Health Care Transitions for
Women With Disabilities
Margaret A. Turk, M.D.
Professor, Physical Medicine & Rehabilitation
SUNY Upstate Medical University
Syracuse, NY
Workshop Plan
• Background information
• Case study
• Group identifies topic areas of interest
Transitions in Medical Care
• Childhood onset disability transition to
adult care:
– 1984: Surgeon General C. Everett Koop, MD,
focuses on the needs of adolescents with
chronic and disabling conditions
– 1989: convenes conference “Growing up and
Getting Medical Care: Youth with Special
Health Care Needs”
– 2002: AAP Consensus Statement re:
Transitions
Transitions in Medical Care
• Adult onset disability return to primary care
setting:
– Routine adult health care setting
– Release of information re: acute event; detail
of information
– Health care insurance coverage for services;
change to Medicaid/Medicare
– Absence of national acknowledgement
Transitions in Medical Care
• 90% of all children with disabilities will live
beyond 20 years of age
• 30% or more of adolescents have at least one
chronic illness or disability 1/3 of these
conditions are moderate or severe
• Adolescents with chronic conditions experience
more social isolation, suicide, and depression
than their peers without chronic illness
• Focus needs to move beyond the chronic
condition to include sexuality, substance use,
smoking, or other lifestyle issues
Transitions in Medical Care
•
•
•
Transition is a process
Barriers are often encountered in processes
Several barriers may be present in the move
from Pediatric to Adult care for young people
with disabilities including:
1) View of the adolescent or adult with disability as a
perpetual child
2) “Readiness”of adolescent or family
3) Adult health care providers feeling inadequately
trained
4) View that caring for adults with disabilities is
unprofitable
Transitions in Medical Care
• The American Academy of Pediatrics (AAP)
states that all children, including those with
special health care needs should have a
“medical home”
• “Medical home” means a source of health care
which is accessible, family centered, continuous,
coordinated, and compassionate
• Children and adolescents with disabilities
receive services from a network which often
includes medical, social, and educational
systems
Transitions in Medical Care
• Women with adult onset disabilities may receive
case management services through insurance
plans or a Medicaid “waiver” program.
• Medical home terminology is transferable.
• Network includes medical, social, vocational,
and other community components.
Transitions in Medical Care
Transitions in Medical Care
• Transition requires planning and
preparation.
• Where possible, the patient should engage
in the process.
• A successful process requires a lead
clinician willing to provide information or
organize information.
Transitions in Medical Care
• Providing coordinated, comprehensive
care across systems is challenging.
• The challenge is met through collaboration
between the patient, family members,
educational/vocational, social, and health
care professionals.
• Providers of formal support must
collaborate with providers of informal
support.
Transitions in Medical Care
Federal legislation influencing health care
transition
• Rehabilitation Act of 1973 [Public Law (PL) 93-112] and
1990 Americans with Disabilities Act (ADA) [PL 101-336]
• Security Administration’s Supplemental Security Income
(SSI) Program [Social Security Act, Title V] and Personal
Responsibility and Work Opportunity Act of 1996 [PL 104193
• The Ticket to Work and Work Incentives Improvement Act
of 1999
Transitions in Medical Care
Federal legislation influencing health care
transition
•
•
Children’s Health Insurance Program (CHIP) [Title XXI
of the Social Security Act]
Individuals with Disabilities Education (IDEA) [PL 101476]
Transitions in Medical Care
Information dissemination
Emergency Information
AAP/ACEP approved
Physician listing
Past history
Problem list
HIPPA
aap.org/advocacy/
emergprep.htm
Transition Planning Checklist
Early stage - 10-12 years / Grade 5-7
• Self advocacy: Educate in describing health condition;
family review; encourage asking questions
• Independent health care behaviors: Discuss meds,
treatments and potential barriers to compliance; discuss
how to seek help, use of tools
• Sexual health: Discuss puberty changes, difference with
disability; how to get information
• Social support: Opportunity for parents to discuss
concerns about the future; discuss peer involvement,
supportive relationships with youth
• Education/vocation planning: Discuss home
responsibilities, restrictions in activities due to disability
• Health/lifestyle: Question risky behaviors, impact on
health
Transition Services, British Columbia
Children’s Hospital: www.youthhealth.ca
Transition Planning Checklist
Middle stage - 13-15 years / Grade 8-10
• Self advocacy: Discuss strategies to access info
• Independent health care behaviors: Youth makes
appointment, arranges transport; practice filling Rx;
discuss seeking emergency care
• Sexual health: Request youth question impact on
condition; encourage youth + parents discussing
concerns
• Social support: Request positive goals for self, health
• Education/vocation planning: Discuss plans for HS,
career; support discussions with school counselor re:
career prep, volunteerism
• Health/lifestyle: Discuss driving and limits, body image
and exercise/diet
Transition Services, British Columbia
Children’s Hospital: www.youthhealth.ca
Transition Planning Checklist
Late stage - 16-18 years / Grade 11-12
• Self advocacy: Discuss and assist in choosing adult
care practitioner
• Independent health care behaviors: Maintains
personal health record; meets with potential PCP
• Sexual health: Discuss details of sexuality and function
• Social support: Identify personal assistance needs,
plan for life away from family
• Education/vocation planning: Discuss higher
education and employment options, health care benefits,
living arrangements, health ipact
• Health/lifestyle: Offer opportunity to discuss depression,
identify plan to get help
Transition Services, British Columbia
Children’s Hospital: www.youthhealth.ca
CASE STUDY
• 17 year old young women with dystonic
cerebral palsy, generally in good health,
has had periodic medical issues. Plan is
for transfer of care to internist.
– Past medical history: synopsis, review of
systems, secondary and aging conditions,
index of suspicion
– Functional level: motor, sensory, cognition,
adaptations/equipment
– Prevention activities: women’s health,
exercise
CASE STUDY
Discussion Topics
• Preparation for transition
• Receiving a patient in transition
• Expectations of health care needs and
functional outcome
– Secondary conditions
– Aging with a disability
SUMMARY
• Identify clinician to bridge child  adult care
• Require consumer participation - understand
personal control and individual values
• Raise the index of suspicion for recognition,
diagnosis, and treatment: anticipatory care
• Recognize individual strengths; support
residence/employment options within skill sets