ASNC Helping to Shape Medicaid Reform to Better Support People with Autism

Medicaid Diversion

Update: This week, officials at DHHS released their proposal for changes to the Medicaid system in North Carolina. The reforms would focus on creating Accountable Care Organizations (ACOs) to cover pyshical health services that would receive a share of savings by providing better quality care and controlling costs. Specialty services to people with developmental disabilities would be not be part of the ACO system, but would continue to be managed by LME/MCOs as they are now. Under this proposal, LME/MCOs would consolidate from the current 10 to four regional entities and would have new benchmarks for quality outcomes. You can read the NC DHHS proposal here and The News & Observer story about the proposed changes here. The legislature still must approve any changes to Medicaid before they would move forward.

The Partnership for a Healthy North Carolina

Following his election, Governor Pat McCrory announced his intent to reform the current Medicaid system to bring about stable use of funds as well as integrate services for physical health, acute care, mental health care, and long-term care. Called the “Partnership for a Healthy North Carolina,” the original proposal would have sought approval from the federal government for a comprehensive 1115 demonstration waiver dividing the state’s population into three or four large regions. The proposal would also put management of Medicaid health and disability services out for bid to private, for-profit and nonprofit health management companies. Concerned that the process was moving very quickly and that North Carolina had just recently reformed its MHDDSA system, the legislature created a five-person Medicaid Reform Advisory Committee to review information about possible managed care changes to Medicaid and make their own recommendations.

Monitoring the reform committee

The Autism Society of North Carolina has been monitoring the activities of the Medicaid Reform Advisory Committee and meeting with its members, as well as the McCrory administration, to discuss the needs of people with Autism Spectrum Disorder. The committee has met twice and reviewed some information on the current Medicaid program and some proposals about dividing the state’s population into regions based on population and the use of existing health-care services. The committee has also heard from members of the public regarding their ideas and concerns. You can read more about their activities and information presented to them on the Partnership website.

While autism has not been discussed specifically, members have brought up long-term care issues, and family advocates have expressed their concerns that reform does not lose sight of the need for long-term supportive services as well as early intervention for people with developmental and intellectual disabilities.

What you can do

The Reform Committee has heard mainly from provider groups and managed care companies. They would like to hear from more families and individuals receiving Medicaid services. Please consider writing to the committee at with your views. Some topics you might include:

  • Which services or supports are missing from Medicaid, and how they might help you or your family member
  • Which services or supports have been helping
  • What would you like for the committee to understand about autism and you or your family member?

Managed care forum

ASNC also participated in the Medicaid Managed Long-Term Services and Supports for People with Disabilities Symposium held September 12 by the Council on Developmental Disabilities of North Carolina. The symposium was attended by family members, providers, and policy makers on managed care and developmental disabilities. Participants heard from national speakers and had a facilitated discussion on current managed care efforts and the principles on which good managed care should be based. Discussion centered on the following topics:

  • The use of data and outcomes to manage the system
  • The need for individuals and families to shape the system and the services that are offered
  • The need for services to be individualized
  • The importance of independent case management to make sure people get what they need

Additional resources on managed care can be found on the council’s policy change site.

Need for case management

The current system does not use case management to assist people with disabilities and families. Care coordination is done by Local Management Entities (LME) staff, and while it is an important part of managed care, its intent is to oversee populations and set broad goals for people getting services, not to assist with individual needs. The managed care system for intellectual and/or developmental disabilities (I/DD), also has Community Guide, a time limited service that is intended to help during times of crisis or transition. Community Guide pays a monthly case rate that covers a few hours of support in locating and connecting to community resources, helping with school or provider problems, and empowering family members to advocate for themselves.  Not every individual with a disability receives care coordination or Community Guide, yet many individuals and families struggle to understand how the system works, what services should be used, where to find resources, and how to manage day-to-day difficulties. Case management is intended to bridge that gap.

Current trends in NC managed care

The Partnership for a Healthy North Carolina is likely to undergo a lot of change from the original proposal. Legislators and stakeholders are very interested in retaining the expertise of our current Community Care of North Carolina network, which has been focusing on Medicaid medical homes and preventative care activities; retaining the expertise of LME/ Managed Care Organizations (MCOs) while consolidating regions/counties into four large LME/MCOs; piloting Accountable Care Organizations (ACOs) that support things such as “shared savings” for health-care organizations that find efficiencies in the use of Medicaid funds; and other provider- based management of Medicaid funds. ACOs vary greatly from state to state and from provider to provider, so North Carolina has a lot of options to choose from in structuring these kinds of Medicaid reforms.

Uncertain future

North Carolina has been looking carefully at the results of other states. Most states have moved slowly on implementing managed care for long-term disability services such as those used by people with I/DD. Some states are just starting to implement new waivers that use managed care for I/DD, while others have dropped the use of managed care. Some states, such as Arizona, are using a hybrid mix of managed care for services but case management oversight of individuals done by the state or independent agencies. NC Department of Health and Human Services officials have said they will present a proposal for Medicaid reform to the legislature the week of March 16. The Medicaid Reform Committee will meet again on Wednesday, February 26, at the State Archives Building Auditorium. ASNC will continue to follow its work and the recommendations made by NC DHHS and the legislature. Stay tuned for more on this topic!

Medicaid reform background

During the past decade, North Carolina has made changes to its health-care and disability services system, including Medicaid. Among the changes is a shift from statewide management of a fee-for-service-based system to a regional managed care system. LMEs that were responsible for administering, and in some cases delivering, services for people with intellectual and developmental disabilities have become MCOs.

At its most basic, funding from state and federal sources, including funds that would be used for institutional and hospital care, are pooled together and the management entity is paid a per member per month (PMPM) rate to deliver services and supports. The incentive is to keep people “well” and out of more expensive care, because those funds are retained and can be used to expand available services. Individuals with intellectual and/or developmental disabilities, including Autism Spectrum Disorder, have lifelong conditions that need quality habilitative services and supports that build and maintain skills needed for maximum independence. This is different from people with mental illness and addiction in a “recovery model” focused on prevention and intervention to promote recovery. People with autism and I/DD do not recover; they gain and maintain skills though habilitative supports.

Under managed care, some services such as case management have been eliminated, and other services have been changed or reduced. LME/MCOs have the flexibility to choose which providers operate in their network and which types and amounts of services they offer to individuals (within the existing Medicaid plan approved by the state and federal governments). North Carolina’s governor has proposed integrating the current Medicaid physical health, mental health, disability, and long-term care systems into a single Medicaid managed care structure covering all funds and services.

ASNC supports principles for Medicaid and managed care that include:

  • Stakeholder involvement in any changes, especially families and individuals who are served by the system.
  • Making independent case management available for people with I/DD and other disabilities or chronic health problems.
  • The availability of a wide array of services and supports that suit the unique needs of individuals, including specialty services focused on autism, available across the state.
  • The elimination of the current practice of people waiting years for services.
  • Objective benchmarks for quality services, supports, and administration.
  • A focus on both early intervention as well as long-term supports, both of which are needed for reducing the impact of autism and for supporting people across the lifespan.
  • Evidence-based models of resource allocation and adequate payment rates for high quality services.
  • Creating a seamless system for health and disability services that is easy to navigate.

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


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