This article was contributed by Jennifer Mahan, Director of Advocacy and Public Policy.
The Autism Society of North Carolina traveled to Washington, D.C., to participate in the Autism Society of America’s annual Day on the Hill for Autism Society advocates. Our goal in participating this year was to make sure that we voiced to Congress the critical need for services and supports for people of all ages on the autism spectrum, as legislators consider affordable health care access, Medicaid funding, and education issues.
ASNC Director of Policy Jennifer Mahan met with staff from our congressional delegation on Capitol Hill February 16 to discuss our concerns about affordable, comprehensive health care; Medicaid’s importance to people with disabling conditions; the need for adult services including employment supports and housing; and the right to a free appropriate education that meets the needs of students with disabilities.
Many of our current members of Congress are aware of autism issues, as well as the work of ASNC, based on their connections to constituents, families and ASNC’s long history of service in NC. Despite this familiarity, with so many changes happening on a national level it is more important than ever for all of us to make the connection between the policy decisions faced by our members of Congress and the impact of those decisions on the lives of people with autism and their families.
What You Can Do
- Learn who represents you and North Carolina in Congress.
- You are represented by two US senators, Richard Burr and Thom Tillis.
- You are represented by one member of the US House of Representatives, based on where you live. You can find out which US House member represents you by entering your street address on the THIRD map at the bottom of this page. (Please note that only the third map on this page is for Congress. The other maps are for the NC General Assembly.) Or you can call the Congressional Switchboard at 202-224-312 for info on your members of Congress.
- Tell your representatives about your experiences with autism, as a person on the spectrum, as a family member, as a professional, as someone who cares:
- Call or email. Handwritten letters take weeks or months to reach Congress because of security measures. Calling or emailing is better. Better still is inviting your member of Congress to a local autism event or local service organization to see things firsthand.
- Say you live in their district. (OR for your two senators, say that you live in NC).
- Tell them the basics: who you are, how autism has affected you, why the issue is important, and why retaining or getting access to health care and education services has helped. Keep it to the equivalent of a page or a five-minute conversation. Short summaries are more likely to generate questions and interest in your issue.
- Be respectful and positive, but firm. Ask for what you need. Some talking points are below. See our toolkit Advocacy 101 for more on working with elected officials.
Talking Points to Advocate on Issues that Matter
We know that health and disability issues can be complex. Below are some points that you can use in your discussions with Congress. MOST IMPORTANT is telling your story about autism and what is working or what could be improved with the help of your member of Congress. You don’t need to be a policy expert!
- The Affordable Care Act/“Obamacare”
- The ACA should not be repealed without a plan for replacement that maintains or improves access to health care.
- People with autism have benefited from parts of the ACA that require coverage for pre-existing conditions, the ability to stay on families’ health-care insurance until the age of 26, and the ability to buy affordable coverage on the health marketplace.
- Autism is a complex disorder that often includes other physical and neurological conditions.
- Any health-care package must include both rehabilitative AND habilitative services, mental health and addiction services coverage, behavior treatment, and prescription drug coverage.
- Because of changes in the ACA, North Carolina has dramatically improved access to children’s health care, which improves access to developmental screening, early identification of autism, and early interventions.
- Health care must be affordable and address high cost-sharing requirements and high premiums. Many families already struggle with added costs of raising a child with special health needs. Many adults on the spectrum are unemployed or under-employed, so age cannot be the only factor in determining health-care subsidies.
- Medicaid provides health-care services, long-term care services, and other supports that maintain health, functioning independence, safety and well-being to an estimated 500,000 children and adults with disabilities in North Carolina.
- State Medicaid programs provide critical screening, early intervention, and home-based health programs for children with autism under Early and Periodic Screening, Diagnostic and Treatment (EPSDT). Early screening, diagnosis, and intervention are critical to preventing long-term disability.
- NC is already doing a good job with its federal Medicaid funds: NC has used managed-care principles, prevention services, and health data to effectively manage Medicaid costs.
- Do not cut Medicaid funding. Program cuts, along with block granting or per capita caps would hurt people with autism who rely on Medicaid for essential services. These costs get passed along to beneficiaries, families, and providers who are already doing more with less.
- Additional cuts or restrictions on Medicaid funding could prevent NC from addressing the 12,000 people with developmental disabilities, including autism, on NC’s Medicaid waiver waiting list.
- The Individuals with Disabilities Act (IDEA) and the Every Student Succeeds Act (ESSA) ensure that students with disabilities get the education they need and that schools are subject to a strong accountability system to ensure all students succeed.
- IDEA is parent-driven: parents ask for evaluations, participate in planning, and can access procedural protections to ensure that their child is able to learn.
- The federal IDEA act is not perfect, but it is assuring families that their child is able to attend school and get access to the curriculum in the least restrictive environment. It is CRITICALLY important to assure these rights for students with disabilities.
- Schools are already challenged to meet the needs of students with disabilities: right now only about 15% of the funding for educating special needs students comes from the federal government though much more was promised. Please fully fund special education.
If you have questions about policy issues, please contact Jennifer Mahan, ASNC Director of Advocacy and Public Policy, at firstname.lastname@example.org or 919-865-5068.
Tags: affordable care act, ASNC, autism, autism advocacy, autism health care, Autism Society of America, autism society of NC, Autism Society of North Carolina, autism special education, Autism spectrum, Autism Spectrum Disorder, autism treatment, medicaid, special education