The Autistic Self Advocacy Network (ASAN), the leading nationwide 501(c)(3) advocacy organization by and for autistic people ourselves, applauds the defeat of the so-called Health Care Freedom Act (HCFA), or “skinny repeal” of the Affordable Care Act. This legislation would have deprived millions of Americans of health coverage and would have opened the door to make deep cuts to Medicaid, resulting in death or institutionalization for many in the disability community. Although some in Congress are likely to continue to propose legislation that would make significant cuts to Medicaid and other critical healthcare programs for people with disabilities, the disability community’s committed advocacy has put Congress on notice. Any future attempts at health care legislation must meet the needs of all Americans, must leave the Medicaid program intact, and must include the disability community from the beginning.
In the past several weeks, Congress considered both the Better Care Reconciliation Act of 2017 (BCRA), a proposal to repeal the Affordable Care Act (ACA) without any replacement, and, finally, the HCFA. All of these proposals would have made meaningful health coverage inaccessible for millions of people, including many people with disabilities and pre-existing conditions. The HCFA and BCRA would have allowed states to waive minimum requirements for health insurance and the full repeal of the ACA would have eliminated those requirements entirely. This means that insurance companies would have been allowed to bring back annual and lifetime caps on care, discriminate against people with preexisting conditions in many circumstances, and refuse to cover services such as mental health, speech, and occupational therapies that help us gain and maintain independence and autonomy. The Congressional Budget Office (CBO) estimated that if the BCRA had passed, up to one half of the US population lives in states that would have cut minimum requirements for insurance coverage, and that 22 million people would have lost all health insurance.
The repeal effort was also a step toward fundamentally destroying the Medicaid program. ASAN opposes any legislation that would undermine the Medicaid program. Hundreds of thousands of autistic individuals rely on Medicaid as our primary source of health care. Medicaid is also the primary source of funding for the home and community-based supports and services waivers that help us remain in our homes as opposed to institutions. Although many autistic people are eligible for Medicaid as a result of our disability, others rely on the Medicaid expansion, Medicaid buy-in programs for workers with disabilities, or other eligibility categories.
According to the Congressional Budget Office (CBO)’s report, the BCRA would have cut Medicaid by $772 billion over ten years. The version passed by the House, the American Health Care Act, also would have cut Medicaid by $880 billion. As ASAN has repeatedly warned, it is impossible to make cuts of this size to the Medicaid programs without dramatically cutting care, especially for people who rely on home and community-based services and people with complex health care needs.
Despite its far-reaching implications for the disability community, disability advocates were not included in the drafting or development of any of these bills. Instead, it was kept a secret from the public and from health and disability advocates until hours before today’s vote. Its proponents then brought it to a vote without any hearings, markups, or bipartisan support. This exclusion of the major communities that would be affected by health care reform is unacceptable and undemocratic.
In response to these proposals, the disability community mobilized on a massive scale to make its concerns known. People with disabilities attended town hall meetings; called, faxed, and wrote letters to their congressional representatives; staged sit-ins in Washington, DC and in their home districts; and shared their stories on social media. The failure of these efforts to repeal the ACA is a testament to the power of voters with disabilities and our families.
ASAN hopes that, going forward, Congress will proactively engage with disability advocates in order to develop meaningful, bipartisan proposals that make healthcare better for everyone and increase access to quality, affordable coverage rather than eviscerating the services that help us stay independent. If not, the disability community is more than prepared to raise our voices once again.
The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for autistic people. ASAN was created to serve as a national grassroots disability rights organization for the autistic community run by and for autistic Americans, advocating for systems change and ensuring that the voices of autistic people are heard in policy debates and the halls of power. Our staff work to educate communities, support self-advocacy in all its forms, and improve public perceptions of autism. ASAN’s members and supporters include autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators, and friends.