You are advocates with skills Your skills are for certain time frames Now is the time to learn the next set of skills
Transitions: Growing Up Ready to Live! The Ultimate Outcome: Transition to Adulthood HRTW National Resource Center Team Patti Hackett, MEd Co-Director Mallory H. Cyr Youth Coordinator Ceci Shapland, RN, MS Consultant-Family Partnerships Maine Integrative Services Grant Anna H. Cyr Augusta, ME October 22, 2008
“ Children and youth with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”
Maintain an up-to-date medical summary that is portable and accessible
Apply preventive screening guidelines
Ensure affordable, continuous health insurance coverage
Pediatrics 2002:110 (suppl) 1304-1306
A Consensus Statement Health Care Transitions for Young Adults With Special Health Care Needs American Academy of Pediatrics , American Academy of Family Physicians, American College of Physicians - American Society of Internal Medicine
Transition is the deliberate, coordinated provision of developmentally appropriate and culturally competent health assessments, counseling, and referrals.
Pediatric Adult Age-related Growth& development, future focussed Maintenance/decline: Optimize the present Focus Family Individual Approach Paternalistic Proactive Collaborative, Reactive Shared decision-making With parent With patient Services Entitlement Qualify/eligibility Non-adherence >Assistance > tolerance Procedural Pain Lower threshold of active input Higher threshold for active input Tolerance of immaturity Higher Lower Coordination with federal systems Greater interface with education Greater interface with employment Care provision Interdisciplinary Multidisciplinary # of patients Fewer Greater
What does the Data tell us? Natl CSHCN 2005-06 HRTW 2004-06 NC Neph 2005 Youth – MN 1997 Youth – NYLN 2003
49.3% NO If YES, have they talked with you about having [CHILD’S NAME] eventually see doctors or other health care providers who treat adults? 53.8% NO 46.2% YES Have [CHILD’S NAME]’s doctors or other health care providers talked with you or [CHILD’S NAME] about his/her health care needs as he/she becomes an adult?
78.7% NO Eligibility for health insurance often changes as children reach adulthood. Has anyone discussed with you how to obtain or keep some type of health insurance coverage as [CHILD’S NAME] becomes an adult? Never 11.9% Sometimes 16.3% Usually 23.0% Always 48.7% How often do [CHILD’S NAME]’s doctors or other health care providers encourage him/her to take responsibility for his/her health care needs, such as: IF 5-11 Years: learning about (his/her) health or helping with treatments and medications? IF 12+ Years: taking medication, understanding (his/her) health, or following medical advice?
Barriers to Transition * rated extremely important or very important (combined) HRTW Questionnaire 2006-2007 Medical Homes N=52 in 26 states NACHRI Hospitals N=19 in 18 states States N=42 of 59 States/ Territories Lack of capacity of adult providers to care for youth/adults with SHCN 83% 85% 95% Lack of understanding of reimbursement eligibility differences between adults and children with special health care needs 65% 63% Not Asked Fragmentation of care among systems providers 87% 73% 89% Lack of knowledge about or linkages to community resources that support youth in transition 85% 58% 50%
Health Care Transition Activities Medical Homes N=52 26 states NACHRI Hospitals N=19 18 states (12%) Shriners Hospitals N=20 15 states & Canada (91%) State Title V Agencies N=42 of 59 States/ Territories (71%) Create an individualized health transition plan 34% 43% 25% 50% Promote health management, self care, and prevention of secondary disab. 63% 79% 95% 72% Discuss legal responsibility for medical decisions and health records <18. 21% Written 81% assent 58% 100% 62% Recruit adult primary /specialty providers to assume care of youth with special needs 56% 58% 35% 53%
Youth With Disabilities Stated Needs for Success in Adulthood
Career development (develop skills for a job and how to find out about jobs they would enjoy)
Independent living skills
Finding quality medical care (paying for it; USA)
Protect themselves from crime (USA)
Obtain financing for school (USA)
SOURCE: Point of Departure, a PACER Center publication Fall, 1996
Transition & ……Insurance NO HEALTH INSURANCE 40% college graduates (first year after grad) 1/2 of HS grads who don’t go to college 40% age 19–29, uninsured during the year 2x rate for adults ages 30-64 Source: Commonwealth, 2003, 2005
Percentage of adults ages 19–29 reporting going without various services because of cost, by health insurance status: 2005 Source: Collins, et al., 2007.
Incapable of self-sustaining employment by reason of mental or physical handicap, as certified by the child's physician on a form provided by the insurer , hospital or medical service corporation or health care center
Adult, childless continued on Family Plan
Increasing age limit to 25-30
CO, CT, DE, FL , ID, IN, IL, ME , MD, MA, MI, MT, NH, NJ , NM, OR, PA, RI, SD, TX, VT, VA, WA, WV
An insurer may require, as a condition of eligibility for continued coverage in accordance with this section, that a covered person seeking continued coverage for a dependent child provide written documentation on an annual basis that the dependent child meets or continues to meet the requirements
Celebrate Annual Documentation!
How many states cover non-categorical adults? Sources: Klein and Schwartz, 2008; Dorn, et al., 2005. Note: comprehensive programs provide (a) benefits at least as generous as typical ESI to (b) at least all adults up to 100% FPL. 1115 waivers State-only funds Comprehensive 9 states : AZ, DE, HA, ME, MA, NM, NY, OR, VT 3 states : DC, MN, WA Less than comprehensive 12 states : AR, DC, IA, ID, IN, MD, MI, MO, MT, OK, TN, UT 1 state : PA
ASSENT to CONSENT Eastern Maine Medical Center A parent or guardian is generally required to sign for a patient under the age of 18. Patients aged 14-17 should also sign. See IDD 20.041. If an adult is unable to make or communicate medical decisions, then the following may sign in the priority given: agent under healthcare power of attorney, guardian, spouse, domestic partner, next-of-kin. See IDD 20.060 Indicate capacity of representative.