Preparation for adulthood should start early, be real and positive with shared expectations and provide hope for the future. Kieckhefer, 2002 Reiss & Gibson, 2002
Transitions Transition from childhood to adult life became increasingly recognizes as a major hurdle that few were well prepared for.
The Task 2004 -2009 To develop an evidence-based auditable framework that ensures all youth and their families have access to comprehensive supports that start early to help youth Grow Up Ready for life. Holland Bloorview Kids Rehab Hospital Toronto 2004 2009.
Shared management is a philosophical approach to transition planning from childhood, an alliance between children, families and service providers is essential to allow young people with disabilities to develop into independent healthy,functioning adults. CM. Trahms 2004 Kieckhefer and Trahms 2000
Developmental Age Receives Care Participates in Care Manages Care Supervises Care CEO of Care The Philosophy of Shared Management (Kieckefer & Trahms, 2000) Level of Independence Gall, 2008
The role of the players in the alliance change as the young person grows up, leadership is gradually shifted (in a planned systematic and developmentally appropriate way) from the service provider and parents to the young person. Gall, Kingsnorth & Healy, 2006
Shared management requires a shift in thinking to consistently facilitate preparedness for adult life
Start to help prepare children and youth for adult life by: Thinking about the future, Fostering independence and problem solving, Look for chances to practice and master skills, Planning for change and celebrating milestones. Reiss & Gibson, 2002
Acquiring life skills is not intuitive for a young person with a disability and their family. Skill attainment has to be taught and experienced. Kieckhefer 2000; Stewart et al 2006
Life Skills are the problem solving & life management skills that an individual uses to function successfully. Experiential learning provide real life opportunities Encourage calculated risk taking Promote problem solving skills Opportunity to make mistakes in a supportive environment and learn from them Kingsnorth, Healy, Macarthur (2007)
ANY ENCOUNTER CAN BECOME A SKILL BUILDING OPPORTUNITY!
“When you have a child with a disability, you call it “transition to adulthood”. With a child without a disability, it’s just growing up.” …Judy Guse Salah, Parent Judy’s daughter, Layla, now is now an adult.
The LIFEspan (Living Independently and Fully Engaged) Service Model Transfer Services Growing Up Ready Adult Services L I F E S P A N Maxwell, J., Zee, J. & Healy, H.
The LIFEspan model The LIFEspan model recognizes the value of: Partnerships with the client, family, and other health care and community providers – increasing the capacity of the client, caregivers & the community Age-appropriate services that focus on Preparation for, Access to, Coordination of, and Continuity of service across the lifespan Developing and sharing expertise in the management of the chronic health care needs of persons with disabilities of childhood onset
Transfer Process Essentials A plan that is managed & has a definite structure A family centered approach in collaboration with professionals A documented clinical pathway Continuum of services support for youth and families Somewhere to go! (adult providers)
Development of Adult Medical follow up-A Shift in Practice The current adult rehab model is much more one of episodic management of acute issues than it is a model to manage chronic disease or disability The Lifespan model is a significant shift in philosophy, embracing a chronic care model
A shift in practice.. The Chronic Care Model (Wagner, 1998) focuses on: Improved patient/client self management which aims to make the patients and their caregivers more knowledgeable about their conditions, Planned visits are needed to address prevention and health maintenance Strong links and partnerships with the community Care coordination between facilities, and at a client level Development of expertise The importance of improving the primary care for chronic conditions
Adult services - Critical elements Access Expertise Age-appropriate care Coordination/System navigation Linkages with primary care providers Linkages with acute care partners Focus on health behaviors, health promotion, prevention of secondary conditions, and early detection & intervention Community linkages Capacity building (system, clients, providers, families, caregivers, support services)
Adult service development Lewis-Gary (2001) - disparate practice styles amongst pediatric and adult providers Steinbeck, Brodie &Towns (2007) - a need for the development of transition models, ideally by collaboration between pediatric and adult services Murphy (1999) - found that adults with CP presented with…early joint degeneration, mobility decline, neurogenic bladder, and needs for seating and assistive technology assessment and prescription Jahnsen et al (2005) – for adults with CP …need for lifelong follow-up with focus on empowerment Strauss, Cable, and Shavelle (1999) found that individuals with CP were three times more likely to die from breast cancer
Preliminary Findings Recommendations have included: Referrals to specialists for osteoporosis, cardiac irregularities, urological issues Assessments for seating and/or orthoses, community mobility, pre-driving, assistive technology Chronic pain management (group or individual support), Spasticity management Psychosocial support needs Physiotherapy treatment
Your life as an adult Think about it, envision it and plan for the future today Holland Bloorview Rehabilitation Hospital
Health First If you are not healthy...no fun stuff Family Doctor Medical passport Self knowledge and understanding Balanced energy planning
What do you Want to do After High School Get to know who you are and what you want to do Learn how you learn best Know what strategies you need to learn and be able to tell others Think of slower pace of education Volunteer, volunteer and volunteer