How Proposed Health Care Cuts Would Harm Care for People with Intellectual & Developmental Disabilities

How Proposed Health Care Cuts Would Harm Care for People with Intellectual & Developmental Disabilities
How Proposed Health Care Cuts Would Harm Care for People with Intellectual & Developmental Disabilities

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The proposed American Health Care Act (AHCA) would cut Medicaid by an unprecedented $834 billion; gut the Affordable Care Act’s (ACA) consumer protections; and eliminate Medicaid expansion. For millions of individuals with intellectual and developmental disabilities (I/DD), these changes would be devastating.

Rolling Back Community Integration
Hundreds of thousands of adults and children with I/DD rely on Medicaid’s Home and Community Based Services (HCBS), including personal care services, employment supports, residential supports, and specialized therapies. HCBS can be the foundation for independence, freedom and community integration. Though HCBS are cost-efficient when compared to institutional care, HCBS are also optional for states to provide. Severe federal Medicaid cuts put HCBS services directly in the crosshairs of state budget cuts.
AHCA also puts children with I/DD at risk of institutionalization. Nearly all states disregard parental income for children with significant disabilities living at home. This option, called the “Katie Beckett program,” saves parents from the unbearable dilemma of having to place their child in institutional care, where parental income is automatically disregarded, just so their child can qualify for Medicaid. This program allows these children to get the care they need while living at home. However, these children tend to have expensive needs and providing families this humane pathway to coverage is optional for states. If AHCA is enacted, states will have an incentive to reduce enrollment, and access may be severely curtailed.

AHCA’s Medicaid cuts may thus break-up families and force individuals with I/DD into institutions, violating their right to live in the community and undermining decades of state and federal initiatives to rebalance Medicaid spending towards community-based care.

Longer Waitlists for Services
The majority of HCBS programs are delivered via Medicaid waivers. Waivers let states limit the number of people getting services and set special income limits to provide eligibility above regular Medicaid eligibility limits. Unlike regular Medicaid, states can set up a “waitlist” for waiver services. This means that individuals who meet the waiver program requirements may still have to wait for services until one of a limited number of slots becomes available. In fact, there are already almost half a million individuals with I/DD on these waiting lists. If Medicaid is cut by almost 25 percent, these waitlists are likely to get even longer as states struggle to provide required services to eligible individuals.

The Individual Market Will Exclude Individuals with I/DD
I/DD is, by definition, a pre-existing condition: it is a disability that occurs in the developmental period, usually prior to age 18. Many individuals with I/DD benefit greatly from receiving “habilitative services.” Habilitative services are currently considered an Essential Health Benefit (EHB), and therefore health plans must provide services including physical therapy, speech therapy, and occupational therapy.

It appears the Senate version of the AHCA will allow states waive requirements to provide EHBs. This means the insurers can choose not to provide habilitative services. Even if an individual with I/DD receives these services, the prohibition on lifetime and annual limits only applies to EHBs. If states can waive EHB requirements, insurers could impose lifetime and annual limits on habilitative services, effectively screening out families with children with I/DD or vastly limiting the coverage provided.

Eliminating Medicaid Expansion Harms Parents and Home Care Workers
Juggling doctors’ appointments, therapies, and school meetings may mean parents of children with I/DD cannot work full time, even if they get extra help in the home. Medicaid expansion helps these parents by providing health care to them so they can take care of their children. Similarly, the home care workers that provide HCBS often rely on Medicaid for their own care. One-in-three home care workers live in households that qualify for Medicaid under the Affordable Care Act’s Medicaid expansion. Medicaid expansion plays an essential role in indirectly supporting individuals with I/DD by making health care available to the workers who provide HCBS.

If AHCA becomes law, individuals with I/DD will face more institutionalization, longer waits for HCBS, lifetime and annual limits in private insurance, and less health care for their families and for home care workers.

For more information on how Medicaid helps individuals with I/DD, see NHeLP’s issue brief #3 in the Protect Medicaid series: Older Adults and Individuals with Disabilities.

Call your senators and urge them to vote against AHCA. For more information on AHCA and its impact on the Medicaid program, sign up for our email updates and follow us on Twitter and Facebook.

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