The ACLU of Illinois and other advocacy organizations are representing individuals in nursing homes for people with mental illnesses in this groundbreaking litigation.
In August, 2005, we filed a case on behalf of people with psychiatric disabilities who live in large nursing homes, facilities defined by state and federal law as Institutions for Mental Diseases (IMDs). At that time, Illinois funded 24 of these IMDs, each housing between 50 and 400 people with various mental illnesses, in conditions that range from cold and institutional to filthy and dangerous. Experts in treatment and services for people with mental illness have condemned the practice of putting people in these institutions and say that the individuals housed in IMDs could be served far better for less cost in small, community-based settings or their own apartments. Unnecessarily segregating people with disabilities in institutional settings violates the Americans with Disabilities Act and the Rehabilitation Act. In September, 2010, the court approved a consent decree requiring the state over approximately six years to evaluate the needs of all of the people living in IMDs, a group that numbered about 4,000, and to offer them appropriate mental health services in the most integrated community-based setting that would meet their needs.
The court-appointed monitor has reported that more than 2,300 people have moved out of IMDs and into their own homes as of May 2019, and that the vast majority have said they feel their moves have improved their lives. We and the monitor, however, have expressed continuing concerns about the growing number of individuals who remain in the IMDs because they need services that the current community service agencies say they cannot provide. We and the monitor have asked both the state and provider agencies to develop a plan, and add new services, to reduce these numbers.
Additionally, by June 2016, the state was required under our Consent Decree to have in place a plan to offer everyone, prior to admission to an IMD, appropriate services provided in appropriate community based settings. At this time, the state does not have that alternative service system in place, but is expanding a pilot diversion project at hospitals across the state. Both of these continuing issues are addressed in detail in the Implementation Plan for FY20.
We will continue to monitor and assess the state’s efforts to remedy these two deficiencies until systems are in place which assure that no one will be needlessly required to live in an institution if they want to live in their own homes or other appropriate community settings.