Public Policy Update


This article was contributed by Jennifer Mahan, Director of Advocacy and Public Policy.


Federal News

American Health Care Act (AHCA) Update

Thank you for calling your US House of Representatives member regarding cuts to Medicaid in the AHCA and the importance of health-care coverage for autism. Your direct advocacy matters! The US House was not able to get enough votes to support the proposed replacement for the Affordable Care Act (ACA). For now, the legislation has been shelved; however, Congress and the Trump administration continue to discuss new proposals around both an ACA replacement and Medicaid funding changes. The Autism Society of North Carolina will continue to monitor federal policy changes. We encourage you to read up on federal proposals; we will be posting occasional updates, alerts, and links to resources about health-care proposals. For more information, read the Kaiser Family Foundation policy analysis comparing AHCA, ACA, and other proposals.

Medicaid is a program that serves millions of people with disabilities and complex health conditions, including people on the autism spectrum. Medicaid Home and Community Based waivers, such as North Carolina’s Innovations and CAP programs, allow people with serious disabilities to live at home with families or in community settings. If you are not already aware of how Medicaid supports people, we urge you to begin reading up on program. ASNC will be posting occasional resources and links to learn more about Medicaid in NC and across the country.


Supreme Court Decision about Special Education

The Supreme Court sided with parents who removed their son from school because of an inadequate IEP. In the Court’s ruling, it said that the “appropriate” portion of the “free and appropriate education” guaranteed by IDEA, should be more than just ensuring that children make barely above minimum progress. This appears to indicate legal support for higher standards for IEPs and student advancement: that students with disabilities should be making “meaningful” progress in their education.

What is not clear from the ruling is how schools will help students achieve this progress when IDEA has never been fully funded at the federal level as was promised when the bill passed. Schools are under pressure to serve more special education students with limited resources and a shortage of special education teachers. The Autism Society continues to advocate and the state and federal levels for special-education funding and education programs that address the unique needs of students on the autism spectrum. To learn more, read the National Disability Rights Network statement on the ruling.


North Carolina and NC General Assembly News

NC ABLE Update

The NC Department of the State Treasurer has just announced that checking and debit options for NC ABLE accounts are now available. NC ABLE allows people to save money to pay for future or current expenses without losing eligibility for certain government benefit programs.

Signing up for NC ABLE accounts is quick and easy. For more information about how NC ABLE might benefit you or someone you know, see the FAQs.

State Budget

The governor has release his budget proposal outlining priorities for the new administration. The release of this budget also is the start of the legislative budget process for North Carolina. The sovernor’s budget proposal has a number of funding recommendations that could help those on the autism spectrum. Details are below, but include proposals to fund education support, adult guardianship, special assistance, early child development agencies, community-based MH/DD /SA services, complex children’s services, Medicaid services, and Innovations waiver slots.

The NC Senate will start the General Assembly budget process this year by introducing their version of the budget legislation. The General Assembly budget bills are not required to be based on the governor’s proposals. House and Senate leaders are said to be working closely on their proposals, and we expect to see details in the next few weeks.

ACTION: This is a great time to introduce yourself to your state senator and ask North Carolina’s General Assembly to fund much-needed services for autism.

1) If you don’t yet know which state senator represents you, check the second (middle) map on this webpage.

2) Click the link to connect with the district page and find the senator’s email or mailing address. Most are, and the address is listed above their email.

3) Write a short, friendly email or handwritten note:

  • Introduce yourself and mention you live and/or work in their district
  • Tell them how you are connected to autism (family, self-advocate, work with, etc.)
  • Ask them, politely, to fund one or more of the governor’s proposals and explain in a sentence or two how that will help someone with autism. For example: “We will be waiting for 7 or more years for services unless Innovations waiver slots are funded.”

This is just one example of what to write; use one that best fits your situation. For more help on advocating, see our tips or our Advocacy 101 toolkit. If you need help figuring out what to say in your email, please contact Jennifer Mahan, our Director of Advocacy and Public Policy, at


Governor’s Budget Proposal Details


  • More School-Based Personnel to Improve Student Outcomes. Establishes a new allotment to be allocated to LEAs based on average daily membership (ADM). Provides $20 million from lottery receipts as flexible funding for LEAs to hire additional school-based personnel who will have a direct impact on improving student outcomes, including assistant principals, nurses, behavioral support staff, teaching assistants, and other instructional support personnel.

Health and Human Services

  • Adult Protective Services/Guardianship. Provides$4.6 million for 2017-18 and 2018-19. Improves the safety of adults who are elderly or disabled and who are subject to abuse, neglect, and exploitation. County Departments of Social Services receive thousands of reports annually and must evaluate and, when needed, provide adult protective services (APS). Additional funding will provide aid to counties to hire social workers needed to reduce APS caseloads and thereby increase quality of service. In addition, there is an increasing need for public legal guardians, who are required when an adult is deemed by the courts to be incapable/incompetent. Funds are provided to increase capacity to provide guardians through local entities.
  • State County Special Assistance. Provides a cash supplement to help low-income, elderly, or disabled individuals remain in their homes or live in licensed adult care homes through the State County Special Assistance program. This program is shared at a 50% participation rate between the state and county. Increased funding is needed to ensure this living assistance benefit is available based upon anticipated enrollment and payments.
  • Invests in Children’s Development Services Agencies. Supports children and families by investing in the Children’s Developmental Services Agencies (CDSA). The 16 regional CDSAs, which serve children who have developmental disabilities and are ages 0-3, require additional staff to comply with federal mandates. Current staff maintain high caseloads that impede their ability to complete evaluations and assessments and initiate services within the required timelines. The request would fund clinical personnel and service coordinators. ($2,541,482R FY17-18 $6,397,430R FY 18-19)


  • Targeted Reinvestment of Community Services Funding. The base budget increases community services funding by $152.8 million on a recurring basis. Of these funds, $105.8 million in FY 2017-18 and $83.4 million in FY 2018-19 will be allocated to the Local Management Entities/Managed Care Organizations (LEM/MCOs) to meet the service needs of their catchment areas. The remaining balances, $47.0 million in FY 2017-18 and $69.4 million in FY 2018-19, will remain in the community service system, but targeted re-investments to address emerging service needs including those for dually diagnosed children (I/DD and MI), and local in-patient bed capacity. Other targeted investments include support for Innovation waiver slots and housing and supported employment pursuant to the settlement with the US Department of Justice.
  • Disability Rights of North Carolina Settlement – Specialty Treatment and Assessments.

Funds the department’s settlement agreement with Disability Rights NC. The agreement will build system capacity to better serve children with a dual diagnosis of intellectual/ developmentally disabled (I/DD) and behavioral health needs. The request will fund comprehensive assessments and services, to include home health care, rehabilitative and personal care services, and an outpatient clinic at the Murdoch Center. (This is funded through the targeted reinvestment of community services funding in the base budget.)


  • Medicaid Rebase. Provides funds for changes to enrollment, utilization, costs, rates, and services associated with the Medicaid program. This recommendation reflects the amount of change from the base budget to fund the current Medicaid program in the upcoming biennium. This would include funds to address autism behavior services under Early Periodic Screen Diagnosis and Treatment requirements (EPSDT).
  • Expand DD Innovation Waiver Slots. Provides funds for changes to enrollment, utilization, costs, rates, and services associated with the Medicaid program. This recommendation reflects the amount of change from the base budget to fund the current Medicaid program in the upcoming biennium.
  • Extend DD Innovation Waiver Slots to Lower-Acuity Individuals. Fully funds an additional 1,000 NC Innovations waiver slots, effective January 1, 2018, for individuals that do not need the full range or intensity of services offered under the current waiver, but who will benefit from service at their specific level of need. (This is funded through the targeted reinvestment of community services funding in the base budget.)

The Senate and House are coordinating on the development of NC’s two-year budget, set to roll out in the coming weeks.

If you have questions about policy issues, please contact Jennifer Mahan, ASNC Director of Advocacy and Public Policy, at or 919-865-5068.

Governor Proposes New Funding to Assist Autism Community


Today Governor Pat McCrory announced new initiatives that will be included in his proposed 2016 budget to be presented to the legislature before this year’s short session.

The Autism Society of North Carolina (ASNC) and other partners have worked with the governor’s office and the Department of Health and Human Services (DHHS) to include these new dollars that will provide for individuals on the autism spectrum and their families.

“We appreciate that Governor McCrory, Secretary Brajer, and Deputy Director of Division of Medical Assistance Dave Richard from the NC Department of Health and Human Services have put money towards needed services for the autism community,” said Tracey Sheriff, CEO of ASNC. “The proposed budget provides for a variety of services from case management, to evidence-based therapies and early intervention programs. We look forward to working with the legislature to make sure that these priorities make it into the final budget.”

Highlights of the announcement include:

Medicaid services expansion for people with developmental disabilities and autism 

  • The governor’s proposal adds 250 Medicaid Innovations Waiver slots to provide services and help individuals with developmental disabilities and autism continue to live in their community of choice. ($2.5 million)
  • Families who rely on Medicaid for support (waiver and Medicaid health insurance) will have the ability to access the same services for autism that were approved under last year’s autism insurance legislation through the state’s network of managed care organizations (MCOs). This means children with Autism Spectrum Disorder will be eligible for services (such as Applied Behavior Analysis and other evidence-based practices) under the Early and Periodic Screening, Diagnostic and Treatment program, or EPSDT. The Department of Health and Human Services will work with stakeholders to develop a Medicaid State Plan Amendment that outlines delivery of the covered intensive behavioral health treatments. This State Plan Amendment will be submitted to the Centers for Medicare & Medicaid Services by Sept. 1, 2016. To read more about EPSDT services for individuals with ASD see our March 18 blog here.

Case Management/Crisis Services – Invests in child facility-based crisis centers that work closely with Juvenile Justice, foster care programs, and schools. These crisis centers will collaborate with case managers and families to address the behavioral health needs of children who are dually diagnosed with intellectual and other developmental disabilities. ($30 million)

Ensure high quality early childhood programs by increasing Pre-K slots – Finally, the governor’s proposal will increase access to high quality education for an additional 400 at-risk 4-year-olds, including those on the autism spectrum. ($2 million)

The Autism Society of North Carolina will continue to advocate for and monitor the progress of these proposals as the legislature reconvenes. To read the full press release, click here.

FAQs related to SB 676: Autism Health Insurance Coverage

Background: After six years of working to pass coverage of autism treatments under health insurance through both chambers of the North Carolina General Assembly, the Autism Society of North Carolina (ASNC) decided to take a new approach to the problem: ASNC came together with other North Carolina advocacy groups, professionals, clinicians, and insurers to work toward a set of agreed-upon recommendations to the General Assembly for providing coverage for Autism Spectrum Disorder. The goal was to have an achievable, measured approach that would provide for a broad range of treatment options while assuring an annual benefit amount. Families and children cannot wait another year.

What does SB 676 do?

  • SB 676 requires health plans to cover treatment of autism for children up to age 18.
  • Requires coverage of Adaptive Behavior Treatment, which includes Applied Behavioral Analysis (ABA) therapy and other evidence-based therapies such as TEACCH, Pivotal Response, etc.
  • Coverage for Adaptive Behavior Treatment is limited to $40,000 per year.

Who supports the bill?

A coalition of NC-based mental health professionals, families, physicians, advocates, and insurers, including

  • The Autism Society of North Carolina
  • The Arc of North Carolina
  • TEACCH Autism Program
  • Duke Center for Autism and Brain Development
  • North Carolina Council of Child and Adolescent Psychiatry
  • North Carolina Pediatric Society
  • North Carolina Psychiatric Association
  • North Carolina Psychological Association
  • Blue Cross and Blue Shield of North Carolina

Does this bill cover all health insurance plans?

This law covers the large group plans for companies in North Carolina that follow state law. As we have pointed out in our policy paper on insurance, state laws can only affect certain kinds of health insurance plans that comprise a small part of the health plan marketplace. Employers are more likely to offer coverage voluntarily, even when they are not required to do so, in states where coverage is required. ASNC continues to advocate for better coverage in all plans, but change happens one step at a time.

Why does the bill not require more coverage? What about adults? Or those who need more than $40,000 in adaptive behavioral treatments?

ASNC and other groups brought up all of these issues in our discussions about the legislation. Every bill in the General Assembly is a compromise. Policymaking is all about windows of opportunity: they are open for a short period of time and ASNC felt that is was important to work to pass some kind of benefit now, to make sure families and children would get a benefit while we had the support of the General Assembly. The insurance marketplace covered under this bill is the same as previous bills. The benefit cap is higher in this bill at $40,000 and also is required to rise with inflation. Unlike previous bills, this bill does not have a requirement that individuals be diagnosed by age 8 to get coverage.

Does SB 676 remove protections of mental health parity from children with autism?

Section 2(i) on page 3, lines 45-50, requires health benefit plans to provide coverage for autism in accordance with federal mental health parity.

Why is the definition of mental illness under mental health parity changed?

This definition only applies to insurance coverage and specifically to the coverage for Adaptive Behavior Treatment for autism. Without this change, insurers cannot add a behavioral benefit that has limits. There are many definitions throughout the general statutes that define mental illness and disability. This bill does not affect any of those definitions.

The State Employee Health Plan limits coverage of Applied Behavioral Analysis (ABA) therapy. Do they have to follow mental health parity laws for their ABA therapy benefit? Did they have to make changes to mental health parity?

The State Health Plan is not required to follow mental health parity laws for ABA therapy. Children and youth are getting ABA therapy as part of the State Health Plan in spite of parity laws not applying.

The bill mentions DSM-5. Does this bill require that children diagnosed under DSM-IV (4) be re-diagnosed using DSM-5 criteria to receive the autism benefit?

The bill does not require re-diagnosis under DSM-5 criteria. DSM-5 changes to the insurance statutes reflect an update in the law. DSM-5 is now in effect, so the DSM-IV (4) language should not remain in the law. The DSM-5 specifically states that “individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder.” 

Does SB 676 cover Applied Behavior Analysis (ABA)?

YES. The definition of Adaptive Behavior Treatment includes Applied Behavior Analysis as well as other treatments for autism. By using the broad term and not naming only one treatment option, the bill allows for a range of behavioral and development interventions, including ABA, “that have been shown to be clinically effective.”

Does SB 676 allow ABA therapists (BCBAs) to provide ABA therapy in North Carolina and be reimbursed?

YES. ABA therapists (BCBAs) are already providing services in North Carolina and their services are being reimbursed. Even though they are not licensed, current law allows BCBAs to practice in NC as long as they are supervised. This bill does not change any ability to work. The House passed a behavior analyst licensure bill to license BCBAs to practice without supervision. That bill is currently in the Senate and is eligible to be passed this year or next year. Many organizations worked together to come up with the licensure bill, and although the Autism Society of North Carolina does not typically take a position on the licensing of professional groups, ASNC has endorsed the bill and will be working to pass it in the Senate.

Has there been opposition?

Unlike previous years, this bill is not opposed by insurers because we have worked with them to craft a compromise. SB 676 is the only insurance coverage bill that is not being opposed by the NC Chamber or other business associations that often oppose bills requiring new insurance coverage. 

What have neighboring states done on this issue?

While more than 40 states now have some requirements to cover autism in health plans, they differ greatly in the ages covered, the benefit limits, and the plans included.

  • Georgia requires insurers to provide up to $30,000 a year in coverage of ABA therapy for children 6 and under who have been diagnosed with autism.
  • Virginia requires large group plans in the fully funded market to cover up to $35,000 a year in coverage of ABA therapy for children 10 and under.
  • South Carolina requires large group plans in the fully funded market to cover ABA therapy up to $54,000 a year for children diagnosed before age 8, with coverage up to age 18.
  • Tennessee has not passed legislation.

A Closer Look at the NC House Budget

GA Front

This article was contributed by Jennifer Mahan, ASNC Director of Advocacy and Public Policy.

The NC House passed HB97, its version of the two-year budget, on May 22. The House budget would increase spending by $1.3 billion (6.3 percent) to address funding needs in Medicaid, education, and other services. The bill includes funds for increased teacher pay, student growth, some education initiatives, current Medicaid services, and new crisis services.

The Senate is expected to reveal its version of the budget this week, with fewer increases in funding to make changes to income and corporate tax rates. Then a House and Senate budget conference committee is usually appointed to work out differences between the budget bills.

Here are some details on the proposed House budget:


  • 2 percent pay increase for teachers
  • Student growth is funded
  • Special education per-pupil spending is increased in special provision language
  • Funds for technical assistance to increase capacity for postsecondary education for people with intellectual and developmental disabilities

The education special provisions include bill language from HB921 to begin addressing graduation and future employment of students with disabilities as well as to improve postsecondary education opportunities that promote employment and independent living.

Health and Human Services

  • Funds Medicaid rebase (growth in Medicaid eligible populations and current services)
  • Adds $2.3 million to the NC START crisis program that serves individuals with IDD so that it can serve children and youth.
  • Adds about $7.5 million (some recurring and some non-recurring) to develop more crisis services for MHDDSA populations including hospital beds, behavioral health crisis units, and a crisis bed registry.
  • Adds $2.1 million to fund a pilot project for Targeted Case Management for individuals on the waiting list for Innovations waiver services slots.

The special provision language in the Medicaid section would return more control to the NC Department of Health and Human Services (DHHS) to manage the Medicaid budget. Legislators stated that the language in this section will allow NC DHHS to shift funds as needed to support group homes that have been affected by changes to Medicaid policy on who qualifies for personal care and other services.


  • Funds the administration and promotion of ABLE Act 529 savings plans for people with disabilities.

What’s missing?

The House budget bill does not specifically fund the expansion of Innovations waiver slots to address the lengthy waiting list for IDD services. Also not included are any new funds to address the need for autism treatment under Medicaid Early and Periodic Screening, Diagnostic, and Treatment services. The $2.3 million in NC START funding in the House budget is enough to address the gap in adult IDD crisis but is not enough to address the needs of children and youth with IDD. Another $4-5 million would be needed to build effective child and youth crisis services.

ASNC will continue to advocate with the Senate to ensure that education and human services budgets address the growing needs of people with autism and other developmental disabilities.

Learn more

Information about the budget and the latest versions of the bill can be found in the left column of the General Assembly’s website at The “bill text” includes all of the bill language including the special provisions. The “committee report” is also called the money report and includes funding cuts, additions, and shifts in funding from one source to another as well as a brief description of each funding item.

Have questions about this legislation or other public policy issues? Contact Jennifer Mahan, ASNC Director of Advocacy and Public Policy, at or 919-865-5068.