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Contact Congress about Health-Care Bill and Changes to Disability Civil Rights

Congress is back from its August break and has begun looking at various legislative actions that would affect people with autism and other disabilities, including changes to health care and to the Americans with Disabilities Act.


Senate working on changes to Medicaid and individual health care

The US Senate is considering a bill similar to the one that was defeated in July: The Cassidy-Graham repeal bill includes cutting and capping funding to Medicaid. Among other things, the bill would allow states to make changes to remove coverage for pre-existing conditions and essential health benefits. While a congressional analysis of the bill’s impact on health coverage is not yet available, similar bills would have resulted in billions in cuts and millions of people losing access to services. You can read more about the Cassidy-Graham bill here, here, and here.

Take action: Call or email your US senators!

Bipartisan efforts to improve the individual market and make care more affordable, and which do not include cuts to Medicaid, are being discussed. Urge your US senators to work on a bipartisan solution and reject bills like the Graham-Cassidy bill that cut and cap Medicaid.

Senator Richard Burr

Senator Thom Tillis


Share a brief version of your story: who you are and how Medicaid cuts and health-care changes would affect you and/or your family. If you write, limit it to three short paragraphs or less.

  • I am your constituent, I live in [your NC city] in [your NC zip code].
  • I am a person with autism, or I am a family member of someone with autism, or I am a professional in the autism field.
  • I care deeply about health care and supports for people with autism, including Medicaid.
  • [If you or your family gets Medicaid funded services] I/We depend on Medicaid services/long term supports to live in our community. Briefly share your personal story of how Medicaid or other health care services help or could help; that is what will make a difference.
  • Ask them to:
    • Oppose the Graham-Cassidy Bill
    • Oppose bills that make cuts to Medicaid
    • Work in a bipartisan way to improve access to health care, including autism services and Medicaid.

Medicaid home- and community-based waivers, such as North Carolina’s Innovations and CAP programs, allow people with serious disabilities to live in their own or family homes, hold jobs, and participate in communities. Costs for vital treatments and supports could shift to individuals or their family members, possibly putting those services out of reach. This would affect those who are currently getting Medicaid, those on the waiting list, and those who may need these services in the future, as well as people with private health care coverage.


For families that have loved ones with autism, the consequences of these plans could include:

  • Already lengthy waiting lists of 8-10 years for disability waiver services will grow to record levels, and services may be severely limited. General Assembly legislators are moving to reduce NC waiting lists; these changes at the federal level could stop this from happening.
  • If funds become scarcer, states may decide to stop providing behavior and other therapy services, personal care, mental health treatment or other optional Medicaid services.
  • Coverage for intensive behavior services (including ABA) for children under Medicaid’s EPSDT could end.
  • Schools may no longer be reimbursed for services. This would only increase the burden on schools.
  • People could lose health care protections for pre-existing conditions, as well as coverage for habilitative services, mental health services, and other health care.

The proposed changes to health care and the budget recommendations all highlight the importance of understanding the complexities of Medicaid. Our friends at the Autistic Self Advocacy Network developed a great plain-language resource guide to Medicaid.


House hearings on bill to change the Americans with Disabilities Act

The US House of Representatives is considering H.R. 620 “The ADA Education and Reform Act of 2017” that would make changes to the Americans with Disabilities Act (ADA). For 27 years, the ADA has helped to ensure the civil rights of individuals with disabilities: that reasonable accommodations be made to ensure that people with disabilities can live, work, and participate in their communities in the way that everyone without a disability can.

When someone finds a barrier to access at business, they have two options: They can file a complaint with the U.S. Department of Justice (DOJ), which will investigate and decide whether a violation has occurred. DOJ may then enter into mediation with the person and the business to resolve the issue. This mediation means that many ADA issues can be resolved quickly and without the cost of going to court.  DOJ may also sue the business on the person’s behalf if that is needed. Alternatively, people with disabilities may file a lawsuit in court, bypassing DOJ altogether. These options do allow for relatively quick resolution of the problem and ensure that the individual’s civil rights are protected.

If the ADA Education and Reform Act is passed, however, a person with a disability would be required to give a written notice to a business owner who has barriers to access. The business owner would then have 60 days to even acknowledge that there is a problem, and then another 120 days to make substantial progress toward correcting the violation. In other words, people with disabilities would be forced to wait 180 days to enforce their civil rights. And it would be up to the person with the disability to understand and cite the specific sections of the ADA that were violated in their written notice. This would be the only civil rights law that would shift that requirement to the person whose rights have been violated. Other civil rights laws, rightly, require businesses to be aware of how to accommodate people using their service or employed by them without violating their civil rights.

The National Disability Rights Network has set up a webpage to enable you write to your US House of Representatives member to oppose changes to the ADA. Once you enter your ZIP code, it will locate your representative and allow you to email them. If you prefer to call, their phone number will be listed as well. As always, we encourage you to personalize you message and share any experience you have about how the ADA has helped you or your family.


Thank you for taking action. Your call, your email, your voice matters. Congress is noting the stories coming into their offices. We know that all of our advocates made a big, and effective, push to stop recent bills that would have cut and capped Medicaid. Please keep up the effort!

To learn more about how to advocate with your legislators, see our website.

The Autism Society of North Carolina will continue to monitor federal policy changes and post updates and links to resources about health-care proposals. Please be on the lookout for our action alerts so that you know when the autism community needs you to advocate with your elected representatives. Sign up for public policy emails on our website.


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