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NASMHPD/NTAC e-Report on Recovery – Fall 2004

5) From your interactions with the public mental health system workforce, is there more hope for recovery from mental illness today than there was ten years ago?

Deegan: I’d like to take a longer look back. As you know there are seven longitudinal studies in modern times that show recovery rates of one-half to two-thirds of people diagnosed with schizophrenia and other major mental disorders go on to significant or full recovery. Those studies span from the 1940s to the 1990s. But, there was a longitudinal study done at Worcester State Hospital in Massachusetts that was started in 1881. They looked at 211 patients who had been discharged as recovered between 1833-1840. The superintendent [in 1881] found that 51% of those discharged as recovered had remained well for as long as they lived. Between 1881-1893, the hospital sent letters to families of those who had been discharged from the hospital, and they looked at a total of 984 people discharged, and they found that 568 people remained well for the rest of their lives, or for as many as 40 years after discharge. They found that recovery rates between 1840-1893 were 58%. I know the danger of making a comparison between unmatched samples. However, the homogeneity of these rates with today’s studies is striking. What can this homogeneity of data mean? Some might say it says something about the treatment, yet, the treatment has changed dramatically and recovery rates are about the same. When we are talking about recovery, we need to start thinking about recovery as a type of resilience, a drive to wellness, a self-righting capacity, a resourcefulness that people who were historically seen as vulnerable and afflicted can somehow bring to bear on their own recovery. This begins to change the human services landscape. Currently, we live in a time of unique opportunity. We have at the federal judiciary level the Olmstead Act in 1999, saying it is a form of illegal segregation to keep people in institutions longer than they need to be there. We have the legislature—the Americans with Disabilities Act—saying that people have the right to accessible voting, transportation, communication, mobility, and equal opportunity to work. Now we have the executive branch with the President’s New Freedom Commission. So we have these three major things converging and it opens a unique window of opportunity. The grave danger of this time is - are we going to look at transformation as a matter of rearranging the chairs on the deck of the Titanic? Change is no guarantee of progress. If there is going to be one thing that each state does to bring about real mental health system transformation, let’s get at least one demonstration project of self-directed care up and running in each of the states and territories.    

Jensen: The short answer is absolutely and absolutely not. The first part of my answer is absolutely. There are individuals with life experience who are hired by everyone from the federal government to local agencies, and they are hired to do peer services, organizational change, education on recovery, and this is where change happens on the front lines. For most individuals doing this sort of work, such as a development specialist, or consumer specialist, this is isolated work. Even though I have my professional license and I have had my license for 25 years, I am no longer a nurse as a disclosed person. As a disclosed person, I am not necessarily a part of the staff from the point of view of everyone on the staff who is non-disclosed or a non-consumer. But, on the other hand, I am someone who does not have the court of peers, because I am a provider. It’s like I’m on an island in the river, with the river going by on both sides.

NASMHPD/NTAC e-Report on Recovery – Fall 2004

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