Health Care Transitions for Women With Disabilities Margaret A. Turk, M.D. Professor, Physical...
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Transcript of Health Care Transitions for Women With Disabilities Margaret A. Turk, M.D. Professor, Physical...
![Page 1: Health Care Transitions for Women With Disabilities Margaret A. Turk, M.D. Professor, Physical Medicine & Rehabilitation SUNY Upstate Medical University.](https://reader035.fdocuments.net/reader035/viewer/2022062716/56649dce5503460f94ac2869/html5/thumbnails/1.jpg)
Health Care Transitions for Women With Disabilities
Margaret A. Turk, M.D.
Professor, Physical Medicine & Rehabilitation
SUNY Upstate Medical University
Syracuse, NY
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Workshop Plan
• Background information
• Case study
• Group identifies topic areas of interest
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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
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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
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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
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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 family3) Adult health care providers feeling inadequately
trained4) View that caring for adults with disabilities is
unprofitable
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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
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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.
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Transitions in Medical Care
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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.
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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.
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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 104-193
• The Ticket to Work and Work Incentives Improvement Act of 1999
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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 101-476]
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Transitions in Medical CareInformation dissemination
Emergency InformationAAP/ACEP approvedPhysician listingPast historyProblem listHIPPA
aap.org/advocacy/aap.org/advocacy/
emergprep.htmemergprep.htm
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Transition Planning ChecklistEarly stage - 10-12 years / Grade 5-7
• Self advocacySelf advocacy: Educate in describing health condition; family review; encourage asking questions
• Independent health care behaviorsIndependent health care behaviors: Discuss meds, treatments and potential barriers to compliance; discuss how to seek help, use of tools
• Sexual healthSexual health: Discuss puberty changes, difference with disability; how to get information
• Social supportSocial support: Opportunity for parents to discuss concerns about the future; discuss peer involvement, supportive relationships with youth
• Education/vocation planningEducation/vocation planning: Discuss home responsibilities, restrictions in activities due to disability
• Health/lifestyleHealth/lifestyle: Question risky behaviors, impact on health
Transition Services, British ColumbiaChildren’s Hospital: www.youthhealth.ca
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Transition Planning ChecklistMiddle stage - 13-15 years / Grade 8-10
• Self advocacySelf advocacy: Discuss strategies to access info • Independent health care behaviorsIndependent health care behaviors: Youth makes
appointment, arranges transport; practice filling Rx; discuss seeking emergency care
• Sexual healthSexual health: Request youth question impact on condition; encourage youth + parents discussing concerns
• Social supportSocial support: Request positive goals for self, health• Education/vocation planningEducation/vocation planning: Discuss plans for HS,
career; support discussions with school counselor re: career prep, volunteerism
• Health/lifestyleHealth/lifestyle: Discuss driving and limits, body image and exercise/diet
Transition Services, British ColumbiaChildren’s Hospital: www.youthhealth.ca
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Transition Planning ChecklistLate stage - 16-18 years / Grade 11-12
• Self advocacySelf advocacy: Discuss and assist in choosing adult care practitioner
• Independent health care behaviorsIndependent health care behaviors: Maintains personal health record; meets with potential PCP
• Sexual healthSexual health: Discuss details of sexuality and function• Social supportSocial support: Identify personal assistance needs,
plan for life away from family• Education/vocation planningEducation/vocation planning: Discuss higher
education and employment options, health care benefits, living arrangements, health ipact
• Health/lifestyleHealth/lifestyle: Offer opportunity to discuss depression, identify plan to get help
Transition Services, British ColumbiaChildren’s Hospital: www.youthhealth.ca
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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
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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
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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