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“Adults, and now? Access to services and healthcare for youth and adults with Spina Bifida and Hydrocephalus”
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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.
Growing Up Ready for Life.
Preparation for adulthood should start early, be real and positive with
shared expectations and provide hope for the future.
Kieckhefer, 2002 Reiss & Gibson, 2002
The ultimate goal of care is to assist children to participate fully in the lives of their families and of their community.
King G. et al
Growing up Ready framework provides a coordinated pathway developed through evidence based practice.
Gall, Kingsnorth and Healy, 2006
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
Shared Management Roles
Major responsibility & knowledge source
Provides care Receives care
Supports parents & youth
Manages Participates
Consults Supervises Manages
Acts as Resource
Consults Supervises
PROVIDER PARENT/FAMILY YOUTH
(Kieckhefer, 2002)
TIM
E
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
The Growing Up Ready Framework
The Growing Up Ready framework provides a coordinated pathway developed through evidence based practice.
Gall, Kingsnorth & Healy, 2006
Timetable for Growing Up
• Starts early
• Outlines a progression of skills targeted at age appropriate times
• Voice of text shifts
• Poster & Pamphlet versions
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!
Transitions
Transition from childhood to adult life became increasingly recognizes as a major hurdle that few were well prepared for.
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 Services
Transfer Services
Growing Up Ready
Adult Services
L I F E S P A N
Maxwell, J., Zee, J. & Healy, H.
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)
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
Transition essentials
Youth are ready for transition when:
• Professional Checklist completed
• Personal/portable health record
• Family doctor in place • Consent & guardianship • Transfer of care
Formal Evaluation “…transition models… need to be trialed and
evaluated in order to best inform how resources need to be distributed.” (Steinbeck, Brodie,Towns, 2007)
ONF proposal – Evaluation of the LIFEspan model of linked care Primary outcome: Continuity of care (remain
linked to the healthcare system) Secondary outcomes: improved health,
wellness, participation, quality of life
Lessons learned
• Network, network, network
• Make connections in adult sector even if not perfect match (“start somewhere”)
• Make connections with primary care, acute care, rehab, and community providers
• Engaging and working with consumers • Find local champions and experts
• Research & evaluation