This article also appears in the Winter 2023 issue of Spectrum.
When you have been advocating for a long time, it can feel like no progress is being made. When we see growing waiting lists and know that services for people with disabilities remain unstaffed, it is easy to lose hope. There is good news to share: there is now an option for Tailored Care Management for people with Medicaid. Medicaid is planning on rolling out new 1915(i) services for people with intellectual and or developmental disabilities (I/DD) under the Tailored Plans on April 1 (timeline subject to change), the North Carolina General Assembly (NCGA) and the North Carolina Department of Health and Human Services (NC DHHS) increased some Medicaid rates 5% to support Direct Support Professional (DSP) wages, and many DSPs also received bonuses in the last NCGA budget. We need to acknowledge when progress has been made and the advocacy effort that has gone into creating change over time, while still recognizing the unmet needs that exist and push ahead with making our voices heard.
Tailored Care Management
As part of Medicaid Transformation’s shift to more whole person care under the new Tailored Plans, 2022 saw the new option of independent care management for people with Medicaid in those plans. Tailored Plan participants can now choose from a growing number of options for care management, including Tailored Care Management agencies (CMA), local management entities (LME/MCOs), and in some cases, care management via advanced medical health homes. The Autism Society of North Carolina has advocated for choices in Medicaid care management since the 2011 managed care proposals and subsequent legislation which removed it from our services array.
1915(i) Services
Medicaid will be offering new services called 1915(i) services to people with I/DD, including autism, as well as those with mental health issues and substance use disorders beginning April 1 (timeline subject to federal approval and state rollout). 1915(i) services will eventually replace B3 services. Unlike B3, 1915(i) services are an entitlement. This means that the program does not run out of funds to help people and does not keep waiting lists (like the waiver). The same set of 1915(i) services will be offered across the state, unlike B3 which may be different from place to place.
These 1915(i) services include:
- Community Transition
- Respite
- Community Living and Support
- Supported Employment
- These and other services to support those with a primary diagnosis of mental illness or substance use disorders
You must be eligible for Medicaid, as well as be determined to be in need of these types of services, in order to get them. You can use 1915(i) services and remain on the waiting list for an Innovations waiver slot. These services will be available through your Local Management Entity/Managed Care Organization, through Medicaid Direct for those in pre-paid health insurance plans, and through the Specialized Family and Child (Foster Care) Plan when launched. ASNC has long advocated for North Carolina to adopt a set of “entitlement” services for people with I/DD to address long waits for Innovations waivers and to offer choices for community-based living. When Federal laws changed in 2010 to allow for 1915(i) options under Medicaid, ASNC began advocating with NC DHHS to create a set of state plan services to support people with I/DD.
2023-24 Policy Priorities
ASNC creates public policy priorities every two years based on feedback from our public policy survey; our work with individuals, families, professionals, coalition partners and policymakers; and our staff and Board of Directors. You won’t see many changes in our new policy priorities; the small gains made in additional community services are overwhelmed by rapid growth in our state – more people than ever want to be able to live, work, and recreate in their local communities and need viable options to do so. Our state’s growth has meant expanding needs in every area, from early intervention to school supports, from community-based services to affordable housing, from employment supports to the ability to age in place.
ASNC is focused on building on recent policy successes while pushing for increased direct support wages and career options; improving access to community services; and following the significant learning losses during the pandemic and the stresses on school systems, advocating for equitable school and special education funding. We are also kicking off an effort to modernize training in our
justice systems.
ASNC selected three focus areas for our policy priorities:
Focus Area 1: People with autism live in and contribute to their communities.
- Make meaningful progress in increasing investments in services to reduce or eliminate the 16,000-person waiting list and eliminate disparities between wait times in different counties.
- Ensure people with disabilities have staffing for services by paying direct support staff a sustainable wage, supporting the DSP career path, and increasing provider rates support these outcomes.
- North Carolina develops sustainable, supportive housing options for people on the autism spectrum.
Focus Area 2: People with autism have opportunities for growth and are not left behind their peers.
- Assure access to diagnostic assessments by increasing rates and directly funding low or no cost programs.
- Increase special education funding and remove funding disparities, including caps on local special education funds, to better support students in schools, expand teacher training/mentoring, and provide access to the same learning resources.
- Make sure adults on the spectrum do not “fall off a services cliff” after leaving high school: youth transition to employment opportunities, secondary education programs, and meaningful activities; adults have access to an array of services that work for them and their families.
- Close health care coverage gaps and assure access to affordable health care coverage.
Focus Area 3: People with autism are treated justly.
- End the use of seclusion and restraint in schools by implementing evidence-based alternatives.
- Modernize training on autism for law enforcement and require training for detention officers and other sheriffs’ personnel.
- Ensure NC’s guardianship program has stable funding, training for courts and families, and focuses on retention and/or restoration of rights when possible.
The one thing all our targets have in common is that they need you – your voice speaking up along with ours to make the needs of all our communities visible to our elected and appointed officials. This year, we hope you will make a commitment to writing to your state and federal elected officials to talk about your needs, those of your family, those of your community, and those of others on the autism spectrum. For tips on telling your story and ways to keep up with autism advocacy, please visit our Make Your Voice Heard page.
Tags: autism, autism health care, autism insurance, autism legislation, autism medicaid, Autism Society of North Carolina, legislation, public policy