Health Care Transitions for Women With Disabilities

1. Health Care Transitions for Women With Disabilities Margaret A. Turk, M.D. Professor, Physical Medicine & Rehabilitation SUNY Upstate Medical University Syracuse, NY

2. Workshop Plan • Background information • Case study • Group identifies topic areas of interest

3. 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

4. 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

5. 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

6. 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: • View of the adolescent or adult with disability as a perpetual child • “Readiness”of adolescent or family • Adult health care providers feeling inadequately trained • View that caring for adults with disabilities is unprofitable

7. 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

8. 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.

9. Transitions in Medical Care

10. 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.

11. 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.

12. 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

13. 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]

14. Transitions in Medical Care Information dissemination Emergency Information • AAP/ACEP approved • Physician listing • Past history • Problem list • HIPPA aap.org/advocacy/ emergprep.htm

15. Transition Planning ChecklistEarly 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

16. Transition Planning ChecklistMiddle 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

17. Transition Planning ChecklistLate 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

18. 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

19. 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

20. 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