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ap ro je c to f
http://autisticadvocacy.org/wp-content/uploads/2013/12/HealthCareTransition_ASAN_PolicyBrief_r2.pdf
New responsibilities
Adults must acquire adult-oriented health provider, or, with a family provider, transition to adult model of care.
76% of uninsured young adults report foregoing medical care because of high costs Before the Affordable Care Act, nearly 30% of youth between ages 18 and 24 were uninsured, largely due to aging out of coverage.
Affordable Care Act allows adults to stay on parents' plans until age 26 But youth with disabilities who relied on Medicaid or CHIP still age out of child-focused eligibility programs and must apply for adult-oriented insurance
Young adults earning > 133% FPL can get subsidized insurance
Difficulty applying for some programs: in states that don't expand Medicaid, young adults may have to apply for disability-based Supplemental Security Income (SSI) in order to get into Medicaid.
This can take months or years!
Only available in some states, income restrictions apply Employerbased insurance Require employment or other income
Destination Coverage
Challenges to Self-Direction
1. Perception: young adult is not capable of making health care decisions
May lead to guardianship petition May also lead to providers speaking directly to helpers and not to the young adult
2. Reality: young adult has difficulty communicating, understanding health information, and/or managing health regimens
Without adequate support, may lead to missed diagnoses, inconsistent adherence to treatment plans, other adverse health outcomes
After the age of majority, all youth deserve to be treated as adults and to experience an adult model of care.
American Academy of Pediatrics, American Academy of Family Physicians, and American College of Physicians-American Society of Internal Medicine
Challenges to Self-Direction
Transition to self-direction requires advance preparation: only 40% of youth with special health needs received recommended Maternal and Child Health Bureau transition planning services Providers may not know how to support young adults with ID/DD in self-direction
Compared to other youth with special health care needs, youth with autism spectrum diagnoses are only two-thirds as likely to be encouraged to take responsibility for their own health care when they become adults
Others with developmental or psychiatric disabilities are also unlikely to be encouraged to take on adult roles
Family doctors treat both children and adults, but still need to transition to adult model of care
Recommendations
Expand access to Medicaid through incomebased eligibility criteria Provide youth with transition support, supported decisionmaking services Expand support for medical home model Education and outreach on transition planning
Income-based eligibility helps young adults with disabilities get Medicaid coverage without having to go through SSI application process
Additional Strategies
Visiting prospective providers
Preparing portable medical summary, care plan, and comprehensive medical record for destination provider
Should also include emergency plans, identification of necessary accommodations or supports
Supported Decisionmaking
Framework to support those with difficulty communicating, understanding health decisions, or adhering to medical advice Helps build skills, promote autonomy Person chooses supporter or support network that may:
Remind person to take medication, help monitor health signs and symptoms
Ensures that supports start early (by age 12 at latest) and continue through adulthood
Ensures central coordination of care May help those who have difficulty coordinating care, conveying health information to new healthcare providers and specialists Helps treatment team share expertise on how best to work with individual
Best practices in coordinating transition services through schools, DD agencies, healthcare providers
Qualitative research on experiences of young adults with ID/DD
See, e.g., AASPIREs research model, described in Comparison of Healthcare Experiences in Autistic and Non-Autistic Adults: A CrossSectional Online Survey Facilitated by an Academic-Community Partnership, published in Journal of General Internal Medicine (Nicolaidis et. al., 2012), http://aaspire.org/inc/publications/hc1AsurveyJGIM.pdf
Questions?
This concludes our program for today. If your question was not answered during this webinar or if you have additional questions, please send them to Phuong Nguyen (pnguyen@autismnow.org) and well be delighted to work with you directly.
For additional information about The Arc and Autism NOW, please contact us at 1-855828-8476 or www.autismnow.org.