In February of 2020 the State was found to be in violation of the Persons with Disabilities Protection Act and that people with disabilities in North Carolina were being unnecessarily institutionalized, or were at risk for being institutionalized, due to a lack of community-based options. The decision reinforced what people with disabilities, their families and advocates have known for decades: individuals often had no choice in where they would live except for institutional settings due to long waiting lists, inadequate staffing, and a lack of community-based services.
This past week, on November 2, the judge in this court case issued an order to the state of North Carolina to develop and implement a plan that would:
- Reduce the reliance on institutional settings, including state facilities and ICF-I/DDs.
- Eliminate the Innovations waiver waiting list over a period of ten years by reallocating funds, seeking additional funding, and developing alternative services.
- Address the direct support professional workforce crisis through credentialing and increased pay.
The plan ordered in the court decision would not require anyone to leave a setting they are currently in if they prefer to stay. It does require that people are offered alternatives to institutional settings: that they are offered the option to leave an institution or ICF-I/DD or are diverted from entering by ensuring they have an array of community-based services. The order sets a series of benchmarks for this plan and requires quarterly reporting on progress toward its goals.
It’s possible that the state of North Carolina will appeal the Samantha R decision, which could delay or change the judge’s order for addressing the lack of community-based services. North Carolina’s Department of Health and Human Services and the NC General Assembly do not need to wait for a final decision in this case to start working toward better services and ending the wait for the more than 16,000 on the list and the roughly 850 new individuals added every year. Recent changes include the NCGA appropriating funds to increase services rates and wages as well as adding 1000 waiver slots in the last budget. NC DHHS is adding new 1915i services to support people with disabilities who are Medicaid eligible.
The NCGA could fund what advocates have long said were needed including increased wages and a career path for DSPs; ensuring that those with complex needs have the integrated health, behavioral and community based supports they need; funding enough waiver slots to reduce the existing wait AND address population growth; and support programs that create access to health care and community supports for people with disabilities that are not Medicaid eligible.
Tags: ASNC, autism, autism advocacy, autism health care, autism insurance, autism legislation, autism medicaid, autism north carolina, autism society north carolina, Autism Spectrum Disorder, ncga, North Carolina General Assembly, public policy