History has shown us that housing people with disabilities in institutions has resulted in abuse, neglect and reinforcing stereotypical attitudes held by many in society. Countless examples of this can be found with little effort and research. For many years the disability community has advocated for the closure of institutions and a move toward community based living. Yet, as the final institutions across the country close I'm left wondering about those who aren't getting the level of care they truly need.

Several weeks ago I spent a week in Michigan visiting friends and family. Shortly after returning from that trip I noted learning of some significant challenges facing an individual receiving services from the mental health system in that state. I've waited to write this post for several reasons, most importantly to see how things progressed.

What has happened with this situation so far and what continues to go on should serve as an indictment on the current system in Michigan and hopefully will spur the same advocates who have fought justly to close 12 of 13 institutions in that state to fight with equal fervor to insure that the supports that enable people with disabilities to transition from these institutions are in place and that community living is safe and adequate.

Note that because of the confidential and sensitive nature of the situation that I do not have permission to name the identity of the persons involved here. However, I know the people and the situation quite well. For the sake of clarity and reference in this post we'll call her Jane. Jane has the mental capacity of a young child of five or six years of age but can, in certain situations, recognize opportunities to manipulate things. Also, I want to state unequivocally at the outset that I do not support institutionalizing people with disabilities. Rather, I support community based living in the least restrictive environment. And yet, in this case, the least restrictive environment is proving to be unsafe and dangerous.

This story actually begins in the 1980's with two parents who realized for a number of reasons that they could not provide care for this individual in their home. Jane's safety and that of the other family members were chief among their concerns. For these and other reasons the decision was made to attempt to arrange for the supports necessary to have Jane live in a group home that would still offer a level of independence and involvement in the community.

Over the next several months, maybe even a few years, the situation deteriorated. Jane began to run away, a problem that happened often toward the end of her time at home. Late one night Jane was found standing in the median of an interstate highway that was located near the group home in which she lived. She attempted to start fires on a number of instances. In fact, she was successful on one occasion when she broke in to a home-owners garage and started his truck on fire. This despite efforts to make it possible for her to remain at the group home. In the end the state failed to provide the level of support needed despite promises to do so and even assigning Jane a staff person on a one-on-one basis to provide supervision and support. There were alarms on the windows and other steps were taken to monitor her and yet none were successful.

Because of the difficulty in providing a safe and protective environment in the group home it was eventually decided that Jane would go to live at one of the state institutions in Michigan. She lived in facilities in Caro, Lapeer and, after these were slated for closure, she ended up at the Mt. Pleasant Center, the only remaining institution in the state. I am aware that there were instances when she was restrained for behavioral issues. I’m also certain that these facilities were not good places to live, both from accounts of life in institutions and because I visited on a number of instances myself. Click here and here for links to several articles and reports that present a number of situations and instances where violations were found and, in one case, a resident was found dead due to negligence on the part of staff.

Jane remained institutionalized for a number of years until she was moved back to the community and a group home late last winter as the state of Michigan attempted to reduce the numbers of people living at the center. This brings us to the present day challenges facing Jane and her family as they try to navigate a system where community living is both the goal and expectation. And yet the supports are not being provided that insure her safety and that of other people.

Jane has been living in a group home in Michigan for roughly six months now. In an effort to insure her safety and that she was receiving the care she needed, the state provided her with a one-on-one care giver in the home. This person is to be with her at all times. Further, the home is equipped with an alarm system so that if someone leaves the facility the staff should be aware of it. The belief was that this level of monitoring and support would offer Jane the opportunity to live in the community again and would mean one less person was living in an institution.

Things went well for a time but about three or four months ago the situation began to change. Most notably, Jane began to slip away from the individual who was assigned to her. She was able to walk away from the home undetected and to wander the streets for hours on end. This has happened approximately 15 times over the past few months. On one occasion she was out for over 18 hours, returned home for a few hours and then ran away again. She has been picked up by the police several times and caused concern among those who have encountered her on the street. On one instance she was picked-up and taken to a local psych hospital by ambulance, treated and returned to the home, only to run away again hours later.

Understandably, the situation is very difficult. The state, in transitioning Jane to community living and a less restrictive environment clearly has a responsibility to insure her safety and that of the broader community. The management at the group home says they are doing everything they possibly can to insure this. Yet they are clearly failing. Her family wants to insure her safety as well and, because of the state’s failure is unfortunately working to have Jane returned to the institution.

ARC Michigan, an advocacy group that has played a role in closing down state institutions has been targeting the Mt. Pleasant Center for roughly four years. According to their web site, the group's mission is to "assure that those with developmental disabilities are valued and that they and their families can participate fully in and contribute to the life of their community."

In an article for The Morning Sun published at the end of June 2008, Dohn Hoyle, Executive Director of Arc Michigan says that the facility is not safe and that parents have been tricked in to believing that the community is dangerous by staff and employees who don’t want to loose their jobs. In the article he also said that he believes all of the residents in the institution are capable of living outside of the institution if the right plan is put in place and that for every person living inside the facility a “disability twin” is living in the community.

I agree entirely with Hoyle’s assessment. With the right plan and its proper execution, everyone in that institution can live in a less restrictive environment. Yet, the issue boils down to a good plan and its execution. Jane’s situation clearly shows that the state is failing in this endeavor.

Depending on what happens next, Jane could wind up back in the institution. Michigan law requires that a petition be filed with the court by her guardian or someone who witnesses something of concern. My understanding is that this petition has or will shortly be filed with the intention of returning her to the Mt. Pleasant Center.

I’m left wondering where the advocates are who are pushing for the closure of this facility? Are you there to help people like Jane who aren’t succeeding outside of the institution? Obviously its going to be difficult to return her to the community once again in the future if this attempt fails. I also don’t believe that Jane’s situation is isolated. There likely are others who are struggling with the same issues and may also be working to return their son or daughter to institutional living.

Residents of the last remaining institutions can’t be forced out the front door without insuring the adequate supports are in place to insure their safety and well-being in the community. I’m certainly no expert in this area but it seemingly is quite possible that the remaining residents in these facilities might face the most significant challenges and thus they are the last to be leaving. Advocates must fight harder than ever to insure they escape from these facilities but also must fight equally as hard to insure that plans for providing the right supports are in place and being carried out by those responsible for doing so.