Today, the 15th Anniversary of Olmstead, the Atlanta Journal Constitution (AJC) has reminded us both how difficult and how vital Olmstead is. The newspaper reported on serious and tragic incidents that have occurred in transitioning men and women with developmental disabilities out of Georgia’s state hospitals as part of the Justice Department Olmstead settlement. Buried in the article is the story of Keith McGarrity, who lived most of his life in an institution (from 1963 to 2011), and who is now living a much more meaningful life in the community six miles down the road from his 84 year old father Alvin.
In issuing the Olmstead decision, Justice Ginsburg did not say that states had to immediately transition every person from an institution into the community. Instead, the Supreme Court allowed states to create effective working plans with reasonably paced moving waiting lists in order to accomplish the mandate of Olmstead. Unfortunately, what states did with this caveat was to have a lot of planning meetings, but they took very little action.
In Georgia in 2007, seven and a half years after the Olmstead decision, the state had done very little to comply with its Olmstead obligations. The AJC ran a series of articles entitled the “Hidden Shame” that showed over 100 people with disabilities in the state hospitals had died under suspicious circumstances. The Justice Department followed this up with an investigation of its own revealing multiple incidents of abuse and neglect.
As a result of the Justice Department investigation and subsequent litigation, Georgia finally, eleven years after Olmstead, agreed in October 2010 to begin transitioning people with developmental disabilities and mental illness into the community. This meant that work that should have started in 1999 to build an infrastructure of supports and opportunities for people in our state institutions finally began in early 2011.
Georgia has made remarkable progress (although it still has a long way to go) in providing supports and housing for people with mental illness across the state. It has the most innovative and successful housing vouchers in the country for people with severe and persistent mental illness. It has developed robust supports, case management, and crisis services. Georgia is a national leader in developing and training certified peer specialists so that people with their own experiences of mental illness who are further in their recovery journey can support others with mental illness. According to the Court’s Independent Monitor, Elizabeth Jones, “[t]he building blocks of a system oriented towards recovery are now visible and largely operational.”
Unfortunately, Georgia has had substantial difficulty transitioning people with developmental disabilities. The state, the Justice Department, and advocates have taken these difficulties extremely seriously. For most of the last twelve months, the state has stopped the transitions in order to build up and train its provider community. The Justice Department and the Court’s Independent Reviewer have required the state to come up with a detailed plan by the end of June 2014 (that should become public July 22nd) to map out how the state will successfully meet its obligations for people with developmental disabilities. This will not be easy, but it is vital to enable people like Keith to have the opportunity to live meaningful lives in the community like every other American.
Tomorrow, we will have a 15th Anniversary Event at the Carter Center. The event is led by and run by people with disabilities who care deeply and passionately about the promise of Olmstead. We will hear stories from people whose lives have been transformed due to Olmstead. Thousands of men and women across the country have the opportunity to live and work in the community as a result of the decision.
Yes, making Olmstead a reality is difficult and it must be done right, but it is vitally important!
Integration does not just mean getting out of an institution (unless that is all a person wants). Of course, getting out is essential, but, for lots of people, it will only be the beginning of full integration. Each person returning to the community must have reasonable opportunities to be interconnected into the community as he or she chooses.
People who have been in institutions for a long time have likely lost many of their connections to the community. It is typical for a person stuck in a nursing home to not have a motorized wheelchair, transportation, or any real way of getting out and about. The nursing home parking lot becomes an impregnable wall fencing the person into the nursing home. Friends and relatives may visit, but, for many, those visits diminish or even stop all together over time.
Thus, as we advocate for these men and women to get out of nursing homes and other institutions, we must ensure that, for those who want them, there are opportunities to reconnect to the community with accessible transportation, integrated housing, employment opportunities, and ways to be part of the faith and civic communities that they want to be part of.
2014 and 2015 are big anniversaries for the disability rights advocates. These anniversaries are opportunities to spread the word to people with disabilities, advocates, and the larger community of the rights people with disabilities have to live fully integrated lives in the community and the opportunity the community has to be enriched by being inclusive, inviting and accommodating. In 2014, we celebrate the 15th anniversary of Olmstead v. LC, the most important civil rights legal decision for people with disabilities. Then, in 2015, we celebrate the anniversary of the Americans with Disabilities Act (the ADA).
Already, the ADA Legacy Project has begun the process for celebrating the 25th anniversary of the ADA. It has created an outstanding website at ADALegacy.org. The mission of The ADA Legacy Project is to honor the contributions of people with disabilities and their allies by:
- preserving and promoting the history of the disability rights movement;
- celebrating the impact of the Americans with Disabilities Act (ADA), as well as other related disability rights legislation and accomplishments; and
- educating the public to create opportunities for inclusion, access, and equal rights for the future.
Please go to their website to learn about upcoming events and get excited for 2015, or don’t wait, go ahead and get involved now.
For the 15th Anniversary of Olmstead, a new website will be debuting this summer called OlmsteadRights.org. The website will tell Olmstead stories through narratives, audio recordings, and videos of people whose lives have been changed by Olmstead. We will also have a major celebration of the 15th Anniversary at the Carter Presidential Library on June 23, 2014 in Atlanta, Georgia. Go here to find out more about this great celebration. You can also follow the Olmstead anniversary celebration by liking I am Olmstead on Facebook.
I once had a client who was in a psychiatric hospital. We were getting her out of the hospital using Olmstead advocacy. As part of the transition, the social worker was required to do a person centered plan for my client.
In preparation for the meeting, my client and I had discussed what she wanted. She was very clear that she wanted three specific things when she got out of the hospital. She wanted me to tell the social worker what those three things were. I had encouraged her to say these things herself, but she did not trust the people at the meeting and felt strongly that I should raise these points as her attorney.
When the meeting started, I said to the social worker that my client wanted three things. The social worker became annoyed. She said, “please do not interrupt we have to fill out this person centered plan.” I said “but these are the three things that my client wants.” The social worker said, “excuse me, please do not interrupt, we have to fill out this form.”
I’ve been to many meetings like this. Often, there are forms to be filled out. The forms at their heart are good, but too often the forms become mere checklists for someone to fill out without actually taking account of the purposes and reasons for the documents.
This happens particularly at schools in IEP (individualized education planning) meetings, where teachers, school psychologists, and parents meet to discuss what a child with a disability needs for his or her education at school. There are many forms to be filled out at these meetings. In my experience, the meetings become a time where paperwork is filled out about a child in such a way that the child almost disappears in the morass of questions and answers that use big teaching words but that have little meaning.
In both person centered planning and IEPs (as well as Money Follows the Person and other transition meetings), it is essential to enable the person “being discussed” to have the power and voice to truly plan his or her own future. The first step in doing this is to give the person information and time before the meeting so he or she can prepare for the meeting. Second, at the meeting, there should not be any paperwork at the start. The start should be a conversation with the individual to hear what he or she wants, what he or she is concerned about, and what he or she needs. Third, there should be a conversation about the gifts and abilities of the individual. (These meetings focus way too much on the impairments/deficits of the individual). One of the main ways all of us grow is by building up our strengths and nurturing our gifts rather than focusing on our weaknesses or impairments.
Fortunately, when person centered planning is done not by people who have to do it because they have to fill out forms, but by loved ones, disability advocates and self advocates, and others who truly understand why and how to do person centered planning, it can be a powerful and wonderful, and even a life-changing, experience. As we move forward, we all need to capture the beauty and power of person centered planning and resist making such planning bureaucratic emptiness.
One of the realities of Olmstead advocacy is dealing with different agencies who pass the buck to each other. Olmstead is about providing accommodations to people with disabilities but when different agencies are involved they often put up obstacles or send the person with a disability on a chase to find who is responsible to provide necessary supports and services.
A Georgia woman who has two children with intellectual disabilities recently experienced this when her two children with intellectual disabilities received termination notices from their Medicaid Waiver program. The two children qualified for a Medicaid Waiver but were in a Medicaid Waiver for individuals with physical disabiliities. The agency terminated the children because they did not qualify for that Medicaid Waiver despite the fact that it had been providing the Waiver to them for years. It stated that it had to terminate them because the Center for Medicaid and Medicare Services required the termination since it was the wrong waiver. There is a Medicaid Waiver that the children qualify for but it is run by a different Georgia agency and has a 7000 person waiting list. Rather than assist the children to receive the other Waiver, the original agency just terminated the children. Fortunately, there is a lawyer involved and this matter may be resolved favorably. But this happens over and over again to people who may not have such representation.
Olmstead requires that agencies provide accommodations and assist families when issues arise rather than obstacles and roadblocks that leave families and individuals with disabilities in the cold.