Class Action Lawsuit: Community Integration for People with Disabilities

Table of Contents

Update

The DLC has agreed to a proposed settlement with the State to resolve this case. We will be accepting comments on the proposed settlement through August 16, 2019. You can find more information about the settlement in our class action notice found here:

Notice of Proposed Class Action Settlement Agreement

Overview of the Proposed Settlement

As we explain in the overview of the case below, we brought this case because many individuals living in ICFs wanted an opportunity to move into the community. The State’s system did not allow for many individuals to move. In fact, data indicated that the average was 7 per year, and some years no one was able to move to the community where they preferred to live. We brought this suit to ensure that those who wanted an opportunity to live in their community could do so.

Over the past year and a half, the DLC has worked with the Department of Health (DOH) and the Department of Human Services, including the Division of Services for People with Disabilities (DSPD), to resolve this case. We reached a tentative agreement at the end of 2018, but we needed legislative approval. There are some specific requirements in the proposed settlement, but we also believe the State is given a great deal of flexibility to make meaningful change to their system to comply with federal law.

Some of the requirements of the proposed settlement, DOH and DSPD will:

  • provide better education about community-based service options for those living in ICFs;
  • pursue a statutory change to prohibit new licensed private ICF beds in Utah;
  • develop better policies and procedures to serve the unique needs of individuals under 22 in ICFs;
  • seek to move 250 individuals who express an interest into community-based services; and
  • reduce the number of licensed private ICF beds to 465.

The DLC’s Efforts to Implement the Proposed Settlement

During the 2019 Legislative Session, the DLC worked very hard, along with DOH and DSPD, to get approval and funding for the settlement. There were four specific funding requests: (1) funding to move a portion of the 250 individuals from their ICF to the community, (2) a limited supports waiver that would allow more individuals to receive services in their community to help prevent institutionalization, (3) increased funding for ICFs if they made quality improvements so that individuals who choose to remain in ICFs live a better, more comfortable life, and (4) nursing services for those in the community to help ensure individuals in the community could have their needs met.

While these funding requests were not specifically detailed in the proposed settlement, the DLC maintains that all four of these requests are critical to comply with the settlement. We advocated vigorously for each and every piece of these requests during the session, and we will continue to push for all of these requests in future years, as we continue to believe they are critical to the settlement’s success.

Common Questions about the Proposed Settlement

Will I or my loved one be required to leave my ICF?

No, no one will be forced to leave. Our settlement requires the State to move 250 people from ICFs over the next five years (an additional 49, approximately, were moved in the year prior). However, those individuals must express their desire to leave an ICF, so no one will be required to leave if they don’t want to. And, people can change their mind. While we believe more than 300 will want to live in the community, if the State is unable to find 250 individuals who want to leave, the DLC will work with them to determine how to proceed under the settlement.

Does the proposed settlement require my ICF to close?

No, the settlement does not require any specific ICF to close. There is a provision that requires the closure of many ICF beds over the next five years in an effort to reduce the State’s reliance on institutional care, as required by Title II of the Americans with Disabilities Act (ADA). However, as with many of the provisions of the proposed settlement, the DLC gave the State a great deal of flexibility in how to accomplish that. These bed closures can be spread across the system, and, with the ICF incentive improvements funding the DLC continues to advocate for, we believe they can remain open for those who wish to stay. And we believe their lives will be improved by smaller facilities with more privacy and comfort.

With the prohibition on new beds and closure of beds, won’t it be harder for people to access ICF services?

The State has an obligation under Title II of the ADA to avoid unnecessary segregation of people in institutions, as indicated by the Supreme Court in Olmstead v. L.C. We found that the State had allowed this population to grow, and had not provided an opportunity for individuals who wanted to leave to do so. Our proposed settlement contemplates many things. We recognize that some individuals will want to stay, which is why only individuals who express an interest in the community will be moved (and they can change their mind at any time). However, we know that many individuals do not want to enter an ICF, but are forced to when it becomes their only option. That is why the proposed settlement asks the State to find ways to divert those individuals, which was the limited supports waiver we advocated for. With a successful transition of those who want to leave and a diversion of those who do not wish to enter, there will be an opportunity for those who wish to stay to do so and for those who wish to enter to do so.

A copy of the full settlement can be viewed here: Proposed Settlement.

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.

FAQs

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

Media Releases and Fact Sheets

Media Coverage

Additional Resources

  1. Ada.gov
    1. Basic overview of Olmstead decision
    2. Link to Faces of Olmstead project
  2. Olmstead Rights
    1. Blog
    2. 5 Minute Podcasts
    3. Basic overview of case law
    4. I Am Olmstead: Stories and videos
  3. Kaiser Family Foundation
    1. Olmstead’s Role in Community Integration for People with Disabilities Under Medicaid
    2. Olmstead plaintiffs 5 years later (Video)
    3. Faces of Medicaid services highlights some people who access community services

 

Citations

[i]

[ii]

[iii]

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