Now is the time to focus on quality of the life being lived.

Transcription

1 Panel Colleen Denman, Family Member (Parent) Laura Hunter, RN, BScN, Nursing Support Services Kim Brighton, RN, BScN, Health Services for Community Living, Clinical Coordinator Wendy Eves RN, BScN, Nursing Support Services Augustus Kops, Nurse Consultant and Director of Services for Complex Needs Service Mary Paone, RN, MSN, Nursing Lead for Transition, BC Children s Hospital Jennifer Baumbusch (Moderator), RN, PhD, Assistant Professor, UBC School of Nursing Background With many advances in health care and treatment, children growing up with chronic health conditions and/or disabilities (CHC/Ds) are living well into their adult years. A generation ago, few children with severe chronic illnesses and disabilities survived to adulthood, but technological and medication advances have increased the lifespan of these youth with over 98% living well into adulthood. Now is the time to focus on quality of the life being lived. Improving health outcomes for young people involves health professionals having an understanding of adolescent development and broadening their medical perspective to incorporate a developmental health focus. Satisfactory progress through these developmental tasks contributes to the adolescent s self-confidence, self-worth and independence. Research in promoting healthy development outlines several protective factors including having caring adults in their lives, engaging in strong youth-adult relationships, learning life skills and preventive strategies and providing opportunities where the youth can develop competencies and participate in decision-making. How can we promote healthy development for all youth? Youth with complex cognitive and special care needs have unique needs in the transition process. Some youth have progressive metabolic, neurological, or chromosomal conditions. Many of these youth have advanced needs in problemsolving, learning, behaviour management, home care assistance and mobility requiring extensive community-based health care support. During the transition to adulthood, young people and their families are overwhelmed with changes required of them. From a person centred approach these will include school, activities, living arrangements, health, peer support and finances to name a few. Throughout this period, parents and families may lack the knowledge and skills to know where to begin, how to access adult services or personnel with specialized training to meet their needs. They may face additional transitional issues such as family fatigue, need for respite and financial support for ongoing care, and end of life issues. The period of Transition years of age is different than transfer of services and care Health Care Transitions and Transfer of Care Transition is defined by the Society for Adolescent Medicine as the purposeful, planned movement of adolescents with chronic medical conditions from child-oriented to adultoriented health care. A consensus statement from the American Academy of Pediatrics (AAP), the American Academy of Family Physicians, and the American College of Physicians American Society of Internal Medicine outlines the goal of transition for all youth with or without special health care needs is to maximize lifelong functioning and potential through the provision of high-quality, developmentally-appropriate health care

2 services that continues uninterrupted as the individual moves from adolescence to adulthood. The work of transition is to ensure that care is uninterrupted, coordinated, developmentally-appropriate and psychologically sound prior to and throughout the successful transfer into the adult system. Youth with chronic conditions and or disabilities can be described as facing many simultaneous transitions: Developmental transitions: From childhood to adolescence to adulthood From school to secondary education to employment From home to independent or community living Health Care Transitions: From pediatrician to adult primary care physician From pediatric to adult subspecialist / clinical teams From parent health care benefits / insurance to personal options From parental care to independent / interdependent or attendant care Differences in care cultures between pediatrics and adult services There is a distinct difference in how care is provided in pediatrics and in the general adult health care systems. Differences in pediatric and adult care include differences in; age range, cultures of care, communication, role of parents, expectations of patients, confidentiality issues, service provision, and acknowledgement of issues of growth and development. The adult system differs from the pediatric system in terms of the type and level of support from health care providers, decision-making and consent processes, and the amount of family involvement. ON TRAC FAMILY TOOLKIT Current Text inside Family/Parent Toolkit Families play an important role in guiding the health care of their youth with a chronic health condition and/or disability as they transition to adulthood and adult care. While each individual and family situation is unique, there are common concerns and questions families have when support youth in transition. This section of the ON TRAC website contains a toolkit for parents and families of materials, activities, and websites to guide you in the journey of preparation, planning, transfer and safe attachment into the adult system. From concerns about choosing adult are providers, to finances and benefits, accessing home care support, networking with other parents, assisting your youth in gaining individual levels of independence, and sexual health concerns, we are learning from other families and want to pass this knowledge on to you. The Toolkit has been created to provide families and parents with: What you need to learn about and plan for in your transition The questions you did not even know you had to ask Topics include;

3 TEAM = who, where and when and relationship building VOICE = self-advocacy, health knowledge and decision-making ACTION = Independent or supported health care CONNECTIONS = support and friendships FUTURE PLANNING = meaningful education and vocation FINANCES & HOUSING = eligibility and access HEALTHY RELATIONSHIPS = including sexual health PERSONAL SAFETY = exercise, diet, activities and lifestyle choices Improving transition takes time, resources and commitment but these are tiny compared to what was invested in the health care of each child and young person throughout childhood. It makes sense to ensure that this is not wasted because of poor or no transition UK Department of Health, 2006 References American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, American Society of Internal Medicine (2002). A consensus statement on health care transitions for young adults with special health care needs. Pediatrics, 110(6), Canadian Pediatric Society (2011). Transition to adult care for youth with special health care needs: Position statement. Pediatric Child Health, 12, Robertson, L.P., McDonagh, J.E., Southwood, T.R. & Shaw, K.L. (2006). Growing up and moving on. A multi-centre UK audit of the transfer of adolescents with juvenile idiopathic arthritis from pediatric to adult centred care. Annals of Rheumatic Diseases, 65(1), Stewart, D., Antle, B., Healy, H., Law, M. & Young, N.L. (2007). Best practice guidelines for transition to adulthood for youth with disabilities in Ontario: An evidence-based approach. Ontario: CanChild Centre for Childhood Disability Research. Rosen, D.S., Blum, R.W., Britto, M, Sawyer, S.M. & Seigel, D.M. (2003). Transition to adult health care for adolescents and young adults with chronic conditions: Position paper for the Society of Adolescent Medicine. Journal of Adolescent Health, 33, Paone, M. & Whitehouse, S. (2011). TRAC II is a comprehensive review of the current state of transitional needs globally and in BC. Presented at the Child Health BC Youth in Transitions Workshop in April Not published. Accessed online at:

4 HEALTH SERVICES FOR COMMUNITY LIVING (HSCL) HSCL ABI PWD CLBC MCFD CYSN Health Services for Community Living Contact your local Community Health Centre Acquired Brain Injury Program Persons with Disability Benefits a program of MSD Ministry of Social Development Community Living British Columbia Ministry of Children and Family Development Children and Youth with Special Needs a program of MCFD FIRST STEPS WRITE IT DOWN TRANSITION PLANNING REFERRAL ELIGIBILITY CLBC Eligibility is a requirement; however HSCL services may be available to First Nations Living on Reserve or in extremely rare situations receipt of private or third party funding, that CLBC currently do not support ASSESSMENT ongoing and annually rely on family and caregivers to report concerns PLANNING Who? What is most important to you Dreams Expectations? Communication Daily Care Requirements all the idiosyncrasies Capabilities Likes and dislikes Current Plans, recommendations, reports Pediatric team makes a referral to Home Health HSCL one year prior to the child s 19 th birthday HSCL reviews with the Pediatric Team, CLBC and MCFD-CYSN Open referral anyone who supports the youth/adult Known to be eligible for CLBC Documented Developmental Disability significant impaired intellectual functioning and impaired adaptive functioning HSCL confirms eligibility through an Assessment Health related care needs Canadian Citizen or Permanent Resident Resides in British Columbia for at least 6 months 19 years of age or older Have a significant health need that requires a health care professional s involvement and monitoring. Identifies actual and potential health care needs for planning, intervention and support Interview, observation and physical exam, review of records, liaise with other health care professionals Health Care Plan (HCP) for significant health need that requires a health care professional s involvement and monitoring. The HCP may include the delegation of professional tasks to paid caregivers.

5 HEALTH SERVICES FOR COMMUNITY LIVING (HSCL) EDUCATION AND TRAINING ADVOCACY AND CONSENT ACUTE HOSPITALIZATIONS END OF LIFE CARE REPORTING OF ABUSE OR NEGLECT DISCHARGE May assist with training re: specific health issues Links with resources in the Community General training of caregivers is the responsibility of the Private Agency or Service Provider Adults are presumed to be capable of making their own health care decisions unless assessed otherwise. Communicate if the client has a committee/representative for minor and major health care decisions. Discuss who would be the Temporary Substitute Decision Maker if the client was not able to make their own decisions as outlined in the Health Care Consent Act (HCCCFAA). Liaise, collaborate, advocate, interpret Participates in Discharge Planning Refers to and collaborates with the Palliative Care Team Reports concerns via Health website, CLBC or Licensing if a Group Home Annual reviews/consent to the Health Care Plan to continue for as long as there is a significant health care need that requires the HSCL professional s monitoring Discharge no need for clinical services, have private funding, have refused services, no contact/consultation for two years Discharge is not permanent a re-referral can be made at any time when the client's needs change and HSCL involvement is required. REFERENCES Developmental Disabilities Nurses Associations Community Living British Columbia Office of Public Guardian College of Registered Nurses of BC Catherine Reis Provincial Clinical Consultant for Adults with Developmental Disabilities