Autistic Self Advocacy Network Webinar with Autism NOW January 21 2014

8/13/2019 Autistic Self Advocacy Network Webinar with Autism NOW January 21 2014

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aproject of

Healthcare Transition forYouth with Intellectualand Developmental

DisabilitiesSamantha Crane, J.D.


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Policy Brief:Transition to Adulthood for

Youth withID/DD

Funded by Special HopeFoundation

http://autisticadvocacy.org/wp-content/uploads/2013/12/HealthCareTransition_ASAN_PolicyBrief_r2.pdf


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Health Coverage Continuity: What'sthe Deal?

76% of uninsured young adults report foregoingmedical 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 onparents' plans until age 26

But youth with disabilities who relied on Medicaid orCHIP still “age out” of child-focused eligibilityprograms and must apply for adult-orientedinsurance


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Good News: ACA ExpandingCoverage to Young Adults with

ID/DD Young adults can stay on parents' plans until

age 26

In states that take advantage of Medicaidexpansion, young adults earning less than133% federal poverty level can get Medicaid.

Easier, faster than applying for SSI

Young adults earning > 133% FPL can getsubsidized insurance

Insurance companies can't turn away adults

based on ID/DD diagnosis


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Continuing Challenges for CoverageContinuity

Lack of awareness of continued coverageoptions

Difficulty applying for some programs: in statesthat don't expand Medicaid, young adults mayhave to apply for disability-based SupplementalSecurity Income (SSI) in order to get into

Medicaid.This can take months or years!


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Transition to Self-Directed Care

• As children, youth with disabilities rely onparents to make health care decisions

• As youth with and without disabilities approachadulthood, they must take on greater role inmaking health care decisions

• Young adults have rights to information,privacy, autonomy


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Challenges to Self-Direction

1. Perception: young adult is not capable ofmaking health care decisions

May lead to guardianship petition

May also lead to providers speaking directly to helpersand not to the young adult

2. Reality: young adult has difficultycommunicating, 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


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American Academy of Pediatrics, American

Academy of Family Physicians, and AmericanCollege of Physicians-American Society ofInternal Medicine

“After the age of majority, allyouth deserve to be treatedas adults and to experience

an adult model of care.”


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Challenges to Self-Direction

• Transition to self-direction requires advance preparation: only40% of youth with special health needs received recommendedMaternal 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 tobe encouraged to take responsibility for their own health carewhen they become adults

• Others with developmental or psychiatric disabilities are alsounlikely to be encouraged to take on adult roles


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Transition to Adult-Oriented Doctors

• Pediatricians are familiar with the health careneeds of children, but may be less able to meethealth 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


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Barriers to Finding Adult Providers

• Concerns about bringing a new doctor “up tospeed”

• Difficulty transitioning to “disjointed” adult model

of care• Lack of adult providers who are familiar with

needs of people with ID/DD, esp. those withcommunication challenges


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Recommendations

• Expand access to Medicaid through income-based 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, bestpractices in transition support services


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Income-Based Medicaid Eligibility

• Affordable Care Act allows states to expandMedicaid eligibility to all adults below 133% offederal poverty line

• Expansion is fully federal funded through 2016• Streamlined eligibility determinations and

enrollment

• Income-based eligibility helps young adults withdisabilities get Medicaid coverage withouthaving to go through SSI application process


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26 States have already decided to expandMedicaid!

Source: Kaiser Family Foundation


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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/ormodel of care

Changes in health care needs through

adulthood

May also include discussion of independent living,employment, continuing education


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Additional Strategies

• Visiting prospective providers

• Preparing “portable medical summary,” careplan, and comprehensive medical record for

destination provider• Should also include emergency plans, identification

of necessary accommodations or supports

• Continued assessment of skills andidentification of areas of continued supportneeds


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Health Care Transition Supports

• Through Schools: teach skills through generalhealth education curriculum, with specific goalsin Individualized Education Plan (IEP)

• Through Medicaid: Transition support may beprovided as part of a home and community-based services program or through EPSDT aspart of health education component

• Through Health Plan or Primary Care Doctor:Provided during the course of check-ups, visits,case management


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Supported Decisionmaking

• Framework to support those with difficultycommunicating, understanding healthdecisions, or adhering to medical advice

• Helps build skills, promote autonomy• Person chooses supporter or support network

that may:

• “Translate” health care information

• Determine the person’s priorities and values

• Assist individual in making and communicating decision

• Remind person to take medication, help monitor health signs

and symptoms


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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 insuredcounterparts: 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 atlatest) and continue through adulthood


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“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 newhealthcare providers and specialists

• Helps treatment team share expertise on howbest to work with individual


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“Medical Home” Model

• Fewer than 50% of youth with special health careneeds have a medical home

• Alterations to health care reimbursement policies mayencourage doctors to adopt this model

• As of 2011, seventeen states had already begun to explore use ofMedicaid incentive payments to primary care practitioners to encouragecompliance with medical home standards

• Expanded inclusion of health home services in Medicaid State Plansmay also improve access to transition services

• Reimbursable services must include benefits planning, preparation andplanning for self-directed care, and planning for transition to adult-oriented health care providers

• Also need outreach and education on best practices

T iti Pl i Ed ti d


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Transition Planning Education andOutreach

• Includes outreach to parents, school systems,medical community

• Increases awareness of sources and best

practices for transition support and supporteddecisionmaking

• Promote the assumption that adults withdisabilities should take maximum role in healthcare management and decisionmaking


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Topics for Future Research

• Best practices in accommodating and supporting adultpatients with ID/DD

• Areas of need in transition planning, includingnutrition, sexual health, advance care planning

• Best practices in coordinating transition servicesthrough schools, DD agencies, healthcare providers

• Qualitative research on experiences of young adults

with ID/DD• See, e.g ., AASPIRE’s research model, described in Comparison of

Healthcare Experiences in Autistic and Non-Autistic Adults: A Cross-Sectional Online Survey Facilitated by an Academic-CommunityPartnership, published in Journal of General Internal Medicine (Nicolaidiset. al., 2012), http://aaspire.org/inc/publications/hc1AsurveyJGIM.pdf

http://aaspire.org/inc/publications/hc1AsurveyJGIM.pdfhttp://aaspire.org/inc/publications/hc1AsurveyJGIM.pdf


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Questions?


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This concludes our program for today. If yourquestion was not answered during this webinar

or if you have additional questions, please sendthem to Phuong Nguyen

([email protected]) and we’ll bedelighted to work with you directly.


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For additional information about The Arc and Autism NOW, please contact us at 1-855-

828-8476 or www.autismnow.org.

Autistic Self Advocacy Network Webinar with Autism NOW January 21 2014

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