You may have heard that the NC Department of Health and Human Services has published an “Olmstead Plan.” In this article, we will address what “Olmstead” is, how it relates to services for people with disabilities, and what it means for behavioral health services in our state.
The story of the Olmstead case
Lois Curtis and Elaine Wilson were living in a state-operated facility in Georgia for people with mental health disabilities. However, they wanted to live in their home communities and get the services they needed there. The State of Georgia refused to give them a choice, so they sued, taking their case to the US Supreme Court. In 1999, the Supreme Court ruled that the State of Georgia had to offer these two women a different option than life in a facility. The Court said that it is disability discrimination to make someone live in a facility to get disability services. Under the Olmstead ruling, forced segregation of people with disabilities is illegal under the Americans with Disabilities Act (ADA).
Olmstead means choice instead of forced segregation
When people need services because of a disability, the Olmstead decision says that they have the right to choose community services. This does not mean that anyone must leave a facility or congregate care setting – it means that they should be able to live in the community if they want to. To have a real choice, community services must be as available as they are in facilities. Otherwise, it’s not a real choice. Olmstead means that we don’t have to accept being segregated in facilities in order to get help.
Segregation in North Carolina
We see segregation in a number of places in our behavioral health system in North Carolina.
- Hundreds of children are sent to Psychiatric Residential Treatment Facilities (PRTFs) instead of receiving services at home. This is traumatic and harmful, and there are many cases of abuse and neglect by these facilities.
- Thousands of people with age-related mental health disabilities who want to age in place by staying at home or a family member’s home, are forced to move into facilities because they cannot get services in the community.
- Thousands of people with intellectual and developmental disabilities live in state-run or privately-run facilities. Many times, these facilities are the only option available because they can be paid by Medicaid. The state limits Medicaid-funded services in the community, so they are largely unavailable.
- Thousands of people with mental health disabilities are homeless, or stuck in emergency rooms or psychiatric hospitals, or placed in adult care homes or other facilities, or are jailed or imprisoned for behaviors related to untreated mental health needs. In many cases, people are not receiving services for their mental health needs but are placed in a facility because there is a bed available.
- Thousands of people with Traumatic Brain Injury (TBI) aren’t getting the services they need, putting them at risk for institutionalization.
- Over a thousand people with disabilities work in segregated jobs called sheltered workshops, where they must work separate from people without disabilities, often for less than the minimum wage.
- Tens of thousands of disabled people in NC are isolated because they cannot get the services they need to be out in their communities. This includes people who are on waiting lists for services.
- Hundreds of children with high behavioral needs are removed from schools by long-term suspension instead of receiving an appropriate education, including behavioral health support, that meets their needs at school.
What if there are no community services?
The key to Olmstead is choice. In North Carolina, DHHS is responsible for making sure there are community services so that people have a choice. Our state uses Local Management Entities/Managed Care Organizations (LME/MCOs), which serves as gatekeepers for community services, to help with that work. The laws that apply to LME/MCOs, and the contracts they signed with DHHS, say that the LME/MCOs must ensure that there are enough available services and providers to meet the needs of the people in their region who need behavioral health services. They can do this by selecting the providers in their networks, developing or expanding the capacity of providers in their regions, and paying the rates necessary to bring in and keep providers to ensure that services are available.
A primary reason that people are forced to move into facilities is that there are not enough providers or staff available in the community. To be clear, in their contracts with DHHS, the LME/MCOs promise to make sure that there are enough services and providers, and they are paid a contract rate that is based on that promise. When you hear that there are not enough staff or providers, remember that this is someone’s job and that the situation can be fixed.
For example, if you cannot find a provider in the community, you may hear the excuse that Direct Support Professionals are hard to find because they are not paid enough. This is true for many types of providers. However, the LME/MCOs set the pay rates for Direct Support Professionals and others, so they can pay them more if they want to do that.
So, if there are no community providers, how does Olmstead help?
If someone is in a facility – or at risk of being placed in one – because of a lack of services or providers, that is a violation of Olmstead. That person is being forced into segregation; that is wrong, and someone must be held responsible. If this is happening to you or someone you love, please contact DRNC.
What is DRNC doing about this?
DRNC has been working on Olmstead issues since we became North Carolina’s protection and advocacy group in 2007. Here are some examples:
- We filed a complaint with the US Department of Justice about segregation of people with mental health disabilities in adult care homes. As a result, the US DOJ sued the State of North Carolina. The lawsuit ended in a settlement between the US DOJ and the state. This is sometimes called the DOJ settlement or TCLI program. The settlement is supposed to provide choices to people in facilities and will result in 3000 people with serious and persistent mental health disabilities being able to move into the community.
- DRNC has filed cases in federal court challenging unequal services in the community. Because of the outcomes of these cases, including Pashby v. Delia, specific services are now equally available in the community and in facilities.
- We filed the Samantha R case. This case challenges the failure of the state and DHHS to ensure that people with intellectual and developmental disabilities have the choice to live in the community instead of a facility. The case also addresses the growing waiting list for Innovations Waiver services. The Court ruled that the state and DHHS are violating the law, and it is considering the best way to fix the ongoing violation.
- We filed a series of complaints about children being at risk for entering institutions because there are not enough community-based services. These were filed with the Office of Civil Rights at the Department of Health and Human Services. They are still going on.
- Along with the Center for Public Representation, DRNC negotiated an agreement with DHHS to end segregated work over the next five years.
- We filed comments about the state’s proposed Olmstead plan, strongly urging changes that would make it meaningful.
What happens now?
DRNC believes that the Olmstead Plan that DHHS published will not fix our problems with segregation and the lack of choice. DRNC also believes the Olmstead Plan does not have enough details, timeframes, and measurable goals. These are core requirements that the US Department of Justice has said an Olmstead plan must contain:
An Olmstead plan is a public entity’s plan for implementing its obligation to provide individuals with disabilities opportunities to live, work, and be served in integrated settings. A comprehensive, effectively working plan must do more than provide vague assurances of future integrated options or describe the entity’s general history of increased funding for community services and decreased institutional populations. Instead, it must reflect an analysis of the extent to which the public entity is providing services in the most integrated setting and must contain concrete and reliable commitments to expand integrated opportunities. The plan must have specific and reasonable timeframes and measurable goals for which the public entity may be held accountable, and there must be funding to support the plan, which may come from reallocating existing service dollars…. To be effective, the plan must have demonstrated success in actually moving individuals to integrated settings in accordance with the plan.
The Plan published by DHHS is vague and does not explain a path from the current situation of forced segregation to a future of real choice. It does not have concrete and reliable commitments or set timelines for reducing segregation. It does not have the measurable goals needed to have accountability. It does not explain how change will be funded or whether existing funding will be reallocated.
While DHHS promises to update the Plan over time, it can still set goals now so that the community can hold DHHS accountable to something concrete. It can lay out a vision that will give people hope, instead of falling back on a listing of current programs that have already failed to be enough.
What happens now will depend on whether DHHS continues on the current path. We believe DHHS agrees that people must get community support instead of segregation, but so far it is not committing to real ways to reach that outcome. Until DHHS makes real change, people with disabilities, and their advocates, families, and providers, must keep fighting to make sure people can get supports in their community instead of being segregated. We are demanding that DHHS take action now!