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Healthcare Transition for Youth with Intellectual and Developmental Disabilities

Samantha Crane, J.D.

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Policy Brief: Transition to Adulthood for Youth with ID/DD

Funded by Special Hope Foundation

What Does Transition to Adulthood Mean for Health Care?

New sources of health coverage

Medicaid or CHIP eligibility eligibility expires or changes

Adults receive insurance through employers Adults over 26 no longer covered by parents' insurance

New responsibilities

Adults legally empowered to make own health care decisions

Changing medical needs

Adults must acquire adult-oriented health provider, or, with a family provider, transition to adult model of care.

Health Coverage Continuity: What's the Deal?

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

Good News: ACA Expanding Coverage to Young Adults with ID/DD

Young adults can stay on parents' plans until age 26

In states that take advantage of Medicaid expansion, young adults earning less than 133% federal poverty level can get Medicaid.

Easier, faster than applying for SSI

Young adults earning > 133% FPL can get subsidized insurance

Insurance companies can't turn away adults based on ID/DD diagnosis

Continuing Challenges for Coverage Continuity

Lack of awareness of continued coverage options

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!

Navigating Coverage Transitions

Original Source of Coverage Parents Insurance Medicaid / CHIP Other or Uninsured

Only available in some states, income restrictions apply Employerbased insurance Require employment or other income

Individual Insurance (through exchange)

Income-based Medicaid (through expansion)

Must go through SSI application process Disabilitybased Medicaid (through SSI)

Destination Coverage

Transition to Self-Directed Care

As children, youth with disabilities rely on parents to make health care decisions
As youth with and without disabilities approach adulthood, they must take on greater role in making health care decisions Young adults have rights to information, privacy, autonomy

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

Transition to Adult-Oriented Doctors

Pediatricians are familiar with the health care needs of children, but may be less able to meet health care needs of adults:
Increased need for sexual/reproductive health care Increased need for expertise in conditions primarily affecting adults Need to transition to adult model of care, including self-direction

Family doctors treat both children and adults, but still need to transition to adult model of care

Barriers to Finding Adult Providers

Concerns about bringing a new doctor up to speed Difficulty transitioning to disjointed adult model of care Lack of adult providers who are familiar with needs of people with ID/DD, esp. those with communication challenges

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

Continue research on transition outcomes, best practices in transition support services

Income-Based Medicaid Eligibility

Affordable Care Act allows states to expand Medicaid eligibility to all adults below 133% of federal poverty line Expansion is fully federal funded through 2016 Streamlined eligibility determinations and enrollment

Income-based eligibility helps young adults with disabilities get Medicaid coverage without having to go through SSI application process

26 States have already decided to expand Medicaid!

Source: Kaiser Family Foundation

Health Care Transition Supports

Must help youth and families understand:

How to ensure continued health coverage

Transition to self-directed care

Transition to adult-oriented physician and/or model of care

Changes in health care needs through adulthood May also include discussion of independent living, employment, continuing education

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

Continued assessment of skills and identification of areas of continued support needs

Health Care Transition Supports

Through Schools: teach skills through general health education curriculum, with specific goals in Individualized Education Plan (IEP) Through Medicaid: Transition support may be provided as part of a home and communitybased services program or through EPSDT as part of health education component Through Health Plan or Primary Care Doctor: Provided during the course of check-ups, visits, case management

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:

Translate health care information

Determine the persons priorities and values Assist individual in making and communicating decision

Remind person to take medication, help monitor health signs and symptoms

Coordinating Sources of Supports

Enables use of funds from different sources
Youth enrolled in Medicaid are less likely to receive transition support from their privately insured counterparts: increased coordination with other sources of funding may improve this outcome

Promotes sharing of information, coordination of effort

Ensures that supports start early (by age 12 at latest) and continue through adulthood

Medical Home Model

Not a location but a framework:
Preventative care
Acute illness management Chronic condition management

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

Medical Home Model

Fewer than 50% of youth with special health care needs have a medical home Alterations to health care reimbursement policies may encourage doctors to adopt this model
As of 2011, seventeen states had already begun to explore use of Medicaid incentive payments to primary care practitioners to encourage compliance with medical home standards
Expanded inclusion of health home services in Medicaid State Plans may also improve access to transition services Reimbursable services must include benefits planning, preparation and planning for self-directed care, and planning for transition to adultoriented health care providers

Also need outreach and education on best practices

Transition Planning Education and Outreach

Includes outreach to parents, school systems, medical community Increases awareness of sources and best practices for transition support and supported decisionmaking Promote the assumption that adults with disabilities should take maximum role in health care management and decisionmaking

Topics for Future Research

Best practices in accommodating and supporting adult patients with ID/DD Areas of need in transition planning, including nutrition, sexual health, advance care planning

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),


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