolic disorders, and medication adverse effects) Source ABIKUS, p. 19 ABIKUS, p. 20 Recommendation Implemented Yes No Sometimes Comment Recommendation Source 4. COGNITIVE REHABILITATION 4.1 All patients after moderate to severe ABI should be referred for ABIKUS, p. 21 neuropsychology, occupational therapy and speech language assessment to evaluate cognitive functioning. 4.2 The treatment team should be multidisciplinary and is based on the individual's developing needs as determined by initial and ongoing ABIKUS, p. 21 SIGN130, p.22 assessments and goals. 4.3 In order to facilitate/achieve generalization of skills/strategies to daily activities, rehabilitation should: Focus on engaging in activities that are perceived as meaningful. Include therapy interventions in the affected person's own environment and/or application to the person's life. ABIKUS, p. 21 Recommendation Implemented Yes No Sometimes Comment 89 P a g e

90 Recommendation 5. COMMUNICATION REHABILITATION 5.1 A person with moderate to severe traumatic brain injury regardless of level of consciousness should be assessed by a speech-language pathologist for cognitive communication difficulties in accordance to existing practice guidelines of speech language pathologists and audiologists. 5.2 Patients with severe communication disability should be assessed for and provided with appropriate alternative or augmentative communication aids. 5.3 A person with ABI who has communication difficulties where achievable goals can be identified should be offered an appropriate treatment program by a speech language pathologist with monitoring of progress. Source ABIKUS, p. 23 SIGN130, p.30 ABIKUS, p. 23 ABIKUS, p A communication rehabilitation program should provide education and ABIKUS, p. 23 training of communication partners. 5.5 A communication rehabilitation program should give the opportunity to rehearse communication skills in situations appropriate to the context in which the patients will live/work/study/socialize after discharge. ABIKUS, p The assessment and prescription of, augmentative and alternative communication devices should be made by suitably accredited clinicians: speech language pathologists (for communication), and occupational therapists (for access of devices, writing aides, etc.). ABIKUS, p. 24 Recommendation Implemented Yes No Sometimes Comment Recommendation 6. REHABILITATION OF MOTOR FUNCTION AND CONTROL 6.1 Therapists (primarily physiotherapy and occupational therapy) need to be skilled in the physical management of neurological deficits and experienced in recognition and handling of associated cognitive and behavioural deficits, as well as orthopedic or associated musculoskeletal disorders, which may impact on the patient's ability to engage and cooperate in therapy sessions and to carry over physical gains into daily activities. 6.2 Persons with moderate to severe ABI should be given opportunities to practice their motor skills outside of formal therapy. Source ABIKUS, p. 24 ABIKUS, p. 24 Recommendation Implemented Yes No Sometimes Comment 6.3 When planning a program to improve motor control, the following should be considered to improve motor control and general fitness: Strength training focusing on functional tasks. Task-specific training Exercise training to improve cardiorespiratory fitness Gait re-education to improve mobility Expertise should be available in specialized seating ABIKUS, p P a g e

91 Recommendation Source 7. SENSORY IMPAIRMENT 7.1 Persons with moderate to severe ABI should be screened for visual impairment and/or perceptual deficits. ABIKUS, p Persons with moderate to severe ABI with any visual impairment should be assessed by a team, which includes: Opthamologists Persons with expertise in rehabilitation for the visually impaired ABIKUS, p Persons with modertate to severe ABI with persistent visual neglect or field deficits should be offered specific retraining strategies. ABIKUS, p Persons with modertate to severe ABI with hearing loss should be assessed and treated by an audiologist. ABIKUS, p Persons with a moderate to severe ABI should be screened for vestibular dysfunction and if present, should undergo a vestibular retraining program. ABIKUS, p. 25 Recommendation Implemented Yes No Sometimes Comment 91 P a g e

92 Recommendation Source Recommendation Implemented Yes No Sometimes 8. OPTIMIZING PERFORMANCE IN DAILY LIVING TASKS 8.1 All people with ABI who have difficulties in activities of daily living should be assessed by an occupational therapist, nurse or other health care practitioner with expertise in brain injury and experience in this area. ABIKUS, p All daily living tasks should be practiced in the most realistic and appropriate environment, with the opportunity to practice skills outside therapy sessions. ABIKUS, p. 25 Comment Recommendation Source Recommendation Implemented Yes No Sometimes 9. ASSESSMENT AND MANAGEMENT OF COMPLICATIONS 9.1 Spasticity: Persons with moderate to severe ABI with spasticity should be assessed and treated and provided with a coordinated plan for interdisciplinary management including: Identify and treat aggravating factors such as pain and infection. The use of specific treatment modalities such as serial casting or removable splints. The use of antispasmodic drugs (ie. Baclofen, Tizanidine) including botulinum toxin where appropriate. Rehabilitation should consider a range of motion and positioning routine. ABIKUS, p Depression: Persons with moderate to severe ABI are at risk of future depression and should be monitored on an ongoing basis for development of depression. ABIKUS, p Pain: pain management protocols should be in place, which include: Regular review and adjustment Handling, support and pain relief appropriate to the individual needs Staff and caregivers should be educated about appropriate handling of paretic upper limbs during transfers, hypersensitivity and neurogenic pain. ABIKUS, p Heterotopic Ossification: the interdisciplinary team should be aware of the possibility of heterotopic ossification (HO) and protocols should be in place for early detection and management. ABIKUS, p. 28 Comment 92 P a g e

93 Recommendation Source Recommendation Implemented Yes No Sometimes 10. COMA, VEGETATIVE STATE AND MINIMAL CONSCIOUS STATE 10.1 For all patients with a diminished level of consciousness, assessment should be undertaken by a team with specialized experience in profound brain injury to establish the level of awareness and interaction. ABIKUS, p Where patients remain in a coma or minimally conscious states, management in a specialized tertiary centre should be considered if the local services are unable to meet their needs for specialized nursing or rehabilitation. ABIKUS, p Every brain-injured patient who remains unconsious or is unable to sit themselves up should have a graded program to increase tolerance to sitting and standing. ABIKUS, p. 29 Comment Recommendation Source 11. VOCATIONAL REHABILITATION 11.1 Patients seeking a return to employment, education or training ABIKUS, p. 32 should be assessed by a professional or team trained in vocational needs following brain injury. Assessment should include: Evaluation of their individual vocational and/or educational needs. Identification of difficulties which are likely to limit the prospects of a successful return and appropriate intervention to minimize them. Direct liason with employers (including occupational health services when available), or education providers to discuss needs and the appropriate action in advance of any return. Evaluation of environmental factors, workplace, psychological aspects including social environment and work culture Clinicians involved in brain injury rehabilitation should consider vocational needs and put patients in touch with the relevant agencies as part of their routine planning, and refer where appropriate, to a specialist vocational rehabilitation program. ABIKUS, p. 32 SIGN130, p In setting up placement into a long term job, monitoring should be provided for at least six months or longer to respond to any emergent difficulties, with a follow-up thereafter to establish the long-term viability of the placement. ABIKUS, p. 32 Recommendation Implemented Yes No Sometimes Comment 93 P a g e

94 Recommendation 12. LEISURE AND RECREATION 12.1 All patients should be assessed by a rehabilitation professional or team to identify: Level of participation in leisure activities (including indoor and outdoor pursuits) based on the individual's personal preferences. Barriers or compounding problems which inhibit their engagement in such activities Patients with difficulty undertaking leisure activities of their choice should be offered a goal directed community-based program aimed at increasing participation in leisure and social activities, in liaison with local volunteer organizations. Source ABIKUS, p. 32 ABIKUS, p. 32 Recommendation Implemented Yes No Sometimes Comment Recommendation 13. FAMILY AND CAREGIVERS 13.1 Rehabilitation programs should be developed in collaboration with ABIKUS, p. 33 family, caregivers or nursing staff to ensure that the program is carried over into daily activities Individuals who have assumed the caregiver role (eg. family members, paid caregivers) should be individually assessed by a member of the treating team (e.g. social worker), at regular intervals thereafter, for (but not limited to) the following: To establish their own needs and to increase the sustainability of the caring role. The care provided (e.g. quality, extent). The need for support, including respite care. The need for training/education. The caregiver's stress and mental health issues. The caregiver's capacity and opportunity to maintain previous roles (note that it should not be assumed that family members will be willing to take on the caregiver role). ABIKUS, p Additional support should be provided for caregiver/family, including: Crisis support. Training and education for the caregiver role. Training in behaviour management techniques when the person with traumatic brain injury has behavioural and personality changes resulting from the traumatic brain injury. Respite care. Source ABIKUS, p. 33 SIGN130, p.24 Recommendation Implemented Yes No Sometimes Comment 13.4 Family and caregivers should be provided with access to ongoing support SIGN130, p.40 when the patient with brain injury is living in the community Children and adolescents affected by a family member wtih brain injury may require referral to specialist support services through education, health, or social work. SIGN130, p P a g e

95 Recommendation 14. DISCHARGE PLANNING 14.1 Patients may be transferred back to the community, once appropriate specialized rehabilitation and support needed can be continued in that environment without delay Preparing family/caregivers and patient for community transition should include: Assessment of discharge destination environment and support available, including a pre-discharge home visit for individuals who require one. Provision of any equipment and adaptations that are required. Training of caregivers/family in the use of equipment and in managing the patient to ensure patient safety in the home environment. Educating patients and family /caregivers about relevant formal and informal resources and how to access these resources including voluntary services and self-help groups. ABIKUS, p. 30 ABIKUS, p. 30 SIGN130, p Care plans should be agreed jointly between the patient and family/caregivers and health professionals from the services involved in the transition. A timely process for review of the care plan should be determined (e.g. usually 3-6 months post discharge). ABIKUS, p. 30, SIGN130, p Upon transfer or discharge, there should be a written report which includes: The results of all recent assessments. A summary of progress made and/or reasons for case closure. Recommendations for future intervention. Current needs. Key contacts and referrals made. Responsible services/professionals. Sources for continued information, support and advice. Source ABIKUS, p. 30 SIGN130, p Copies of both the care plan and the discharge report should be provided to the patient/family/caregivers and all professionals relevant to the patient's current stage of rehabilitation, especially the General Practitioner. ABIKUS, p. 30 SIGN130, p.43 Recommendation Implemented Yes No Sometimes Comment 95 P a g e

96 Recommendation Source 15. COMMUNITY REHABILITATION 15.1 Community rehabilitation services for patients with brain injuries SIGN130, p.39 should include a wide range of disciplines working within a coordinated interdisciplinary model/framework and direct access to generic services through patient pathways. At a minimum, the service should include: specialist brain injury nurses physiotherapists occupational therapists speech language therapists clinical psychologists specialist social workers dietitians technical instructors generic assistants consultants in rehabilitation medicine access to other consultants for neurology, neurosurgery, neuropsychology, neuropsychiatry, mental health 15.2 Each patient should have a named worker. SIGN130, p.39 Recommendation Implemented Yes No Sometimes Comment 96 P a g e

97 APPENDIX I Attendees List: February 26, 2015 Consultation Day Sector Organization Role Attendee PRIMARY CARE ACUTE REHABILITATIVE CARE TERTIARY REHAB COMMUNITY Kitchener Downtown Community Health Centre Director Client Services Stephen Gross ABI NP Pam Rafter Mount Forest Family Health Team OT Cynthia Deen Langs Farm Community Health Centre Nurse Practitioner Erin Okanik Grand River Hospital - Acute Program Director - Stroke Jennifer Breaton Stroke Navigator Julie Weir Resource Nurse - Acute Stroke Unit Joanne Belkwell OT Natalie Leuty SLP Jenna Merritt Wellington Health Care Alliance PT Denise Fess Guelph General Hospital - Acute Physiotherapist/Practice Lead Eloise Umpleby Cambridge Memorial Hospital - Inpatient Rehabilitation Occupational Therapist Julie Cummings St. Joseph's Health Centre Manager - Inpatient Rehab Matt Smith Manager - Outpatient Rehab Wayne Lew OT - inpatient rehab Ashley Finlaysen SLP - Aphasia Program Antonella Samson Grand River Hospital Clinical Manager - Inpatient Rehab Andrea Guth Nurse Practitioner - Inpatient Rehab Donna Gill Physician - Inpatient Rehab Anne Crowe OT - inpatient rehab Shawna Caza SLP - inpatient rehab Olivia Hazelden Therapist - Neurorehab Clinic Angela Tuffnail Hamilton Health Sciences Program Director Rehab/CCC/Seniors Health Jennifer Kodis CCAC Manager, Client Services Maria Fage Director, Patient Services Dana Khan Community Stroke Team OT - St. Elizabeth Shannon Gibson Community Stroke Team OT - Care Partners Laura Brennan Community Support Services Community Care Concepts - Executive Director Cathy Harrington SJHC - Acquired Brain Injury Day Program Director Tiffany Smith Clinical Resource Worker Livia Ballenstrin Traverse Independence CEO Toby Harris Clinical Consultant Jean Taylor ABI Intake Coordinator Catherine Christian Canadian Mental Health Association Manager Seniors Services Cathy Sturdy Smith System Coordinator - WW Mental Health and Addictions Network Gerard Reuss CONSUMER Sahver Kuzucuoglu 97 P a g e

98 APPENDIX J Consultation Day Case Studies Case Study #1 Initial History: 30 year old female teacher, works full time Married, husband works full time Retired parents live in town Sustained a closed head injury while snowboarding Following transfer to the local community hospital in Waterloo Wellington, a CT scan identifies that she has an acute epidural hematoma. She is subsequently transferred to Hamilton for neurosurgical assessment and treatment. Significant damage identified primarily in the temporoparietal region on the left side of her brain. She required a craniotomy to evacuate the hematoma Following a 10 day stay in tertiary care, she was repatriated to an inpatient medicine bed in a Waterloo Wellington hospital. Deficits: Receptive aphasia (difficulty understanding speech) Agraphia (inability to write or spell) Short term memory Right sided weakness and numbness Aggression when staff approach her to engage in personal care Discharge Destination: Home Case Study #2 Initial History: 70 year old male Homeless for the last 5 years Adult daughter lives in town but has been estranged from her father A left side frontoparietal subdural hematoma as a result of a vicious attack outside of a local shelter History of alcohol abuse, anxiety, and depression 98 P a g e

99 Transferred to Hamilton Health Sciences for neurosurgical intervention. Comatose for 10 days post-surgery. Level of consciousness improved to Level 4 (confused, agitated response) using the Rancho Los Amigos Scale on the day of transfer to an acute inpatient medicine bed in a Waterloo Wellington hospital. Constant care has been assigned 24/7 Hospital admission 12 months prior for Wernicke s encephalopathy (confusion, reduced muscle coordination) Deficits/Care Requirements: Right side hemiplegia (weakness), Chedoke McMaster Stage 3 Arm (marked spasticity) and Leg (hip flexion to 90 degrees, full extension) Poor postural control Incontinent bowel and bladder Gastrostomy tube (feeding) Stage 4 wound on coccyx requiring a VAC dressing (complex wound and treatment) Discharge Destination: Long term care Case Study #3 Initial History: 42 year old male, worked fulltime as a bus driver, currently receiving disability benefits through his employer Married father of 3 children (all under 12 years) Supportive wife works full time, no other family supports locally Recently diagnosed with post-concussion syndrome. History of playing a variety of contact supports as a child and young adult. Twelve months ago, he was body checked into the boards while playing recreational hockey. He reported having hit his head both against the glass and the ice when he fell. He did not seek medical attention initially. Recent CT scan shows no abnormalities. No formal community supports. Recent arrest for impaired driving. With the encouragement of a co-worker, his wife has called 310 CCAC looking for help. Deficits/Care Requirements: Significant sensitivity to light has resulted in a need to wear dark glasses during daytime hours Persistent ringing in his ears Poor appetite, has lost 25 lbs over the last year 99 P a g e

100 Complains of poor short term memory and concentration Limited tolerance for any noise Wife reports that she believes that her husband is depressed, however he denies any concerns with his mood. Resorts to bed rest for days when symptoms worsen. Most recently required three days of bed rest after visiting the grocery store. Unable to participate in activities at home (cooking, cleaning, laundry, child care) Discharge Destination: Home Case Study #4 Initial History: 86 yr old male married, frail 83 year old spouse three supportive children live in town no prior CCAC or community support service involvement lives in own two storey home fell from ladder while cleaning out eaves trough sustained fractured left arm, ribs, and subdural hematoma in the left frontotemporal region transferred to Hamilton Health Sciences for neurosurgical assessment and intervention to evacuate the hematoma repatriated to acute inpatient medicine bed at a Waterloo Wellington hospital 15 days later Deficits/Care Requirements: right side weakness in arm and leg, stage 5 Chedoke McMaster Stroke Assessment inattention expressive aphasia (difficulty with verbal communication) impaired memory reduced inhibition mobilizing independently with wheelchair and encouragement walking short distances with assist of two Discharge Destination: home with support 100 P a g e

101 Case Study #5 Initial History: 55 year old male Self-employed contractor Lives alone in two storey home, no immediate family living in town, brother/substitute decision maker lives in Boston Cardiac arrest following open heart surgery led to brain injury and 7 days in a coma History of depression and moderate alcohol use Transferred from ICU to an acute medicine unit and is actively exit seeking (has been found wandering the grounds of the hospital twice) Deficits/Care Requirements: Impaired memory Poor concentration Anomia (difficulty using words) Ataxic gait (poor coordination with walking) Generalized weakness Irritable Seizures Discharge Destination: Home with supports Instructions: Step 1 Using the materials available at your table, map what you would expect this individual s journey should be when you apply the recommended rehabilitative care best practices. Consider: How the list of deficits may impact her function. What is necessary for a seamless and timely transition between the tertiary/acute/postacute/community sectors? What role would the single point of intake and system navigator fulfill? What elements of rehabilitative care will be required (i.e. cognitive, communication, motor, etc.) How might family and caregiver needs be met? 101 P a g e

102 What key services will be necessary to support community reintegration and long term living...be specific about the agency and program you will include (ie. the Opportunity Centre). Step 2 Discuss the following questions: 1. Was the narrative pathway helpful to you in identifying the key requirements for this individual s journey? What would you add or edit? 2. Did the diagram of the pathway adequately reflect the individual s journey? What would you add or delete? 3. Now that you have designed the ideal rehabilitative care journey for this individual, what major gaps have you flagged in our current system of care for individuals with ABI? 4. Identify your top three recommendations/priorities for the ABI Steering Committee as they develop a work plan for the next 1-2 years. 102 P a g e

103 APPENDIX K Completed Gap Analysis 1. GENERAL PRINCIPLES Recommendation Care should follow a client centred approach responding to the needs and choices of persons with ABI as they evolve over time. Service providers for persons with moderate to severe ABI should be given specialized training to develop competencies in evaluation and management related to moderate to severe ABI. This should be provided on a ongoing basis. 1.3 Within and between service networks, there should be a case management or equivalent system, which gives persons with brain injuries and their family/caregivers an identifiable guide and advocate (navigator) through the continuum of care. 1.4 Interdisciplinary protocols or integrated care pathways should be in place for management of common problems. Source ABIKUS, p.16 ABIKUS, p.16 ABIKUS, p.16 ABIKUS, p.16 Recommendation Implemented Yes No Sometimes X X X X Comment We attempt to start with a client centred approach. Over time we are not able to maintain that because of a gap in services. The funding model requires focused attention. Individuals try; system lacks infrastructure. Missing elements. Client-centred from a discipline standpoint but not necessarily from a system stand point. Improved communication between agencies/transparency. Understanding expectations for collaboration. Small population and complexity of patient needs. Resource limitations, push back in the system, no established steams or pathways. Silo effect in sectors combined with limited knowledge. Not currently. Complex behavioural management issues take a certain degree of specialty. This is lacking. Consistency for approach across disciplines is needed. Each injury is unique. Mental Health and addictions sector is limited. Certain agencies have that knowledge. Sometimes support available via Hamilton or the ABI NP. RHP brings competencies but no gold standard. OBIA Level 1 used as base training for St. Joseph's and Traverse Community Programs. This does not occur system wide. Absent in system except partially at Traverse and St. Josephs Nothing specific exists across the system. 103 P a g e

104 Recommendation 2. EARLY ASSESSMENT, TREATMENT, AND CARE 2.1 The management of ABI patients should be guided by clinical assessments and protocols based on the Glasgow Coma Scale score. 2.2 People with ABI should be assessed for functional deficits in activities of daily living and be assessed for specific impairments in: bowel and bladder control speech and swallowing motor control sensory function language production and comprehension cognition memory emotion potential medical and psychiatric comorbidities that have symptomatic overlap with ABI 2.3 Patients presenting with non-specific symptoms following mild traumatic brain injury should be reassured that the symptoms are benign and likely to settle within three months. 2.4 Every patient with a moderate to severe ABI should have access to early (timely) specialized interdisciplinary rehabilitation services. Source ABIKUS, p. 16 ABIKUS, p. 17 SIGN130, p 8 ABIKUS, p.16 SIGN130, p.8 Recommendation Implemented Yes No Sometimes X X X X Comment GCS does not inform practice in inpatient rehab. It is used in acute care. There may be an opportunity to share in primary care. Except neurosurgery, there is no clinical assessment. GCS in EMS and ER but not utilized. Some acute sites don't have neuropsych. Mild to moderate in community is not completed consistently. Cognitive communication not addressed. Inpatient and outpatient rehab. Inter RAI and RAI CHA and CH and screening function. Need improvement in psychiatric compatibility. Need better links to mental health. Query psychiatric comorbidities are missed in assessments. Some of these assessments are taking place. Re-assessment throughout the journey might not be as thorough. Cognitive assessments are sometimes lacking. FIM is used for inpatients only. Primary care can struggle with these early assessments if a person enters there first. Well established concussion protocol for kids...? Need for one for adult population. Moderate ABI is least serviced population - SCAT tool. mtbi is not always associated with concussion at primary care level. It is usually the client that is advocating back to primary care. Access to the Hamilton program available with specific criteria. Some individuals served but nothing system wide. Waitlists are extensive for all programs. 104 P a g e

105 Recommendation 3. BEHAVIOURAL REHABILITATION 3.1 Individuals with brain injury and severe behavioural problems should be provided with access to specialized psychological assessments and behavioural management services and interventions to assist in the management of their behavioural difficulties, including substance abuse. 3.2 Staff should be trained in specific behavioural change strategies, especially in understanding of brain-behaviour relationships, and these should be applied consistently. 3.3 Patients should be given information, advice and the opportunity to talk about the impact of brain injury on their lives with someone experienced in managing the emotional impact of acquired brain injury. 3.4 When necessary, an assessment by a medical specialist (e.g. neuropsychiatrist, behavioural neurologist, physiatrist) should be made to differentiate neurobehavioural difficulties from symptoms of functional illness (e.g. seizures, mood, anxiety disorders, personality disorders, metabolic disorders, and medication adverse effects) Source ABIKUS, p. 19 ABIKUS, p. 19 ABIKUS, p. 19 ABIKUS, p. 20 Recommendation Implemented Yes No Sometimes X X X X Comment Access to service is not coordinated. SGS is completing. No streams of care currently exist and are needed. This recommendation happens inconsistently. Consultation model of psychiatric supports reduces ongoing care. Not occuring in acute. No funded psychological services. Substance use and brain injury education lacking. Dependent on the training of staff. If a patient is referred to Hamilton, there is access through the crisis team. There are gaps in community services. There may be an opportunity to access Behaviour Supports Ontario for responsive behaviours. DSO and GRC have services and mental health - often behaviour blamed on personality of individual and not understood as a function of the brain injury. Rancho scores not utilized or well understood. Training is discipline specific. Difficult to get certain disciplines to think in terms of behavioural change. Not a coordinated pathway. In hospital, SW completes if referred. No referral consistency. Patients can be missed. Aphasia program is completing if referred. Flags out on Abuse homelessness. Local counselling services are not aware of ABI. Social Work services for inpatients are limited to time they are there. Financial barrier. Client is currently responsible for advocating for this. Referral to specialists but no ABI trained. Behavioural rehab is not offered in WW as far as we know. Sometimes we have access to the necessary consultants. Gaps in neuropsych access for consultation. Access to specialists is limited or out of town. Long waitlists. Requires admission to acute/tertiary/rehab inpatient services. Difficult to get this when you are coming from the community. There is a lack of awareness of what services are currently available and what they provide. 105 P a g e

106 Recommendation 4. COGNITIVE REHABILITATION 4.1 All patients after moderate to severe ABI should be referred for neuropsychology, occupational therapy and speech language assessment to evaluate cognitive functioning. 4.2 The treatment team should be multidisciplinary and is based on the individual's developing needs as determined by initial and ongoing assessments and goals. 4.3 In order to facilitate/achieve generalization of skills/strategies to daily activities, rehabilitation should: Focus on engaging in activities that are perceived as meaningful. Include therapy interventions in the affected person's own environment and/or application to the person's life. Source ABIKUS, p. 21 Recommendation Implemented Yes No Sometimes ABIKUS, p. 21 SIGN130, p.22 X ABIKUS, p. 21 X X Comment Neuropsychology missing. Very limited OHIP funded resource that is not available in current rehab setting. Dependent upon provider. Not all OT is cognitive focused. Aphasia is often referred and inpatient and HHS are options. Services tend to be siloed and not sharing resources. Majority of moderate to severe are referred to Hamilton to have this take place but they are waiting a long time. No consistent disciplines Available in inpatient rehab but less so in acute care or community. Inpatient sometimes has this occur and HHS inpatient offers this service. Hospital teams are multidisciplinary. Sometimes community teams are multidisciplinary. Well done in inpatient rehab but there is a gap in the community. Traverse Independence and CCAC do this sometimes and can be considered in Discharge Planning. Discussion takes place to attempt to simulate environment at home - usually within inpatient services...it is difficult to practice public transit prior to discharge. 106 P a g e

107 Recommendation 5. COMMUNICATION REHABILITATION 5.1 A person with moderate to severe traumatic brain injury regardless of level of consciousness should be assessed by a speech-language pathologist for cognitive communication difficulties in accordance to existing practice guidelines of speech language pathologists and audiologists. ABIKUS, p. 23 SIGN130, p Patients with severe communication disability should be assessed for and provided with appropriate alternative or augmentative communication aids. 5.3 A person with ABI who has communication difficulties where achievable goals can be identified should be offered an appropriate treatment program by a speech language pathologist with monitoring of progress. 5.4 A communication rehabilitation program should provide education and training of communication partners. 5.5 A communication rehabilitation program should give the opportunity to rehearse communication skills in situations appropriate to the context in which the patients will live/work/study/socialize after discharge. 5.6 The assessment and prescription of, augmentative and alternative communication devices should be made by suitably accredited clinicians: speech language pathologists (for communication), and occupational therapists (for access of devices, writing aides, etc.). Source ABIKUS, p. 23 ABIKUS, p. 23 ABIKUS, p. 23 ABIKUS, p. 24 ABIKUS, p. 24 Recommendation Implemented Yes No Sometimes X X X X X X Comment Limited availability outside of Hamilton. Depends on referral source and the SLP's level of comfort. There is no automatic referral. Not always referred. Swallowing referrals are completed usually but not cognitive communication. Coma stim. ignored. Resources are prioritized. Referrals to SLP might not happen if the primary issue isn't speech related. Limited resources. Augmentative Communication available at Freeport. The stroke pathway is increasing awareness of communication impairment. If assessed, this may occur. Education, client and family supports need training and resources. Many road blocks. Clinic assessment is needed by SLP. Depends on referral source and the SLP's level of comfort. There is no automatic referral. Yes, assuming they are properly assessed. Augmentative communication clinic at Freeport. Gap in cognitive communications. Yes, assuming they are properly assessed. SLPs are providing education to partners if they know they are in the program. If communication is lacking, might not be happening. Regional Aphasia program provides education through SLP to partner agencies. Some opportunity through home care SLP via St. Elizabeth's. Attempted outpatient carryover. Difficult to do when inpatient to put into context. Flow/hand off is limited. Flow tends to be one way. This may take place in the community when knowledge and partnerships exist..not everywhere. Augmentative communication available at Freeport. Government mandated through ADP assuming referred. 107 P a g e

108 Recommendation 6. REHABILITATION OF MOTOR FUNCTION AND CONTROL 6.1 Therapists (primarily physiotherapy and occupational therapy) need to be skilled in the physical management of neurological deficits and experienced in recognition and handling of associated cognitive and behavioural deficits, as well as orthopedic or associated musculoskeletal disorders, which may impact on the patient's ability to engage and cooperate in therapy sessions and to carry over physical gains into daily activities. ABIKUS, p Persons with moderate to severe ABI should be given opportunities to practice their motor skills outside of formal therapy. 6.3 When planning a program to improve motor control, the following should be considered to improve motor control and general fitness: Strength training focusing on functional tasks. Task-specific training Exercise training to improve cardiorespiratory fitness Gait re-education to improve mobility Expertise should be available in specialized seating Source ABIKUS, p. 24 ABIKUS, p. 24 Recommendation Implemented Yes No Sometimes X X X Comment Not consistently available in the community. Opportunity to develop specialized ABI team that would be available to consult. Physical safety is done well and behavioural and cognitive issues are weak with limited funds and resources. Opportunity Centre and St. Joe's day programs do this in the community. Gaps in access and transportation. Inpatient, Day Program, and Outreach. If supervision is required, this type of program is limited. Neuro Fit for Function available at the YMCA in Kitchener/Cambridge/Guelph. Specialized seating clinics are a gap. Definitely happens in the hospitals and outpatient services. Recommendation 7. SENSORY IMPAIRMENT 7.1 Persons with moderate to severe ABI should be screened for visual impairment and/or perceptual deficits. Source ABIKUS, p Persons with moderate to severe ABI with any visual impairment should be assessed by a team, which includes: Opthamologists Persons with expertise in rehabilitation for the visually impaired ABIKUS, p Persons with modertate to severe ABI with persistent visual neglect or field deficits should be offered specific retraining strategies. ABIKUS, p Persons with moderate to severe ABI with hearing loss should be assessed and treated by an audiologist. ABIKUS, p Persons with a moderate to severe ABI should be screened for vestibular dysfunction and if present, should undergo a vestibular retraining program. ABIKUS, p. 25 Recommendation Implemented Yes No Sometimes X X X X X Comment Needs to be formalized through a linkage with University of Waterloo School of Optometry. Resources in the community outpatient services, OSAT, KDCHC OT assessments include both of these. Not coordinated and dependent on family doctor referral. On occasion seen as an inpatient and referred to opthamology This requires referral to low vision clinic. Is there specific assessment available in Hamilton? Usually this occurs during inpatient assessments with the OT. May require assistance of specialists and this is not always happening. Is there specific assessment available in Hamilton? Some outpatient resources in vestibular training. Completely absent. Some physios are trained in this. This may not be screened...dependent on therapist. 108 P a g e

109 Recommendation Source 8. OPTIMIZING PERFORMANCE IN DAILY LIVING TASKS 8.1 All people with ABI who have difficulties in activities of daily living should be assessed by an occupational therapist, nurse or other health care practitioner with expertise in brain injury and experience in this area. ABIKUS, p All daily living tasks should be practiced in the most realistic and appropriate environment, with the opportunity to practice skills outside therapy sessions. Recommendation 9. ASSESSMENT AND MANAGEMENT OF COMPLICATIONS 9.1 Spasticity: Persons with moderate to severe ABI with spasticity should be assessed and treated and provided with a coordinated plan for interdisciplinary management including: Identify and treat aggravating factors such as pain and infection. The use of specific treatment modalities such as serial casting or removable splints. The use of antispasmodic drugs (ie. Baclofen, Tizanidine) including botulinum toxin where appropriate. Rehabilitation should consider a range of motion and positioning routine. 9.2 Depression: Persons with moderate to severe ABI are at risk of future depression and should be monitored on an ongoing basis for development of depression. ABIKUS, p. 25 Source ABIKUS, p. 26 ABIKUS, p Pain: pain management protocols should be in place, which include: Regular review and adjustment Handling, support and pain relief appropriate to the individual needs Staff and caregivers should be educated about appropriate handling of paretic upper limbs during transfers, hypersensitivity and neurogenic pain. ABIKUS, p Heterotopic Ossification: the interdisciplinary team should be ABIKUS, p. 28 aware of the possibility of heterotopic ossification (HO) and protocols should be in place for early detection and management. Recommendation Implemented Yes No Sometimes Recommendation Implemented Yes No Sometimes X X X X X X Comment Not integrated, no pathway. If an inpatient or outpatient. Not all OTs have experience with brain injuries. Mild ABI not assessed by OT. Traverse Independence transitional living Questionaires/testing are not happening in real life situations. Not realistic. Vocational rehab still not realistic. Basic ADLs are usually managed well. Higher executive functioning skills are more challenging to manage. Oveall this is limited. Waitlists for community assistance. Comment Those returning from Hamilton have recommendations. Locally, we do not have resources, there isn't a coordinated approach, missing pieces. Reassessment issues in the community. Inpatient assessment and treatment available. The gap is in the follow up post discharge. Occurs in inpatients and somewhat in outpatients. This is easy to do while an inpatient. Can manage some of this in outpatients. This may happen in CCC or restorative. Current medical/restorative model has limited therapy services. Outpatient would refer to neurologist. In this community, this is dependent on the primary care provider. Limited coordination between community and primary care teams. There is screening across the continuum but the ongoing follow up isn't there. Dependent of primary care provider. Dependent on provider. Primary care and community support services take responsibilty. Client is usually advocating for this. Treatment exists in silos. What happens after the formal hospital visit? Training for staff and pain management protocol lacking. Pain Clinic access is limited. Family doctors use opiod agreements. Refusals to manage patients requiring methadone in hospital. Inpatient rehab aware. Lack of reassessment in community. Unless someone is in severe pain, this does not happen. 109 P a g e

110 Recommendation 10. COMA, VEGETATIVE STATE AND MINIMAL CONSCIOUS STATE 10.1 For all patients with a diminished level of consciousness, assessment should be undertaken by a team with specialized experience in profound brain injury to establish the level of awareness and interaction. ABIKUS, p Where patients remain in a coma or minimally conscious states, ABIKUS, p. 29 management in a specialized tertiary centre should be considered if the local services are unable to meet their needs for specialized nursing or rehabilitation Every brain-injured patient who remains unconsious or is unable ABIKUS, p. 29 to sit themselves up should have a graded program to increase tolerance to sitting and standing. Recommendation Source Source 11. VOCATIONAL REHABILITATION 11.1 Patients seeking a return to employment, education or training should be assessed by a professional or team trained in vocational needs following brain injury. Assessment should include: Evaluation of their individual vocational and/or educational needs. Identification of difficulties which are likely to limit the prospects of a successful return and appropriate intervention to minimize them. Direct liason with employers (including occupational health services when available), or education providers to discuss needs and the appropriate action in advance of any return. Evaluation of environmental factors, workplace, psychological aspects including social environment and work culture. ABIKUS, p Clinicians involved in brain injury rehabilitation should consider ABIKUS, p. 32 vocational needs and put patients in touch with the relevant SIGN130, p.33 agencies as part of their routine planning, and refer where appropriate, to a specialist vocational rehabilitation program In setting up placement into a long term job, monitoring should be provided for at least six months or longer to respond to any emergent difficulties, with a follow-up thereafter to establish the long-term viability of the placement. ABIKUS, p. 32 Recommendation Implemented Yes No Sometimes X Recommendation Implemented Yes No Sometimes X X X X X Comment research evidence but no programs in place. Profound ABI training does not exist in all CCC. Don't think this is happening in our region. Access to Hamilton's Slow to Recover program limited. Complex Continuing Care does not always continue programming. Comment Some assessment available through educational institutions and employers. Brain Injury Association has some programming available. Difficult for outpatients to determine this in the clinic. No concrete vocational rehab program that is supportive/determines assessment for return to work. No available vocational rehab. Private auto insurance therapists are well versed on this. Inpatient and outpatient therapists not as much. Traverse does a good job on this. Relevant agencies are lacking. Therapists are considering needs. Mild to moderate is challenging Resources are not available for this extended period of time. Usually they get set up and services are closed. 110 P a g e

111 Recommendation 12. LEISURE AND RECREATION 12.1 All patients should be assessed by a rehabilitation professional or team to identify: Level of participation in leisure activities (including indoor and outdoor pursuits) based on the individual's personal preferences. Barriers or compounding problems which inhibit their engagement in such activities Patients with difficulty undertaking leisure activities of their choice should be offered a goal directed community-based program aimed at increasing participation in leisure and social activities, in liaison with local volunteer organizations. Source ABIKUS, p. 32 ABIKUS, p. 32 Recommendation Implemented Yes No Sometimes X X Comment Lack of knowledge. Dependent on location. Inpatient GRH/SJHC/HHSC outpatient and day programs at Traverse and SJHC - rural areas majorly underserved. Referral to rec therapy not happening while they are an inpatient. Leisure is not their priority. Pressures on system are impacting functional goals. Valuable role for system navigator. Dependent on location. Financial and transportation barriers. Day Program at St. Joes more goal directed. Traverse day program is more drop in. Outreach has ability to do goals. Often times this is a low level consideration. Limited services. Mental health isn't considered when exploring leisure components. community companion is lacking. 111 P a g e

112 Recommendation Source 13. FAMILY AND CAREGIVERS 13.1 Rehabilitation programs should be developed in collaboration with family, caregivers or nursing staff to ensure that the program is carried over into daily activities. ABIKUS, p Individuals who have assumed the caregiver role (eg. family ABIKUS, p. 33 members, paid caregivers) should be individually assessed by a member of the treating team (e.g. social worker), at regular intervals thereafter, for (but not limited to) the following: To establish their own needs and to increase the sustainability of the caring role. The care provided (e.g. quality, extent). The need for support, including respite care. The need for training/education. The caregiver's stress and mental health issues. The caregiver's capacity and opportunity to maintain previous roles (note that it should not be assumed that family members will be willing to take on the caregiver role). Recommendation Implemented Yes No Sometimes X X Comment Inconsistent. Sometimes family perceive therapy time as respite. Mental Health component missing. Barriers exist. Lack of education for families about what to expect. Caregiver burden should be considered. Focus tends to be on the client.? ABI Association. Attempt to complete at initial assessment; follow through on reassessment. Services are time limited and this may not result in optimal family dynamics and timing. Limited services. SJHC and Traverse attempt to support caregiver as best as they can and screen for caregiver needs. No formal/standardized tool being used Additional support should be provided for caregiver/family, including: Crisis support. Training and education for the caregiver role. Training in behaviour management techniques when the person with traumatic brain injury has behavioural and personality changes resulting from the traumatic brain injury. Respite care Family and caregivers should be provided with access to ongoing support when the patient with brain injury is living in the community Children and adolescents affected by a family member wtih brain injury may require referral to specialist support services through education, health, or social work. ABIKUS, p. 33 SIGN130, p.24 SIGN130, p.40 SIGN130, p.40 X X X Very limited. SW may be referred on occasion. Basic information is provided. Services are responding in a crisis manner...not preventative at all.? ABI Associaton. Linkages provided at right time? SW may be referred on occasion ABI Caregiver support group exists. Significant gaps. Family services rarely involved in the community.l 112 P a g e

113 Recommendation 14. DISCHARGE PLANNING 14.1 Patients may be transferred back to the community, once appropriate specialized rehabilitation and support needed can be continued in that environment without delay Preparing family/caregivers and patient for community transition should include: Assessment of discharge destination environment and support available, including a pre-discharge home visit for individuals who require one. Provision of any equipment and adaptations that are required. Training of caregivers/family in the use of equipment and in managing the patient to ensure patient safety in the home environment. Educating patients and family /caregivers about relevant formal and informal resources and how to access these resources including voluntary services and self-help groups. ABIKUS, p. 30 ABIKUS, p. 30 SIGN130, p Care plans should be agreed jointly between the patient and family/caregivers and health professionals from the services involved in the transition. A timely process for review of the care plan should be determined (e.g. usually 3-6 months post discharge). ABIKUS, p. 30, SIGN130, p Upon transfer or discharge, there should be a written report which includes: The results of all recent assessments. A summary of progress made and/or reasons for case closure. Recommendations for future intervention. Current needs. Key contacts and referrals made. Responsible services/professionals. Sources for continued information, support and advice. Source ABIKUS, p. 30 SIGN130, p Copies of both the care plan and the discharge report should be provided to the patient/family/caregivers and all professionals relevant to the patient's current stage of rehabilitation, especially the General Practitioner. ABIKUS, p. 30 SIGN130, p.43 Recommendation Implemented Yes No Sometimes X X X X X Comment Delay in discharges. Pressures on system to achieve patient flow prevent this from happening. Lack of integration. Education, mental health, and cognitive behavioural supports are identified needs. Facilitated discharge for comple care and LTC inconsistent. All is usually happening. Education for families is lacking. CCAC is overwhelmed and not specialized. Dependent on therapist. A timely process for review does not exist. Care plan is dependent on the referral. Not a comprehensive/integrated care plan. Lack of coordination between care providers in the community/primary care. No ABI focussed care plan. No coordinated plan coming back from tertiary acute care. Better information from tertiary rehab. Documentation is present and happening, but there is a lack of information flow across the system. Huge lag time for HHSC referrals experienced consistently. Sometimes Clinical Connect is a tool and telephone meetings, shared notes between RHP's and peer to peer. This will take place when transferred back from Hamilton but not necessarily between local hospitals. Difficult to retrieve information once transferred into the community. No standardized process/tool. System is designed for pass off type of model..need more fluid transition/hand off. This speaks to the need for an integrated clinical ehealth record. Dependent on the setting. Information is typically provided to the next service provider but not to the family. Information is not standardized. Patient/family not getting written information. Likely this isn't sent to other partners involved either. No collaboration with partners when passing information on. 113 P a g e

114 Recommendation 15. COMMUNITY REHABILITATION 15.1 Community rehabilitation services for patients with brain injuries should include a wide range of disciplines working within a coordinated interdisciplinary model/framework and direct access to generic services through patient pathways. At a minimum, the service should include: specialist brain injury nurses physiotherapists occupational therapists speech language therapists clinical psychologists specialist social workers dietitians technical instructors generic assistants consultants in rehabilitation medicine access to other consultants for neurology, neurosurgery, neuropsychology, neuropsychiatry, mental health Source SIGN130, p.39 Recommendation Implemented Yes No Sometimes X Incomplete. Short term only. Some of these services are limited for paid insurance clients. Not existant. Parts of this are starting (e.g. NP clinic)..but not necessarily rehab focussed Each patient should have a named worker. SIGN130, p.39 X CICs in Hamilton if referred are named workers. Comment 114 P a g e

115 APPENDIX L Consultation Day Working Group Priorities PRIORITY # of VOTES 5. Designated ABI beds in acute and rehab Integrated community-based rehab team Access to mental health and addictions services Education and specialized training Early Intervention System navigator Development of banding/pathways for common patient profiles Integrated pathway Secure rehab unit Family support Coma stimulation program Utilize infrastructure of stroke system and apply it to ABI P a g e

116 APPENDIX M 116 P a g e

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122 APPENDIX N 122 P a g e

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136 REFERENCES ABI Working Group. Waterloo Wellington Integrated Acquired Brain Injury Service System Overview, January ABIKUS, Evidence Based Recommendations for Rehabilitation of Moderate to Severe Acquired Brain Injury, Bogner, J., J. Corrigan, L. Fugate, W. Mysiw, and D. Clinchot. The role of agitation in the prediction of outcomes following traumatic brain injury. American Journal of Physical Medicine and Rehabilitation, 80, British Society of Rehabilitation Medicine & Royal College of Physicians. Rehabilitation Following Acquired Brain Injury, National Clinical Guidelines, Canadian Partnership Against Cancer, Navigation: A Guide to Implementing Best Practices in Person- Centred Care, September df Corrigan John and James Deutschle. The Presence and Impact of Traumatic Brain Injury Among Clients in Treatment For Co-Occurring Mental Illness and Substance Abuse. Brain Injury, 22,3, Cullen, Nancy, Matthew Meyer, Jo-Anne Aubut, David Lee, Mark Bayley, and Robert Teasell. Module 3: Efficacy and Models of Care Following an Acquired Brain Injury. Evidence-Based Review of Moderate to Severe Acquired Brain Injury, August Effective Interventions Unit. Integrated Care Pathways Guide 1: Definitions and Concepts, %20Integrated%20Care%20Pathways%20Guide%201%20-%20Definitions.pdf ERABI Research Group, Evidence-Based Review of Moderate to Severe Acquired Brain Injury, Hsieh, M., J. Ponsford, D. Wong, M. Schnonberger, M. McKay, and K. Haines. A Cognitive Behaviour Therapy (CBT) Programme for Anxiety Following Moderate-Severe Traumatic Brain Injury (TBI): Two Case Studies. Brain Injury, 22, P a g e

137 Mahar, Charmaine & Kym Fraser. Barriers to Success Community Reintegration Following Acquired Brain Injury. International Journal of Disability Management, 6, 2012: tegration_following_acquired_brain_injury_%28abi%29 Middleton, Sue, J. Barnett, and D. Reeves. What Is An Integrated Care Pathway, Munce, Sarah, Rika Vander Laan, Charissa Levy, Daria Parsons, & Susan Jaglal. Systems Analysis of Community and Health Services for Acquired Brain Injury in Ontario, Canada. Brain Injury, 28,8 (2014): Ontario ABI Dataset Project. Ontario Neurotrauma Foundation, Guidelines for Concussion/Mild Traumatic Brain Injury & Persistent Symptoms, Ontario Neurotrauma Foundation, Acquired Brain Injury by Local Health Integration Network in Ontario: Waterloo Wellington, O Connell, Barbara. Community Rehabilitation for People with Acquired Brain Injury an Irish Model: Innovative Collaborative and Value for Money, October F8/$File/Barbara_OConnell.pdf Parker, Victoria et al.. Patient Navigation: Development of a Protocol for Describing What Navigators Do. Health Services Research, 45, 2, April 2010: SIGN 130: Brain Injury Rehabilitation in Adults, (March 2013). Topolovec-Vranic, Jane, Naomi Ennis, Mackenzie Howatt, Donna Ouchterlony, Alicja Michalak, Cheryl Masanic, Angela Colantonio, Stephen Hwang, Pia Kontos, Vicky Stergiopoulos, and Michael Cusimano. Traumatic Brain Injury Among Men in an Urban Homeless Shelter: Observational Study of the Rates and Mechanisms of Injury. Canadian Medical Association Journal Open, 2,2, P a g e

138 Toronto Acquired Brain Injury Network. A Framework for the future planning of publicly funded acquired brain injury services in Toronto, March %28Mar-2006%29.pdf WWLHIN Rehabilitation Services Review. Transitioning To a System of Rehabilitative Care In Waterloo-Wellington: Final Report of the Rehabilitation Review Committee to the WWLHIN, FINALRehabReview.pdf 138 P a g e