Overview of the case
In 1999 the US Supreme Court decided Olmstead v. L.C. and found that unnecessary segregation, isolation and institutionalization of people with disabilities is discrimination and against the law.
Today in Utah, people with intellectual and developmental disabilities (ID/DD) have two options when they apply for services: receiving them in an Intermediate Care Facility (ICF) or in their homes and communities. Utah offers immediate placement in ICFs, but applicants must wait for years on a list for home and community based services (otherwise known as HCBS, waiver or DSPD services). For those individuals who must receive services immediately because they cannot remain on a waiting list for years, private ICFs are the only option. Once a person is living in a private ICF, he or she effectively does not have the option to leave the ICF and receive services in the community.
An individual residing in an ICF lives a life segregated from the larger community. ICF residents live in small, crowded buildings with 2-4 individuals packed into a room. Residents have little privacy, their schedules are highly regimented, and they have very few opportunities to interact with the larger community.
Utah is violating the law by not giving people with disabilities living in private ICFs real choices to live in the community. The state of Utah has had 18 years since the Olmstead decision to fix this problem. The DLC is bringing this lawsuit now because people with disabilities have a right to be provided with services in the most integrated setting.
Who is affected
Our lawsuit will include people with intellectual and developmental disabilities who are institutionalized in private ICFs. This lawsuit does not include people living in the Utah State Developmental Center, a public ICF. There are 600 Utahns with ID/DD who currently live in private ICFs. Many residents express a desire to leave private ICFs and live and work in the community. We believe that many more would choose to do so if they were provided adequate information about community based services.
Why it matters
There are people in Utah who want to live in and be a part of the community, but instead spend their lives segregated in institutions away from family and friends. These people are deprived of the choice to live in the community, and we as Utahns are deprived of a community inclusive of people of all abilities. The Disability Law Center believes that the people with disabilities have a civil right to choose where they live and to not be isolated from the community.
What we hope to achieve
We want people with disabilities in Utah to have more choices for where and how they receive services. We want people with disabilities to be able to live in the community with the support and care they need.
We do not want to close ICFs or force anyone to leave an ICF. However, as people choose to live in the community, the number of beds in ICFs may go down and some ICFs may close.
What you can do
Please support us in creating a more just and integrated society for people with disabilities.
Donate: Help fund our work by donating. Checks can be address to “Disability Law Center” and may be mailed to:
Disability Law Center
c/o Adina Zahradnikova
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Salt Lake City, UT 84103
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Can people who leave institutions get the support they need living in the community instead?
Yes. Multiple national research studies have shown that people who were once institutionalized experience significant benefits once they live in the community. These benefits include: better adaptive behavior, better daily living skills, more independence, and more opportunity to participate in community life. Research shows that people with disabilities feel better when they move to the community,and that even family members who were reluctant to have their loved one with a disability in in the community are almost always satisfied with the results of the move to the community. i
Are people with significant medical needs at higher risk if they live in the community?
No. National research studies have shown no significant differences between mortality rates for people moved from institutions to community settings to people with similar needs who stayed in institutions. ii
Won’t it cost more to move people to the community?
No. In fact, national research has shown that investing more in home and community based services is more efficient because it frees up money that is currently being used to maintain institutions. In fact, states with robust, well-developed community supports save money over those with limited community resources. iii
How will this lawsuit affect people with disabilities who don’t live in ICFs? Will the lawsuit only help people in ICFs?
No. Anyone who is currently on the waiting list for services and or who is not yet on the waiting list is at risk of having to enter an ICF. Furthermore, ensuring that people with disabilities who reside in ICFs have real opportunities to live in the community does not change the State’s obligation to all people with disabilities who are receiving or waiting for services. Under Olmstead, The State is legally required to provide a comprehensive, effectively working plan for placing people with disabilities in less restrictive settings and a waiting list that moves at a reasonable pace not controlled by the state’s efforts to keep institutions fully populated.
TIMELINE, LETTERS, AND COURT DOCUMENTS
December 19, 2016: DLC seeks collaborative solution with State of Utah:DLC sends a letter to Governor Gary Herbert, UHS Director Ann Williamson and DOH Director Joe Miner requesting a collaborative effort to address this systemic problem by ensuring all eligible individuals who wish to live in the community have the choice to do so.
December 20, 2016: State denies its services violate Olmstead, agrees to talk about potential service improvements: DLC receives response from Director Williamson saying the State has made a deliberate decision to not adopt an Olmstead plan and believes it is fully in compliance with the ADA and Olmstead. Wants to enter into discussions with the DLC to “explore ways to improve our services within the framework of our available resources and our other needs.”
February 9, 2017 and May 8, 2017 : DLC meetings with State fail to bring about a resolution to unnecessary institutionalization of people with disabilities in ICFs:DLC meets with state representatives on 2 occasions. The State holds stakeholder meetings to discuss the transition program and living conditions in ICFs. Stakeholder meetings are held on June 29, 2017, August 25, 2017 and January 11, 2016. State representatives fail to develop an effective comprehensive plan for identifying and transitioning individuals with ID/DD from ICFs into the community.
January 12, 2018: Class action lawsuit filed in federal court:Plaintiffs file class action lawsuit in federal court alleging that the State is causing them to be unnecessarily institutionalized because defendants do not have an adequate system for ensuring Plaintiffs and similarly situated persons receive necessary services in the most integrated setting appropriate to their needs. View Filed Complaint Here.
MEDIA RELEASES AND FACT SHEETS
This intellectually disabled Utah woman wants to date, work more and go to college. But the state makes it impossible to leave her ‘crowded, noisy and isolated’ institution, lawyers say. (Salt Lake Tribune)
- Olmstead’s Role in Community Integration for People with Disabilites Under Medicaid
- Olmstead plaintiffs 5 years later (Video)
- Faces of Medicaid services highlights some people who access community services