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: 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

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. 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  HIPPAaap.org/advocacy/ emergprep.htm emergprep.htm

15. Transition Planning Checklist Early 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 Columbia Children’s Hospital: www.youthhealth.ca

16. Transition Planning Checklist Middle 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 Columbia Children’s Hospital: www.youthhealth.ca

17. Transition Planning Checklist Late 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 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