Sunday, June 6, 2010

Why PROS won‘t help people with schizophrenia

Those left out of the state programs will be the outcasts

PROS is “a comprehensive recovery oriented program for individuals with severe and persistent mental illness,” the NYS Office of Mental Health’s guidelines state. “The goal is to integrate treatment, support and rehabilitation in a manner that facilitates the individual’s recovery.” Yep, the state’s agents claim that people with serious mental illness like schizophrenia are going to recover. If you conceive of recovery as holding your own with a government paid income, government provided housing and government health insurance, plus regular visits to doctors and counselors, and perhaps some friends and family around to help support you, and a pretty strong constitution to begin with, then you’ll see recovery.

They used to say the odds were 50-50 for recovery of any kind from schizophrenia, but they’re better now with better medicine and the awakening of consciousness that people can improve. And there are far more community mental health services available plus some housing for the same kinds of patients who didn’t do well in the old days. This is after more than 50 years of emptying out the state hospitals and 45 years since passage of the Community Mental Health Centers Act under President Kennedy.

PROS is a newcomer, although other counties were pushed into it by the state three or four years ago as demonstrations. It’s now beating at the door of the Ellis Hospital-run programs here--the psychosocial club and continuing day treatment center, which are to be consolidated downtown and made smaller, and the outpatient mental health clinic, which is said to face restructuring. That may hit here by end of summer, when the Ellis clinicians will be ordered to take on broader roles such as providing benefits counseling and drug-addiction counseling. Conversion of local community mental health programs and retraining of staff is going on all over NYS, driven almost entirely by the state’s ability to access 50 percent federal dollars for PROS under a Medicaid waiver known as the Rehabilitation option.

Rehabilitation is synonymous with PROS and that makes it easier to understand. For the first time psychosocial clubs like Ellis’s Collage, vocational support programs, on-site rehabilitation programs like Pie in the Sky Bakery, run by RSS in Albany, and Intensive Psychiatric Rehabilitation Treatment (IPRT) programs like the one we had on Van Vranken Avenue till two years ago will be required to convert to PROS, while continuing day treatment programs have the option of doing so. Ellis claims it can’t afford to keep the CDT running and so is ready to cash in the chips and turn it into a PROS to receive a higher payment rate from the state. The social club is a state-paid Community Support Services program that can’t continue under CSS and so the hospital plans to shorten it into an afternoon program, also part of PROS. That much has been revealed already to parents and consumers of services at local meetings in the past month. Many of those at the clubhouse are infuriated and are rallying to keep it open, even asking Ellis management to cover the modest costs of running it.

There are many problems with the changeover. A main one is that the state isn’t being candid about what happens to those who don’t fit into the new programs. PROS has some tight regulations for attendance and performance of those in its four main service components, known as community rehabilitation, intensive rehabilitation, ongoing rehabilitation and clinic restructuring, the latter an option. You’d think they’d be more imaginative when naming three of these efforts, which seem mostly overlapping. The point is that the state has a responsibility to all the people with serious mental illness, just as PROS wants to deal with, plus those with lesser versions of illness, such as personality disorders and milder forms of anxiety and depression. It’s true some of those folks, particularly if they’re young and otherwise healthy, can be treated successfully and live relatively normal lives going to work and raising a family. We know some people who do well despite their illness.

But there is a large number of people who do indeed have severe illness, as I wrote recently to top members of the state Office of Mental Health. I said I believe they will either drop out voluntarily or be disqualified. The state envoys have expressed a low regard for the day treatment and social club programs that they say haven’t rehabilitated anyone. But I feel it’s the nature of serious mental illness that is behind the lack of their advancement and slowness to recover. That is, illnesses like schizophrenia are very severe for each of these people, over a lifetime, and the odds are that most will not fit into a rigorous rehabilitation model. Some will--and we want to give them a chance to work harder at their own self-improvement.

For the others, they need a secure place to live and interact with others in the community, and that’s what community support services has done for them. And they won’t be rushed or coerced into something more than that. We are glad they are not in a hospital or a nursing home. We are saving a great deal of money through the community mental health systems. These people have lots of physical ailments, some are elderly, many are overweight, some are too sick to show up for appointments regularly. How are they going to fit the PROS model? That’s why I urged the leaders to reconsider the rules they are forcing on us in Schenectady and Albany and all over the state.

The state OMH News even ran an article in July 2009 quoting Commissioner Michael Hogan and pointing out: “People with schizophrenia often do not receive treatment until the disease is already well-established, with recurrent episodes of psychosis resulting in costly multiple hospitalizations and disabilities that can last for decades. People with the illness are over-represented on disability rolls, and among the homeless and imprisoned. Their unemployment rate is more than 70 perecent, and the lifetime suicide rate for people with the disease is over 10 percent. People with schizophrenia occupy approximately 25 percent of the nation’s hosptial beds.”

Now I ask you, how are those folks going to keep their place in the classrooms and counseling sessions that are in store for them? One of the PROS on Long Island has even signed up its clients for two years of job-oriented lessons and planning, with state agents expecting them all to graduate into a job after two years. It’s fanciful.

The article does cite the fact that a number of research projects have signaled that early intervention--combining medical treatment with consumer and family education, and emphasizing a transition to a productive adult life--holds great promise in reducing the disability that is associated with schizophrenia. But that may be limited to some of our more privileged members. And if the programs have no place for the outcasts, those with the most disabling illnesses and behavior, what kind of a public mental health system is the state office running? A lot of people are going to be left out and who takes care of them? And what about all those programs the providers have set up over the years--affirmative businesses and clubhouses and IPRT and enclaves in industry,for example, that have proven successful and now are being dumped by NY State. It hurts to see the state office dismantle the best programs we have in Schenectady and Albany, that have worked well for so many. They arose out of the dreams of their leaders and took years to fully develop.

We’ve learned over a lifetime that as the services close, more of the tragedies and emergencies involving people with mental and behavioral disorders appear. There’s bound to be more homelessness, suicide attempts and emergency room cases, men hanging around downtown and police pickups. With the state breathing on their necks, the counties have pushed the providers of the “softer” programs like day treatment and social clubs to knuckle under and convert to PROS. They are willing to close what they have--good programs and bad, and they’ve simply taken the money. It’s sad to see it happen, both for the providers and the families and consumers who attend the programs. The most vulnerable will get left out. An awful reminder that what services we have can be so easily taken away. (Roy Neville)