The Future

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The Future
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Growing Up Ready For Life

• Barcelona 2011

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Growing Up Ready for Life.

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Preparation for adulthood should start early,
be real and positive with shared expectations and
provide hope for the future. Kieckhefer,
2002 Reiss Gibson, 2002
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Transitions

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

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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.

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• 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

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The Philosophy of Shared Management (Kieckefer
Trahms, 2000)
       
 
Level of Independence
Gall, 2008
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• 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

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

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• 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

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• 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

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• 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)

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• ANY ENCOUNTER CAN BECOME A SKILL BUILDING
  OPPORTUNITY!

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• When you have a child with a disability, you
  call it transition to adulthood. With a child
  without a disability, its just growing up.
• Judy Guse Salah, Parent
• Judys daughter, Layla, now is now an adult.

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The LIFEspan (Living Independently and Fully
Engaged) Service Model
L I F E S P A N
Transfer Services
Growing Up Ready
Adult Services
Maxwell, J., Zee, J. Healy, H.
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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

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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)

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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

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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

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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)

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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 withearly 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

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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

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Your life as an adult

• Think about it, envision it and plan for the
  future today
• Holland Bloorview Rehabilitation Hospital

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Health First

• If you are not healthy ...no fun stuff
• Family Doctor
• Medical passport
• Self knowledge and understanding
• Balanced energy planning

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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

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Take Charge of your Life

• New experiences.....
• Take on responsibilities
• Direct your own care
• Go out without parents with a peer

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Money ,Money, Money

• Find out what you are eligible for...
• Get your own bank card
• Go to the bank or try online or direct another
  to do it but listen
• Look into student loans

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Socialization and participation

• Keeps you healthy.....
• Make friends
• Fitness
• Say yes to every invitation and give
  invitations
• Volunteer again
• W.H.O. International classification of function

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The future

• International Youth in Action

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Resources

• WWW.Sickkids.ca Good to Go
• WWW. Hollandbloorview.ca Youth Corner
• Helenhealy_at_live.ca Training and Consultation on
  Growing up Ready and program development.

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