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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.

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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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Page 1: SB care service model LIFEspan, Canada

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.

Page 2: SB care service model LIFEspan, Canada

Growing Up Ready for Life.

Page 3: SB care service model LIFEspan, Canada

Preparation for adulthood should start early, be real and positive with

shared expectations and provide hope for the future.

Kieckhefer, 2002 Reiss & Gibson, 2002

Page 4: SB care service model LIFEspan, Canada

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

Page 5: SB care service model LIFEspan, Canada

Growing up Ready framework provides a coordinated pathway developed through evidence based practice.

Gall, Kingsnorth and Healy, 2006

Page 6: SB care service model LIFEspan, Canada

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

Page 7: SB care service model LIFEspan, Canada

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

Page 8: SB care service model LIFEspan, Canada

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

Page 9: SB care service model LIFEspan, Canada

Shared management requires a shift in thinking to consistently facilitate preparedness for adult life

Page 10: SB care service model LIFEspan, Canada

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

Page 11: SB care service model LIFEspan, Canada

The Growing Up Ready Framework

The Growing Up Ready framework provides a coordinated pathway developed through evidence based practice.

Gall, Kingsnorth & Healy, 2006

Page 12: SB care service model LIFEspan, Canada

Timetable for Growing Up

•  Starts early

•  Outlines a progression of skills targeted at age appropriate times

•  Voice of text shifts

•  Poster & Pamphlet versions

Page 13: SB care service model LIFEspan, Canada

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)

Page 14: SB care service model LIFEspan, Canada

ANY ENCOUNTER CAN BECOME A SKILL BUILDING OPPORTUNITY!

Page 15: SB care service model LIFEspan, Canada
Page 16: SB care service model LIFEspan, Canada

Transitions

Transition from childhood to adult life became increasingly recognizes as a major hurdle that few were well prepared for.

Page 17: SB care service model LIFEspan, Canada

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

Page 18: SB care service model LIFEspan, Canada

Transfer Services

Transfer Services

Growing Up Ready

Adult Services

L I F E S P A N

Maxwell, J., Zee, J. & Healy, H.

Page 19: SB care service model LIFEspan, Canada

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)

Page 20: SB care service model LIFEspan, Canada

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

Page 21: SB care service model LIFEspan, Canada

Transition essentials

Youth are ready for transition when:

•  Professional Checklist completed

•  Personal/portable health record

•  Family doctor in place •  Consent & guardianship •  Transfer of care

Page 22: SB care service model LIFEspan, Canada

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

Page 23: SB care service model LIFEspan, Canada

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

Page 24: SB care service model LIFEspan, Canada