Toronto Acquired Brain Injury Network. Response to the Catastrophic Impairment Report I Consultation

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1 Toronto Acquired Brain Injury Network Response to the Catastrophic Impairment Report I Consultation May 13, 2011

2 to Recommendations for Changes to the Definition of Catastrophic Impairment: Final Report of the Catastrophic Impairment Expert Panel to the Superintendent, April 8, Respondent The Toronto Acquired Brain Injury (ABI) Network is a collective of publicly funded ABI service providers in the Greater Toronto Area. In addition the University of Toronto, Ontario Neurotrauma Foundation and local brain injury associations are ex-officio members of the Network (see Appendix for list of members). In 1995 the Ministry of Health and Long Term Care began funding the Network to provide regional coordination and access for individuals with ABI. The primary role of the Network is to manage a centralized wait list for individuals accessing the specialized ABI inpatient rehab beds across 3 rehabilitation hospitals in Toronto and to serve as a single point of referral to the publicly funded community based organizations that support individuals with brain injury. Given this role, the Network has a unique system view of the flow of patients with ABI from acute care to inpatient rehab and the access issues that occur at different points in an individual s recovery. In addition, the Network provides a forum for service providers and other stakeholders to collectively consider and respond to issues that impact system coordination and access. As such, the Network is interested in any changes that occur to motor vehicle insurance legislation and the Statutory Accident Benefits Schedule as they apply to traumatic brain injury. The Toronto ABI Network s Review and Response The definition of catastrophic impairment is clearly the critical factor in determining access to medical rehabilitation benefits however; the current CAT definition in relation to brain impairment has been under scrutiny for some time given its heavy reliance on the Glasgow Coma Scale 1. Therefore, we were pleased to see a considered review of the definition by the Expert Panel with the goal of improving fairness and accuracy and fully support the development of a process that would allow access to an interim CAT classification. We have reviewed the report dated April 8, 2011 and wish to offer the following comments in response. Given the role of the Network, our primary concern with the proposed changes to the CAT definition centres around the requirement for a person to be accepted to an inpatient rehab 1 Ontario Neurotrauma Foundation Classification of Brain Impairment: What the Evidence Tells Us. 2 P a g e

3 program. We expect that this was meant to act as a proxy measure for injury severity (i.e., if the patient s impairments are severe enough to require inpatient rehab then they can be expected to have a significant injury that may have catastrophic outcomes). However, a key point that needs to be considered is that access to a publicly funded resource such as inpatient neurological rehabilitation can be impacted by a number of factors, not only the patients level of impairment or their need for rehabilitation. In order to fully understand the potential issues related to the requirement for an admission to an inpatient rehabilitation program, the Network reviewed existing data regarding the occurrence of brain injury and investigated the current level of resources in the province to address the resulting demand for rehabilitation. The following information summarizes this review. Occurrence of Brain Injury In 2006, the Ontario Neurotrauma Foundation supported the development of an Acquired Brain Injury Dataset that draws ABI-specific data from existing Canadian Institute of Health Information (CIHI) data sources. This dataset describes incidence, occurrence, and encounters with the health care system. Dr. Angela Colantonio, Ph.D., OT Reg. (Ont), principal investigator, is the Saunderson Family Chair in Acquired Brain Injury Research, Toronto Rehabilitation Institute; Professor, Department of Occupational Science and Occupational Therapy, University of Toronto. The first phase of the project, to build this dataset, was completed in February 2009 and provides access to data from Relevant data from this dataset is provided below to illustrate the current occurrence of TBI. When counted across data sets, a total of 76,993 episodes of care for TBI were reported in Ontario from fiscal year (FY) 2003 to 2007 (57,592 cases in Emergency Departments (ED) and 19,401 cases in acute care across the 4 year period of the study) 2. Of note, motor vehicle traffic incidents accounted for 13% (10,215) across all episodes of care reported within CIHI data sources from FY Specifically, 11% (6,335) of ED visits for TBI 3 and 20% (3,880) of acute care TBI admissions. 2 Ontario Neurotrauma Foundation ABI Dataset Pilot Project Phase 1 Highlights: Number of Episodes of Care and Causes of Brain Injury p.2 %20demographics.pdf 3 P a g e

4 To fully understand the impact of occurrence rates on access and capacity for ABI inpatient beds it is important to not only look at TBI rates but also non-tbi rates of brain injury. the same dataset as cited above illustrates that a total of 146,817 episodes of care of TBI and non-tbi were reported from fiscal year (FY) 2003 to 2007 (69,914 were non-tbi). This reflects a more accurate picture of the demand on the limited number of specialized ABI rehab beds across the province. NOTE: Data from CIHI reflects only ED and acute care admissions and does not reflect visits to family physicians or other community based health service providers that may result from a motor vehicle collision. Provincial Inpatient ABI Rehab Beds To understand this data in the context of current rehab capacity across the province, the Toronto ABI Network contacted provincial partners to obtain information about the number of designated ABI inpatient rehab beds and the average wait time to access these beds. This information, together with data the Toronto ABI Network regularly collects about patient referrals and wait times provides a general picture of the designated ABI inpatient rehab resources across the province. The ABI programs within these hospitals serve a catchment area that expands beyond their local regions. In addition, Hamilton Health Sciences has a small number of provincial beds that are funded to serve clients across the province that do not have access to inpatient rehabilitation within their local regions. The following is an account of the designated inpatient ABI rehab beds across the province: 3 Ontario Neurotrauma Foundation ABI Dataset Pilot Project Phase 1 Highlights: Number of Episodes of Care and Causes of Brain Injury p.4 %20demographics.pdf 4 P a g e

5 Given the occurrence rates reported above and the limited capacity of ABI rehab beds in the province it is not surprising that the average wait times for ABI rehab are significantly higher than most other rehab populations. As an example, the average wait times (as measured by date of referral to date of admission) in the regions with the largest number of ABI rehab beds (i.e., Hamilton and Toronto) currently range from 23.5 to 77 days. It is important to take into account the overall occurrence rates of TBI and non-tbi reported above when considering the impact on ABI Inpatient rehab capacity as both groups have equal access to these beds. This lack of resources was also reported by the Ministry of Health and Long Term Care s Trauma Expert Panel, chaired by Dr. Murray Girotti in 2006, who at the time, was the Medical Director, Trauma Program, London Health Sciences Centre and Co-chair Provincial Trauma Network. The Panel noted that Ontario has a lack of hospital based and ambulatory and community rehabilitation services 4. The panel also noted that delays are created for patients due to lack of rehabilitation resources and a lack of knowledge about the value of appropriate rehabilitation. 5 These delays are reported to have resulted in an average wait time of days from date of onset to date of admission to inpatient rehabilitation for TBI patients 6. ABI Rehab Access Issues The Toronto ABI Network s role in managing a centralized referral system has provided the opportunity to collect and report wait time data since Although this is regional information, we have included a summary of the wait time for the Toronto area ABI beds to illustrate the ongoing challenge in getting timely access to inpatient rehabilitation following brain injury. From our many years of managing a centralized referral system for inpatient ABI rehab beds for the GTA, we know that the wait time to access inpatient ABI rehabilitation impacts the way acute care triages their patients and is a key factor in determining if the patient should be referred for inpatient rehabilitation or should be discharged home. 4 Ministry of Health and Long Term Care Report of the Trauma Expert Panel (2006)p.iii 5 Ministry of Health and Long Term Care Report of the Trauma Expert Panel (2006) p.7 6 Ministry of Health and Long Term Care Report of the Trauma Expert Panel (2006) p P a g e

6 Source: Toronto ABI Network Data Reports Over the past few years we have seen a growing trend of acute care providers discharging people directly home in order to avoid having the patient remain in an acute care bed while they wait for inpatient rehab. In fact, given the significant pressure on acute care to discharge patients, acute care providers report that they look for any and all creative service options that will allow them to avoid having the patient wait in an acute care bed for inpatient rehab. They also report feeling more comfortable discharging TBI patients to the community if the patient has access to insurance funding because they are more confident that they will get access to rehab through the private sector not because they do not have the same rehab needs as those without access to 3 rd party funding. In addition, when patients are discharged home to wait for inpatient rehab (rather than wait in an acute care bed) we have found that almost all of these patients decline an inpatient rehab bed when it is offered often due to a lack of insight into the significance of their impairments and incorrect belief that because they were discharged home that they do not require inpatient rehabilitation. All too often, we see these same patients attempt to re-enter the healthcare system at a time when services are much more difficult to access and their impairments are entrenched. Despite the need for inpatient rehabilitation for many individuals following a brain injury, there are many who are not accepted into these programs not because they are too high functioning as the proposed CAT definition would suggest, but because some aspect of their impairment or care needs makes them ineligible according to the admission criteria of the inpatient rehab programs. There are many reasons that individuals may be declined access to a rehab program and sometimes those reasons have nothing to do with the patients functional status, need for rehab, or anticipated outcomes. 6 P a g e

7 For example, people may not get access to rehab because: There is a lack of resources in many regions There are extensive waits for ABI inpatient rehab Referrals to rehab are declined because: - The patient needs restraints or a sitter/observer to promote safety following brain injury, yet presence of restraints or need for an observer are part of the rehab programs exclusion criteria - Patient is wandering or exhibiting other behaviours that are explicitly part of the rehab programs exclusion criteria - The referring treatment team has been unable to articulate rehab goals for the patient that can be addressed within the anticipated rehab length of stay. - Patient is not sufficiently oriented to participate in a rehab program - Patient is not demonstrating capacity to retain information and therefore does not sufficiently demonstrate the ability to benefit from rehab - Patient requires Nasogastric tubes or has other medical needs that can not be accommodated by the rehab hospital or may have infection control needs that can not be managed by the hospital Clearly these people have a significant and likely catastrophic brain injury but they are often unable to access rehab because their needs are too complex or simply because they don t fit the admission criteria of the available rehab programs. This is a significant oversight in the proposed definition and would mean that some patients who are among the most severely injured and impaired may ironically be the ones NOT deemed to have a catastrophic injury. 7 P a g e

8 Summary and Recommendations: We understand the need to have clear criteria for determining catastrophic impairment and fully support the development of a process that would allow access to an interim CAT classification but feel that there are flaws in the proposed approach, as articulated above. We have significant concerns that if changes to the CAT definition are made in haste, without sufficient reflection and evaluation, we may end up with an equally flawed definition and may find it necessary to revisit this issue, yet again, in the near future. Instead, we recommend that the Financial Services Commission of Ontario incorporate the work that has been conducted to review current science and evidence regarding the measurement and definition of brain impairment. The Ontario Neurotrauma Foundation and the Insurance Bureau of Canada recently engaged an existing group of researchers and clinicians (ERABI - Evidence-based Reviews of ABI) who have conducted several ONF-funded systematic reviews and consensus conferences. ONF engaged the team to conduct a specific scientific literature search and convene an expert consensus panel to discuss the evidence and address the classification of brain impairment. 7 This work resulted in a report that outlines the evaluation and decision-making on which appropriate and feasible measures are recommended to classify brain impairment, using thresholds for consideration across different time points 8. The clinical and academic experts involved in this review agreed that the following assessments have evidence to support their use in classifying catastrophic brain injury: 1. Glasgow Coma Scale (GCS) 2. Age 3. Computed Tomography (CT) Scan in those with GCS < than 9 4. Somatosensory Evoked Potentials (SEPs) 5. Duration of Post Traumatic Amnesia (possibly measured by the Galveston Orientation and Amnesia Test (GOAT)) 6. Disability Rating Scale (DRS) The results of this work were based on current evidence at the time of the review and it was acknowledged that there is further work to be done to validate other promising assessment and to evaluate both the applicability of some of these tools from a medical-legal perspective and the application of the framework. 7 Ontario Neurotrauma Foundation Classification of Brain Impairment: What the Evidence Tells Us. 8 Ontario Neurotrauma Foundation Classification of Brain Impairment: What the Evidence Tells Us. 8 P a g e

9 Given that this work is already underway and given the significant implications that changing the CAT definitions would have on the entire sector it is recommended that FSCO proceed cautiously and not make any changes until this work is complete and the findings can inform a more evidenced-based course of action. Regardless of what measures or assessments are, in the end, deemed appropriate for the medical-legal classification of catastrophic brain injury it is our strong recommendation that FSCO not rely on an admission to an inpatient rehab program as a proxy for injury severity. For the reasons stated above, there are too many factors that influence access to rehab which have little or nothing to do with the patient s functional status. Consideration should be given instead to: 1. Admission to an acute care facility post injury to be considered as a requirement for a CAT designation as a substitute for the requirement of an inpatient rehab admission. 2. Classification of catastrophic brain injury to be based on the results of a functional assessment such as those recommended by the ONF/IBC review cited above or the Glasgow Outcome Scale- Extended (GOS-E). Note: further study is required to establish the validity of the GOS-E. 9 P a g e

10 Toronto ABI Network Membership Membership of the Toronto Acquired Brain Injury Network is comprised of all publicly-funded agencies or organizations providing ABI service and/or support in Toronto and the surrounding area. Acute Care St. Michael's Sunnybrook Health Sciences Centre Trillium Health Centre University Health Network York Central Hospital Inpatient & Day Hospital Rehabilitation Baycrest Bridgepoint Health Holland Bloorview Kids Rehabilitation Hospital St. John's Rehab Hospital Toronto Rehabilitation Institute West Park Healthcare Centre Community Service and Support Central Community Care Access Centre Community Head Injury Resource Services COTA Health Peel Halton Acquired Brain Injury Services Toronto Central Community Care Access Centre Academic/Consumer/Other Brain Injury Society of Toronto* Brain Injury Association of Durham Region* Ontario Neurotrauma Foundation* University of Toronto* * Ex-officio member 10 P a g e

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