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Medical Homes for People with Intellectual and Other Developmental Disabilities Workshop

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Preparing the Patient and Family: When & How to Prepare for Transfer ? 2. Working Definition of ... Many families & youth do not know name of their health ... – PowerPoint PPT presentation

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Title: Medical Homes for People with Intellectual and Other Developmental Disabilities Workshop


1
Preparing the Patient and Family When How to
Prepare for Transfer ?
  • Medical Homes for People with Intellectual and
    Other Developmental Disabilities Workshop
  • Pittsburgh, PA
  • October 18, 2007
  • John Reiss, PhD, Associate Professor of
    Pediatrics
  • University of Florida jgr_at_ichp.ufl.eduhttp//hc
    transitions.ichp.ufl.edu

2
Working Definition of Health Care Transition
  • A purposeful planned process that supports
    adolescents and young adult with chronic health
    conditions and disabilities to move from
    child-centered (pediatric) to adult-oriented
    health-care practices, providers, programs, and
    facilities.
  • Reiss Gibson, 2004

3
Health Care Transfer
  • Leaving one health care provider and moving to
    another, for example the move from a primary care
    pediatrician to a family physician or from a
    childrens hospital to a hospital that cares for
    adults.
  • Reiss Gibson, 2004

4
Health Care Transition (HCT) The Vision
  • All youth with special needs receive services and
    supports needed to successfully transfer to adult
    health care and adult roles and responsibilities.
  • Services supports constitute a dynamic lifelong
    planned process.
  • HCT process maximizes lifelong functioning
    potential through provision of developmentally
    appropriate uninterrupted health care services.
  • HCT process involves a reorientation of clinical
    relationships to mirror the young persons
    increasing maturity and emerging adulthood.

5
HCT The Special Case of Youth with Intellectual
and Other Cognitive Disabilities
  • Youth with special needs and their families
    significant others (SOs) receive services and
    supports needed to successfully transfer to
    adult-oriented health care and carry out their
    changing roles and responsibilities.
  • HCT process involves a reorientation of clinical
    relationships to mirror the young persons
    cognitive level and maturity and the ongoing
    role responsibilities of their family and SOs.

6
What we have learned about HCT
  • Its easier said than done
  • HCTs critical but only a part of becoming adult
  • HCT involves planning skill development over a
    long period of time by youth providers
  • Differences between pediatric and adult medical
    systems make a difference (two distinct cultures)
  • Interpersonal relationships are critical

7
When to actively address transfer?
  • At the time of diagnosis or initial visit.
  • At every well-child visit, as part growth
    development and anticipatory guidance.
  • At first signs of puberty.
  • At 16, when transition is included in school IEP.
  • At 17, to initiate guardianship and family role
    in medical decision making.
  • Two years before change in insurance coverage.
  • Two years before anticipated transfer.

8
Health Insurance
  • Many families youth do not know name of their
    health insurance program
  • Many do not know when youth will age-out of
    current coverage (end because of age).
  • Many families believe insurance coverage will
    continue indefinitely
  • Many age 21 do not have insurance

9
Providers Upper Age Limit
  • Many do not know providers upper age limit.
  • Some families/youth believe pediatric provider
    will care for child/them indefinitely

10
How to Prepare Patient and Family
  • Talk about A/YA eventually seeing doctors who
    treat adults.
  • Talk about health care needs A/YA will have when
    an adult
  • Encourage A/YA to take a developmentally
    appropriate role in own care.
  • Give information and educational materials about
    health care transition.
  • Meet alone with A/YA for some of medical visit.

11
How to Prepare Patient and Family
  • Discuss future education, vocational training
    and/or employment options.
  • Recommend training in independent living and/or
    medical self care.
  • Help coordinate transfer to adult providers.
  • Discuss possible changes in eligibility for
    health insurance coverage.
  • Assist in creating a written health care
    transition plan.

12
Key Issues to Address in Health Care Transition
Plan
  • What does it take to manage the SHCN and help AYA
    be as healthy as possible?
  • What are the special skills and/or knowledge
    necessary for independence and health?
  • What is my child (am I) responsible for now?
  • What does my child (do I ) need to learn?
  • What tasks will need to be addressed but given to
    others to carry out?

13
Health Care Transition Workbooks
  • Thinking About Your Future
  • Basic Knowledge
  • Health Care Practices
  • Meds, Tests, Equip Supplies
  • Doctor Visits
  • HCT Tasks and Activities
  • Transition to Adulthood
  • Health Systems

14
Implement Transition Planning and Facilitate
Skills Development
15
Support a Comprehensive HCT Process for AYA
with Intellectual Other Cognitive Disabilities

Active Transfer
Empathic Intake
Therapeutic Discharge
Peds
Adult care
Preparation for Transfer
Warm Hand-off
Establish YA Family in Adult System
Incorporates lifespan developmental
perspectives and addresses knowledge, skills and
affective components of the move from
child-centered (pediatric) to adult-oriented
health care.
16
Therapeutic Discharge
  • Affirm family YA accomplishments
    competencies
  • Reframe discharge to commencement
  • Address feelings of grief and loss (by youth,
    families providers)
  • Help plan for loss of formal and informal social
    supports for youth and their families
  • Help parents prepare for changing roles.

17
Warm Hand-off
  • Transitional health care visits (see both peds
    and adult providers at same time)
  • Orientation materials for new adult patients and
    their families
  • (tips, intro of staff with pictures)
  • Orientation visit before first medical visit

18
Empathic Intake
  • Help adult providers acknowledge and accommodate
    to the pediatric experience of new YA patients.
  • Family/patient as expert partner in own care.
  • Help YA families recognize and address issues
    in establishing new medical relationships.

19
Empathic Intake
  • Proactively identify differences between
    pediatric and adult care in terms of culture,
    procedures, policies, practices, expectations

20
Issues in Establishing New Health Care
Relationships
  • Families forget what it took to develop effective
    relationship with pediatric providers
  • Young adults and families are unprepared for
    process, content, style culture of adult care
  • Family, YA providers have undisclosed
    expectations that color their experience of the
    health care relationship

21
Health Care Transition Resources
22
Transition Training Website
http//hctransitions.ichp.ufl.edu/ddcouncil/
23
Transition Videos
  • Jims Story
  • College and Beyond

http//video.ichp.ufl.edu
24
http//hctransitions.ichp.ufl.edu
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