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.

A closer look at the NC budget and its impact on the autism community

Photo credit to Mr. T in DC via

Photo credit to Mr. T in DC via

Every two years, the NC General Assembly passes legislation that sets a budget for the state over a two-year period, this year from July 1, 2013, to June 30, 2015. When the General Assembly returns in May 2014, legislators will make some adjustments to the budget, but they will not redo the entire bill.

The budget documents are in two parts:

  • the actual bill listing general funds appropriated to each department/area along with special provisions and policy changes that direct the use of the funds
  • the “money report” or conference report that provides some detail about funds that were added or removed from each department’s budget

Links to the budget documents can be found in the left column at Because the budget and the technical corrections bills were passed at the end of July, it may be several weeks before the technical corrections are merged into the final bill and the budget can be seen in its correct and complete form.

The Autism Society of North Carolina continues to advocate for increased access to quality services and supports, including for those on waiting lists and those who do not have access to health insurance or services through their health insurance. No new initiatives for people on the autism spectrum or with any developmental disabilities were funded in the new budget, nor were any additional Innovations (formerly CAP-IDD) funds added. The General Assembly did not authorize or fund an “i” option allowing for new basic level of services to be developed.

Appropriations bills

House Bill 5: Temporary Funding of Group Homes and Special Care Units: In the opening days of the 2013 session, the legislature passed a temporary funding bill for group homes (so-called “5600 DDA” group homes) for people with intellectual and developmental disability and mental illness.

Department of Health and Human Services (DHHS) Budget

  • Base Budget for the Division of Mental Health, Developmental Disabilities, and Substance Abuse Services (MHDDSAS): The division’s base budget allocation was funded in the final budget, which included restoration of the $20 million in nonrecurring cuts to state-appropriated services (IPRS funds). 
  • ASNC Nonprofit Funding for Direct Services: The budget provides for funding for not-for-profit organizations that provide service programs. As of this writing, ASNC retained 88% of its current funding. The budget also includes a special provision that will introduce a competitive grant-making procedure for funding that will begin in fiscal year 2014-2015. The timing of the grants and the allocation is critical, and we are monitoring the development of this new process by DHHS.  
  • Group Home Funding: $4.6 million one-time funding as temporary support to group homes whose residents lost personal care services under a restructuring of personal care services funded by Medicaid. This funding amount comes directly from DHHS and the Division of Medical Assistance. Also, a special provision directs DHHS to present a long-term fix for the personal care services needed in the 5600A and C group homes, including the possibility of a tier structure for special assistance payments. 
  • Developmental Disabilities Block Grant Funding (SSBG): This funding had been incorrectly eliminated during the current state budget and was restored at the beginning of the 2013 legislative session. MHDDSAS adult funding was set at $4,030,730 for each of the two fiscal years.
  • Guardianship Funding: Social Services block grant funding of $3,978,360 for fiscal year 2013-2014 and $3,978,360 for fiscal year 2014-2015. Based on our first review, it looks like this funding took a cut of slightly over 7% because of federal funding cuts.

Of continuing concern to ASNC are the cuts to Children’s Developmental Services Agencies (CDSAs) in North Carolina that could result in some closures of sites. Budget writers have been critical of state programs that did not use all of their funds in the current budget year. The CDSAs did not use some funds because of hiring freezes and difficulty in hiring because of pay differentials. More education of legislators is needed on the importance of early intervention services, the types of services that should be offered, and the reasons some funds go unused.

Child Development Centers Closing

The final budget agreement does reduce the state-funded appropriations to CDSAs by $8 million in nonrecurring funds for fiscal year 2013-2014 and by $10 million in recurring funds in fiscal year 2014-2015. Because of the cuts, the Department of Health and Human Services, Division of Public Health, may close up to four CDSAs, effective July 1, 2014. The bill instructs the department to retain the CDSA in Morganton and the CDSAs with the highest caseloads of children residing in rural and medically underserved areas. If the department elects to close one or more CDSAs pursuant to this section, it must submit a report to the Joint Legislative Oversight Committee on Health and Human Services and the Fiscal Research Division no later than March 1, 2014, identifying the CDSAs selected for closure.

Budget Special Provisions

The budget often contains policy changes in the “special provisions.”

  • Medicaid Reform Special Provision: The provision creates a Medicaid Reform Advisory Group – made up of five appointees – to advise DHHS in its creation of a proposal for “significant reforms” to the state’s Medicaid program. It authorizes DHHS to create a predictable and sustainable plan that increases administrative ease and efficiency of the system and also addresses the “whole person” by integrating physical and behavioral health care. DHHS may submit drafts of the plan to the federal government for feedback prior to the March 17, 2014, reporting deadline to the General Assembly, but it cannot submit any forms for implementation until the General Assembly approves the plan. 
  • Prior Authorization of Mental Health Medications: Early in the budget process, budget writers intended to create a prior authorization (PA) process for all mental health medications, such as those to treat anxiety, depression, and psychosis. These medications had been exempt from PA because data has shown PA can interfere with people accessing medications, resulting in higher costs for hospitalization and law enforcement. The budget technical corrections bill changed the PA language to focus only on medications for ADD and ADHD prescribed to juveniles because of high costs and concerns about misuse/misprescribing. Given the number of children with autism who are also diagnosed with a mental health disorder, ASNC will continue to monitor the implementation of PA.
  • The budget contains 215 cuts to teaching assistants and flexibility for Local Education Agencies (LEAs) in removing caps on class size. Some funds that had been removed from LEAs were returned. LEAs will have flexibility in how funding cuts are implemented at the local level.

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

NC legislature wraps up session

The General Assembly’s 2013 long session has come to a close. The House and Senate adjourned on Friday, July 26, and will not return to Raleigh – unless there is a veto – until the start of the short session on May 14, 2014.

As a rule, legislation that passed just one of the two chambers is still eligible for passage next year. Recommendations made by legislative study commissions and oversight committees that meet between now and the short session may be turned into legislation and introduced next year. The General Assembly passed a two-year budget for the state but will make adjustments to that budget during the short session next year.

Looking back on the session, the Autism Society of North Carolina, its lobbyists, and its grassroots partners were successful in discussing a variety of issues related to our legislative targets including education, health care, and civil rights for people on the autism spectrum and their families. We had a number of successes, but there is still much work to complete.

The final budget contained few cuts, but also no funds for new or expanded services. Current Medicaid services were funded with the addition of $750 million due to increases in people served and services used. Early intervention services were cut by $10 million. The budget allows the Department of Health and Human Services to plan reforms to create an integrated Medicaid managed care program across all services, but the agency must seek legislative approval before submitting any final plan to the federal government.

Autism Insurance – Halfway There!

The NC House passed a bill requiring autism insurance coverage in private and state employees’ health plans, but the Senate chose not to take up the bill this session. Funding for the cost to the state employees’ plan for autism treatment was included in the budget, but the bill still must pass the Senate to become law. The Senate may take up the bill in the 2014 short session.

Tax Credits Change to Scholarships

The tax reform bill repealed the children with disabilities education tax credit, but the legislature replaced it with a similar scholarship program that improves on the tax credit by removing limits based on tax liability and income. The legislature and the governor have verbally committed to studying vocational programs for students and adults with disabilities, despite a study bill not passing this session.

Voting Rights Changes:

The legislature passed sweeping changes to voting and elections late in the session, adding new policies in the final days of the session, some of which would have threatened the ability of people with guardianship to vote. A number of troubling provisions remain in the bill, but our advocacy helped to remove the most objectionable part on those under guardianship. The section was moved to a study committee.

Thank you for all of your grassroots work this session! Legislators hearing your stories and how proposed laws would impact you and your family makes a huge difference in our advocacy work. ASNC will be publishing several more blogs with detailed information about legislation. If you have questions about these or other public policy issues, please contact Jennifer Mahan, Director of Advocacy and Public Policy, at 919-865-5068 and