Though Minnesotans rallied last month at the state capitol, honoring the completed transfer of people with developmental disabilities (DDs) out of state institutions and into the community, they celebrated too soon. The transfer is still incomplete. Five people with DDs currently live in Minnesota institutions-four at the Anoka Metro Regional Treatment Center (AMRTC) while one resides at Ah-Gwah-Ching, a nursing home for people with mental illness.

These five people are the subject of an official complaint written by the State of Minnesota Office of the Ombudsman for Mental Health and Mental Illness. On October 31, 2000, the Ombudsman’s office wrote the Office of Civil Rights (OCR) that “these individuals are being discriminated against on the basis of their developmental disability, a violation of their rights under the Americans with Disabilities Act (ADA)…to live in the most appropriate, integrated setting.”

The Ombudsman’s office also alleges that the AMRTC case violates provisions of the 1999 Supreme Court Olmstead Decision, which basically prohibits confinement of individuals solely on the basis of insufficient resources in the community. Olmstead requires states to make all reasonable modifications to avoid “discrimination on the basis of disability.” At the same time, the Decision does not mandate that states make changes which would drastically alter the fundamentals of their governing systems.

In the official notice, Roberta Opheim, Ombudsman, and Arlene Wegener, Client Advocate for the Ombudsman, raise several concerns regarding the continued residence of people with DD in state institutions. First, the support groups and programs available at the institutions focus primarily on people with mental illness (MI). Opheim insists that people with both a MI and DD may not benefit from these programs–developed for people who have a higher cognitive ability than those with mental retardation. Wegener adds that most of the programs at AMRTC are largely “self-directed” and depend on the patient’s initiative.

Secondly, Wegener indicates that the people sent to AMRTC for mental illness are usually referred there because they “had displayed aggressive or destructive behavior in the community.” The five people with DDs still in the institutions, she feels, are more vulnerable to harm by such behavior due to their cognitive abilities.

Another matter Opheim addresses relates to the length of stay at AMRTC. According to her, these are five “real people coming up on a year where after a month they’re stabilized and ready to go and now they can’t go. And to sit there for a year in an institution that you do not need to be in constricts their rights.”

The Ombudsman office maintains that their complaint is not specifically directed at AMRTC or DHS-the organization that operates both AMRTC and Ah-Gwah-Ching, and the organization that distributes Medicaid funding. Instead, it is a multi-system problem. Hospitals cannot afford to keep patients in their wings for the extended time it takes for a person’s MI to stabilize, so county courts refer these people to treatment centers such as Anoka. The courts commit people to AMRTC because they are unable to find a more appropriate place for them in the community. Law requires that Anoka accept all patients sent to them through the courts. Then, leaders of the county say they cannot return patients back into community living because, again, the appropriate place does not exist for these individuals. Plus, Opheim notes, the State is obligated to ensure that counties develop services in the community and that county social workers, family members and others who would assist in a person’s independent living are aware of such services. The solution and the aim of the OCR complaint, she says, is “to push all these systems to come together and ask ‘What do we have to develop to make this happen?'”

Elaine Timmer, Assistant Commissioner of State Operated Services for DHS stands by DHS and its actions to capably and appropriately manage these people with both MI and DD’s at the treatment centers. She responds to the Ombudsman complaint by defending the system’s efforts in treatment at Anoka and the measures taken to return these people to the community. “The treatment that they receive (at AMRTC) is active treatment for their mental illness. There’s a variety of treatment approaches such as psychiatric evaluations, medication, and assessments that are individualized for every single patient referred to the facility.”

Regarding Ombudsman concerns that the five patients were admitted as having mental illness when, in truth, they did not, and that treatment at the institutions is inappropriate for their cognitive abilities, she answers “These patients were appropriately referred to AMRTC by the courts. They receive appropriate treatment there, and plans are underway to give them an appropriate discharge.”

She continues, noting AMRTC’s committment to returning these people placed in the community: “We actually begin planning for (an AMRTC patient’s) discharge on the first day they arrive at the facility. We work with the county, family members and others to plan for that discharge.”

Timmer explains that the needs of these few people prevent them from a timely return to the community. She comments “the effort it takes in order to find…placement back in the community once their mental illness has been stabilized, is often difficult because of the complex needs of these clients. All of the clients that are there now have active discharge planning going on with them, which means that our staff is working with the county case managers to find and develop appropriate placements for them to return to the community. Sometimes because of the complex nature of the client, it takes some time to develop an appropriate setting for the client to be placed in the community.”

This is one point that both DHS and the Ombudsman agree on. Many of the community placements available to AMRTC do not meet the regional, supervisory, or service specifics that a patient with MI and DD may require. The two disagree on the multi-systematic efforts to create such resources in the community. Whereas Opheim wants to apply stress through the system via the official complaint, Timmer insists “I don’t think that it takes any more efforts than what’s happening right now.”

Regardless, five people with developmental disabilities and mental illness live in Minnesota state institutions against their own interest. As Arlene Wegener remembered from her visits with the patients at AMRTC, they repeatedly would ask her “When am I going to get out of here?” While the wheels are turning, are they in motion fast enough to return these people to the community and not violate their human rights?

The official complaint by the Office of the Ombudsman is currently being reviewed by the US Department of Health and Human Services (DHHS). They will inform the Ombudsman whether or not they will investigate the case. If DHHS does take the case, OCR could terminate or reassess funding for programs at AMRTC and other institutions. DHHS will respond to the Office of the Ombudsman in the next 15 days.