Action Alert: Ask Representatives to Stop Medicaid Cuts


Action Alert: Proposed Changes to Medicaid Will Cut Funding

Call Your Representatives Today!


Congress is moving quickly to repeal the Affordable Care Act (ACA or Obamacare) and replace it with the American Health Care Act, or AHCA. This bill will make drastic cuts to the Medicaid program affecting people with autism who are currently getting Medicaid, including those on Innovations home and community based waiver, those on the waiting list, and those who may need these services in the future.

The health-care bill is being debated now. The House of Representatives is moving quickly to push for a vote by the end of March. The Senate is planning to vote on the House bill before the mid-April recess.

We urgently need you to call your senators and representatives today and explain why the ACA and Medicaid are essential to people with disabilities and their families. People’s health, services, and lives are at stake.

Message: Do not cut and cap Medicaid. As it is currently written, the AHCA will cut an estimated $800 billion from Medicaid over the next 10 years.

  • Already lengthy waiting lists 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 personal care, mental health, prescription drugs, and rehabilitative services.
  • People with disabilities who require Medicaid services to live in their own homes, hold jobs, and participate in communities may be without those supports. Costs could shift to individuals or family members.
  • 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.
  • For additional information, see the Medicaid fact sheet developed by the Consortium for Citizens with Disabilities.

Take 5 minutes to call your representatives now!

Let them know:

  • I am your constituent.
  • I am a person with a disability, or I am a family member of someone with a disability, or I am a professional in the disability field.
  • I care deeply about health care, including Medicaid.
  • Briefly share your personal story; that is what will make a difference.
  • North Carolina is already using per-capita funding models and has 8-year waiting lists for many autism services.
  • Do not allow per-capita caps and cuts to Medicaid to be part of an ACA replacement.

Call now:

Sen. Richard Burr 202-224-3154

Sen. Thom Tillis 202-224-6342

NC congressional delegation (find which US House member represents you here):

  • 1st District: George “G.K.” Butterfield Jr. 202-225-3101
  • 2nd District: George Holding 202-225-3032
  • 3rd District: Walter Jones Jr. 202-225-3415
  • 4th District: David Price 202-225-1784
  • 5th District: Virginia Foxx 202-225-2071
  • 6th District: Mark Walker 202-225-3065
  • 7th District: David Rouzer 202-225-2731
  • 8th District: Richard Hudson 202-225-3715
  • 9th District: Robert Pittenger 202-225-1976
  • 10th District: Patrick McHenry 202-225-2576
  • 11th District: Mark Meadows 202-225-6401
  • 12th District: Alma Adams 202-225-1510
  • 13th District: Tedd Budd 202-225-4531


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

Every call you make counts! Literally. Staff and representatives are noting the issues and counting calls.

Thank you for taking action and making calls today!


ASNC Day on the Hill



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

  1. 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.
  2. 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!

  1. 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.
  2. Medicaid
    • 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.
  3. Education
    • 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 or 919-865-5068.




Public Policy News and Action: Group Home Bill Moves, No Medicaid Expansion, Federal ABLE Act Reintroduced, Federal Regs Leave Out ABA

GA Front

This policy update contains both an update on the North Carolina General Assembly (state laws) as well as actions by the US Congress and federal regulators (federal laws).

North Carolina General Assembly Update

Group Home Bill Moves

House Bill 5, which would extend temporary funding to residents of group homes who no longer qualify for personal care services, passed the Senate and returns to the House where they are expected to concur. The Senate committee amended the bill so that the funding also extends to residents of special care units, who assist people with dementia. In addition, the new version of the bill would clarify several dates and make technical language changes. This bill is not a permanent fix to the problem, as the funding will end June 30th. The Autism Society of North Carolina (ASNC) is hopeful that the General Assembly will work on a permanent funding solution to make sure that people can remain in their community homes. Read more about the issue and the bill here  and here.

  • TAKE ACTION: Thank your NC General Assembly House member and NC General Assembly Senator for extending these funds for group homes which ensures that people will be able to stay in their homes.  Remember, NC House and NC Senate districts changed this year, so you should check to see which district you are in and who currently represents you in the General Assembly on the new easy to use district map page.

NC General Assembly Says They Will Not Expand Medicaid

The NC House and Senate have passed bills (H 16  and S 4 ) which would prevent NC from expanding Medicaid to cover an estimated 500,000 low income individuals who would not qualify for health insurance coverage subsidies from the Federal government that make insurance more affordable under the Affordable Care Act. Without subsidies, advocates are concerned than many of these individuals, which include single people with disabilities and families of children with special needs, will not be covered by health insurance. Rural hospitals and other health care providers have expressed concerns that without health coverage, and with the loss of Federal funds for those without health care, hospitals will bear high costs for people who show up needing emergency care. Governor McCrory has indicated that with the problems in Medicaid and without more assurances of long term funding from the Federal government, he does not support expanding Medicaid. Read more here and here.

  • TAKE ACTION: ASNC supports expanding Medicaid to cover low income people, including those with autism spectrum disorder and their families, to ensure they have access to basic health care services. You can contact Governor McCrory and encourage him to veto this legislation, and say yes to expanding Medicaid. The Secretary of NC Health and Human Services has told the Legislature that problems in the Medicaid program that were recently identified in a state audit will be fixed by the end of the fiscal year. Let’s make sure we don’t leave people without healthcare in the coming years.

U.S. Capitol

Federal and Congressional Update:

ABLE Act Reintroduced

The US Congress has reintroduced the Achieving a Better Life Experience Act (ABLE Act) HR 647 which would allow individuals with disabilities and their families to set funds aside in tax free savings accounts (similar to 529 plans used to fund college educations) that could be used to help a individual with a disability with the costs of education, housing, transportation, technology assistance, and employment without adversely impacting means-tested Medicaid and Social Security benefits. These funds could be used in addition to those benefit programs and help people live more stable and economically independent lives.

ACTION: Senator Richard Burr has already signed on as co-sponsor of the Senate bill: please thank him. Urge Senator Kay Hagan to sign on to S 313 and ask your Representative in the US Congress to sign on to HR 647.  To find out who represents you in the US Congress go to the House page and to find out how to contact Senators Burr and Hagan got to the Senate page.

Federal Regulators Leave Out Autism Coverage

When the Affordable Care Act (ACA) was passed, it included the requirement to cover “behavioral health treatment.” Advocates worked with Congress to include this language in the bill to ensure coverage of autism therapies such as applied behavioral analysis (ABA). Recent federal regulations were released for coverage of behavioral health treatment in health care exchanges which are required under the ACA to act as a health care marketplace for those not currently covered by group health coverage. Despite significant advocacy by autism groups and families, these regulations unfortunately do not include autism therapies like ABA as part of the definition of “behavioral health treatment.”  This leaves many states that have passed autism insurance laws in recent years in limbo, with state regulators left with the decision of whether or not to include these therapies in their health care exchange marketplace. Read more on this at Disability Scoop.

In addition, the Federal government has decided not to define the habilitation benefit under the ACA rules. The definition of what is covered under habilitation services has been left up to individual states. ASNC, working with other advocates for people with special health care needs, submitted comments to the Federal government and the state Department of Insurance encouraging them to set a definition and a basic set of services for habilitation that would include services such as respite, hands-on care, one-to-one skill building, and other habilitative services that really make a difference in people’s lives. ASNC will continue to advocate on this issue and monitor the outcome of decisions about the healthcare that will be available through North Carolina’s health care exchange market.

  • TAKE ACTION: a North Carolina parent has created a nationwide White House petition to ask the President to respond to leaving ABA services out of federal regulations for the Affordable Care Act. Please sign the petition and share it with friends and neighbors, as well as through Facebook or other social media. You can sign the petition whether you agree with Obamacare or not: since the new health care law will be implemented next year, it should include services for those on the autism spectrum! The petition needs 100,000 signatures by March 24th so please sign now (You must register on the petition site to sign, but it’s worth it.)

To learn more contact Jennifer Mahan, Director of Advocacy and Public Policy, at

What’s in health reform (Affordable Care Act) for people on the autism spectrum?

Editor’s Note – Thanks to Jennifer Mahan, Autism Society of North Carolina Director of Government Relations for the following analysis of last week’s Supreme Court ruling on the Affordable Care Act.

The Supreme Court of the United States recently upheld the Affordable Care Act (ACA) which would expand health care coverage for many people in the United States. It’s a large and complicated law (click here for the Health Care Law website where you can read the complete text of ACA), and the regulations have yet to be written, but it contains a number of items that are of great benefit to people on the autism spectrum including:

  • Insurers must cover people regardless of pre-existing conditions, cannot put in place excessive waiting periods for coverage, and cannot selectively refuse to renew coverage.
  • Insurers cannot charge different premiums based on health status, gender or occupation.
  • Insurance companies have stricter limits on the use of lifetime or annual limits for covering certain health conditions.
  • Expands coverage for “behavioral health treatments” and habilitative services, which we believe will include autism therapies like applied behavioral analysis (ABA) and services that help improve and maintain social skills, communication skills, and reduce behavioral problems.
  • Allows parents to keep children on their health plans up to age 26.
  • Allows states the option to expand coverage of Medicaid to individuals with developmental disabilities (through a variety of home can community based options and flexible coverage options) as well as low-income people, including childless adults, who did not previously qualify for this coverage.
  • People who previously could not afford insurance qualify for subsidies to make health care insurance more affordable.
  • Small businesses get additional tax credits to offer health care coverage to employees.

For people who have co-existing mental health disorders:

  • Requires plans offered through state health exchanges and in the small group market to follow the mental health parity act of 2008, ensuring coverage of mental illnesses and emotional or behavioral disorders.
  • Encourages the use of medical homes and improves coordination of primary health care with other behavioral and mental health services.

While the ACA does not cover every person without health care and  does not apply to every kind of insurance, we believe there are many benefits to the law. Some provisions of the law have already gone into effect, and many more will go into effect in January of 2014.

The Autism Society of North Carolina will continue to provide updates about the ACA through this Blog, our monthly email newsletter and on our website.