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Family and consumer representatives John Allen and Tom O'Clair of the NY State Office of Mental Health published a survey rating the counties by how many constituents sat on county community services boards and mental health subcommittees. The idea was to stir up interest, should the county be failing its responsibilities. The way they did it, compiling a staggering table of meaningless data, drew the remarks below.
John Allen andTom O'Clair:
I really don't see any meaning in the table you have sent out to the NAMI organization and its affiliates. Someone at OMH has spent a lot of time putting this together at a time when community mental health services budgets are stretched thin and there has been no growth in services to keep up with the population changes and to see that needed jobs are done by provider agencies. The county offices of community services are understaffed, positions are missing and go unfilled and county political leadership does not promote a vigorous attitude for mental health.
This fact gathering is a misrepresentation about the participation level of families and recipients as well as provider personnel. It has inaccurate data about their participation, about the numbers of meetings and frequency. The county by county scores at the end of the table are laughable attempts to show one county does better than another when the grades have no basis.
There is in fact, very little participation by families and recipients on these county boards and committees. In Schenectady I'm sorry to see things on the downgrade with fewer family members attending, almost no consumers, and almost no directors of agencies. This is a high scoring county in your estimation. Instead, there is low morale, even disinterest, I believe, because mental health budgets are kept low and the Office of Community Services can't staff up promptly. Meetings are infrequent and poorly attended by providers.
I'll tell you what's wrong here, besides wasting taxpayer money on such mind numbing number checking. The OMH has abdicated its responsibility to see that the county community services boards and mental health subcommittees act according to law and regulation. These offices are weak and unorganized. The meetings are held infrequently and not on regular schedules, often being cancelled. These are not formal meetings. there are no minutes kept, no votes taken, no agenda published. No attendance is taken, no written record of continuity as to what was planned and what was accomplished. So a citizen cannot tell what the community services board or its mental health committee does nor what it has done over the years to show for its meetings.
For that matter, most of the parents I meet with in family support groups over here wouldnt know there are such boards and committees and if they do, they do not show interest in joining them when we publicize them. Here's what I want to say. The parents are far more interested in the immediate problems facing them and their adult children with mental disorders. they crave more counseling, advice, talking out their situations, which keep changing, particularly when someone is losing touch and uncontrolled with their illness, getting in trouble with the law, lacking housing, needing medicine, looking for social security and medicaid benefits, trying to work free the bureaucracy and waiting lists to get what they need.
I know both of you are trying to help with those things. And we in NAMI and the hospital support groups go over it again and again. But these necessities are never ending. New parents come along with the same problems and need a helping hand all along the way, the kind of support we need from both of you, as well.
What's wrong is that these citizen boards are set up to see there is leadership at county level with citizens invited on them to see that the private agencies in mental health are doing what they're supposed to and they're properly funded. Without the exposure the agencies don't have to do as good a job or they're far less visible. That's why I write. People in need are being left out. A few years ago mental health subcommittee meetings were attended by many more agencies--in housing and homeless services, family and child, mental health clinic and hospital inpatient, crisis-emergency, Catholic Charities, City Mission, YMCA--as well as families and consumers. I can remember healthy debates about where our county was going and what was missing and should be addressed in mental health. People looked to the county agency to step up and lead. It's not happening now. You can't help feel the difference from a few years ago. (Roy Neville)
Wednesday, October 21, 2009
Do we need more screening of patients or more treatment?
The NY State Office of Mental Health has a gaudy document--a new set of guidelines for mental health clinic standards of care that is sure to impact on the mental health clinics up here. It's borne out of a planning document undertaken by a NYC team in 2008 meant to improve services to people with mental illnesses who are at risk for poor outcomes or violence. And that document came about after the woman died in the mental health unit of a Brooklyn hospital and episodes of violence seemed to engulf the city that year.
The OMH is taking up the new standards as part of its renewed licensing process. The idea is to help it decide if a clinic has high standards of care, just adequate ones or ones needing improvement, and if it's the latter, to push the clinics in the higher direction. That's all right but they put too much attention on testing and not enough on treatment, in my opinion.
To the OMH Office of Quality Management:
I have a response to the draft Clinic Standards of Care that you have put out for comment. What is being proposed that is new? Don't we do these things now, that is, question patients during an evaluation about mental health history, drug use, violent and suicide ideation, general physical health? If any of these are missing it's obvious the clinic should get its act together. But to propose a horde of extra features for clinics to follow in the column marked "exemplary" and insist these are the ones recommended for all seems extravagant.
It suggests that you've added sophisticated test batteries, the sort run by psychological testing companies and specialists and you've put more emphasis on quality control. While helpful I doubt if they are essential to the good working of a publicly subsidized mental health clinic. I think they are too costly to justify.
To my mind the real problems to be tackled lie in treating the assortment of people with complicated mental and physical conditions who come to the clinic nowadays. Particularly, those whose problems are largely sociological--stemming from their environment. Now, assessment is coupled with treatment. But it's only part of it and you can't have a treatment clinic that only does assessment. The clinic has to identify the most seriously mentally ill and sort them out from behavior problems like "problems of living"and those who come from stressful situations such as living in poverty, or homelessness or who are drug addicted, or sexually deviant, for instance.
I don't think the screening tests get at these kinds of people. Their main problems are simply outside the standard questions. For example, sexual offenders--what are the treatment options for them? Elderly people with dementia and/or serious mental illness require health care, housing and supports outside the mental health system; large numbers of teenagers and young adults have drug addiction and unsocialized behavior coupled with mental disturbance, coming from conditions in which they grow up; men and women coming out of jail and prison need to be reintegrated into society; people who don't speak English, and are among legal and illegal immigrant populations need all kinds of help, as do those with overlapping mental health and developmental and physical disability, and the people in outlying rural areas who can't easily access health care.
As I understand, more and more people are showing up with variations of mental illnesses and physical disorders which can't easily be separated out at a single evaluation. Yet each disorder needs to be treated in its own right. So the patients are presenting with more complications than formerly. And the screening tools won't make their treatment any easier, will it?
So I suggest instead of promoting more elaborate testing schemes for patients entering the system (while it's important to do evaluations right), what is needed more is for the state Office of Mental Health to add high quality staff to the clinics. We need better trained and better paid people working there, to do more than just offer talk therapy. The staff have to become more expert on benefits and entitlements like SSI and Medicaid; in how to place people in jobs, in housing and support services; how to help them find meals and food pantries, overnight shelter, where to get food stamps and cash assistance, child care, bus passes, an affordable lawyer, for example. That's what's missing now. And it's what gets them through a crisis or with confidence to face another day. (Roy Neville)
The OMH is taking up the new standards as part of its renewed licensing process. The idea is to help it decide if a clinic has high standards of care, just adequate ones or ones needing improvement, and if it's the latter, to push the clinics in the higher direction. That's all right but they put too much attention on testing and not enough on treatment, in my opinion.
To the OMH Office of Quality Management:
I have a response to the draft Clinic Standards of Care that you have put out for comment. What is being proposed that is new? Don't we do these things now, that is, question patients during an evaluation about mental health history, drug use, violent and suicide ideation, general physical health? If any of these are missing it's obvious the clinic should get its act together. But to propose a horde of extra features for clinics to follow in the column marked "exemplary" and insist these are the ones recommended for all seems extravagant.
It suggests that you've added sophisticated test batteries, the sort run by psychological testing companies and specialists and you've put more emphasis on quality control. While helpful I doubt if they are essential to the good working of a publicly subsidized mental health clinic. I think they are too costly to justify.
To my mind the real problems to be tackled lie in treating the assortment of people with complicated mental and physical conditions who come to the clinic nowadays. Particularly, those whose problems are largely sociological--stemming from their environment. Now, assessment is coupled with treatment. But it's only part of it and you can't have a treatment clinic that only does assessment. The clinic has to identify the most seriously mentally ill and sort them out from behavior problems like "problems of living"and those who come from stressful situations such as living in poverty, or homelessness or who are drug addicted, or sexually deviant, for instance.
I don't think the screening tests get at these kinds of people. Their main problems are simply outside the standard questions. For example, sexual offenders--what are the treatment options for them? Elderly people with dementia and/or serious mental illness require health care, housing and supports outside the mental health system; large numbers of teenagers and young adults have drug addiction and unsocialized behavior coupled with mental disturbance, coming from conditions in which they grow up; men and women coming out of jail and prison need to be reintegrated into society; people who don't speak English, and are among legal and illegal immigrant populations need all kinds of help, as do those with overlapping mental health and developmental and physical disability, and the people in outlying rural areas who can't easily access health care.
As I understand, more and more people are showing up with variations of mental illnesses and physical disorders which can't easily be separated out at a single evaluation. Yet each disorder needs to be treated in its own right. So the patients are presenting with more complications than formerly. And the screening tools won't make their treatment any easier, will it?
So I suggest instead of promoting more elaborate testing schemes for patients entering the system (while it's important to do evaluations right), what is needed more is for the state Office of Mental Health to add high quality staff to the clinics. We need better trained and better paid people working there, to do more than just offer talk therapy. The staff have to become more expert on benefits and entitlements like SSI and Medicaid; in how to place people in jobs, in housing and support services; how to help them find meals and food pantries, overnight shelter, where to get food stamps and cash assistance, child care, bus passes, an affordable lawyer, for example. That's what's missing now. And it's what gets them through a crisis or with confidence to face another day. (Roy Neville)
Tuesday, October 20, 2009
Custody bill re-surfaces in legislature
Should parent be forced to relinquish child to the state on grounds of parent's mental illness or mental retardation?
Bills introduced in last session of the state legislature (S2835 and A6668) over child custody and parental rights that remain alive in committee are drawing rapt attention of mental health advocates. The bills would remove mental illness and mental retardation as separate grounds for terminating parental rights under social services law, section 384b(4). About 40 organizations support the repealer bills, including NAMI-NYS and Mental Health Association of NYS, sponsored by Senator Shirley Huntley and Assemblyman Peter Rivera, chairs of the respective mental health committees. The state's Family Services Agency and a Homeless Coalition do not.
Social Services law section 384b(4) has four grounds for permanently terminating parental rights, the Mental Health Assn. points out in its advocacy brief: abandonment, permanent neglect, severe and repeated abuse, and “the parents are presently and for the foreseeable future unable, by reason of mental illness or mental retardation, to provide proper and adequate care for a child who has been in the care of an authorized agency for a period of one year.”
MHANYS strongly opposes 384b(4) because, it says, “it is discriminatory; decisions to terminate parental rights should be based on behavior and not condition; the substantive and procedural provisions are vague, subjective and easily misapplied, thus undermining the required standard of proof of clear and convincing evidence; and termination of parental rights is a drastic, permanent measure, severing forever a parent's right to be part of his or her child's life.”
Furthermore, "This statute was written prior to changes in mental health treatment promoting recovery and this statute is destructive public policy because parents are afraid to seek treatment for fear of losing their children and children are removed from families where there is no abuse or neglect.”
Well said. I think most NAMI families would agree. However, as I see it, the bill is not a “slam dunk.” There are reasons why some mothers with severe mental illness, who form part of a class of all mothers with mental illness, should not be the ones to bring up a child. Young mothers, particularly, and those with a first child, may suffer from the trauma of having given birth and the enormous emotional changes to their bodies by becoming a mother. For weeks or months after the baby is born, she will typically be monitored by the followup social workers to see if she demonstrates if she can adequately care for the baby. In many cases, I believe, mothers who are sicker than some others will prove to be poor care givers, because they cannot take care of their own lives and cannot possibly take care of another.
They may or may not love the baby—they simply lack responsibility. We see this over and over. A young mother may be re-hospitalized. She may have intruding relationships with boyfriends. She doesn't show good judgment. These traits are to be expected for someone single and on her own. But someone who is so burdened by her own life crashing around her, is a good bet to fail the child or harm it or temporarily abandon it, and we can't have that. This isn't so rare at all.
As evidence, the bill states that there is “an alarming rate of custody loss among parents with psychiatric or intellectual disabilities—as high as 80%. (Does this mean, 80% of such cases before a judge?) Statewide, about one-fourth of foster care placements involve at least one parent with serious mental health problems.” Does this indicate that taking custody away from a mentally ill mother is discriminatory? The bill also explains the high numbers. It finds “parents with disabilities are particularly vulnerable to loss of custody and termination of parental rights due to preconceived notions about their ability to parent and the focus on their diagnosis or condition, rather than their behavior, that is, ability to parent.”
It adds: “Parents with disabilities are not more likely to maltreat their children than parents without disabilities. There are many other factors that can be contributing which are not singled out in statute. Rather it is the behavior itself which should be the basis for termination of parental rights, not the condition.” The bill further contends “the law discriminates against parents with psychiatric or intellectual disability by not requiring the Dept. of Social Services agency to show that it made diligent efforts to reunite the family."
While my personal experience is based on a single case and I would differ with this evaluation, I support the contention that courts in these cases are stacked against the hapless single parent facing so crucial a test with very little on her side. She may be guilty about what she has done or not done, but she and her lawyer probably have little on which to support her case. The facts are that too many of the mothers lose their child, who shouldn't, even if it is justified in some cases. (Roy Neville)
Bills introduced in last session of the state legislature (S2835 and A6668) over child custody and parental rights that remain alive in committee are drawing rapt attention of mental health advocates. The bills would remove mental illness and mental retardation as separate grounds for terminating parental rights under social services law, section 384b(4). About 40 organizations support the repealer bills, including NAMI-NYS and Mental Health Association of NYS, sponsored by Senator Shirley Huntley and Assemblyman Peter Rivera, chairs of the respective mental health committees. The state's Family Services Agency and a Homeless Coalition do not.
Social Services law section 384b(4) has four grounds for permanently terminating parental rights, the Mental Health Assn. points out in its advocacy brief: abandonment, permanent neglect, severe and repeated abuse, and “the parents are presently and for the foreseeable future unable, by reason of mental illness or mental retardation, to provide proper and adequate care for a child who has been in the care of an authorized agency for a period of one year.”
MHANYS strongly opposes 384b(4) because, it says, “it is discriminatory; decisions to terminate parental rights should be based on behavior and not condition; the substantive and procedural provisions are vague, subjective and easily misapplied, thus undermining the required standard of proof of clear and convincing evidence; and termination of parental rights is a drastic, permanent measure, severing forever a parent's right to be part of his or her child's life.”
Furthermore, "This statute was written prior to changes in mental health treatment promoting recovery and this statute is destructive public policy because parents are afraid to seek treatment for fear of losing their children and children are removed from families where there is no abuse or neglect.”
Well said. I think most NAMI families would agree. However, as I see it, the bill is not a “slam dunk.” There are reasons why some mothers with severe mental illness, who form part of a class of all mothers with mental illness, should not be the ones to bring up a child. Young mothers, particularly, and those with a first child, may suffer from the trauma of having given birth and the enormous emotional changes to their bodies by becoming a mother. For weeks or months after the baby is born, she will typically be monitored by the followup social workers to see if she demonstrates if she can adequately care for the baby. In many cases, I believe, mothers who are sicker than some others will prove to be poor care givers, because they cannot take care of their own lives and cannot possibly take care of another.
They may or may not love the baby—they simply lack responsibility. We see this over and over. A young mother may be re-hospitalized. She may have intruding relationships with boyfriends. She doesn't show good judgment. These traits are to be expected for someone single and on her own. But someone who is so burdened by her own life crashing around her, is a good bet to fail the child or harm it or temporarily abandon it, and we can't have that. This isn't so rare at all.
As evidence, the bill states that there is “an alarming rate of custody loss among parents with psychiatric or intellectual disabilities—as high as 80%. (Does this mean, 80% of such cases before a judge?) Statewide, about one-fourth of foster care placements involve at least one parent with serious mental health problems.” Does this indicate that taking custody away from a mentally ill mother is discriminatory? The bill also explains the high numbers. It finds “parents with disabilities are particularly vulnerable to loss of custody and termination of parental rights due to preconceived notions about their ability to parent and the focus on their diagnosis or condition, rather than their behavior, that is, ability to parent.”
It adds: “Parents with disabilities are not more likely to maltreat their children than parents without disabilities. There are many other factors that can be contributing which are not singled out in statute. Rather it is the behavior itself which should be the basis for termination of parental rights, not the condition.” The bill further contends “the law discriminates against parents with psychiatric or intellectual disability by not requiring the Dept. of Social Services agency to show that it made diligent efforts to reunite the family."
While my personal experience is based on a single case and I would differ with this evaluation, I support the contention that courts in these cases are stacked against the hapless single parent facing so crucial a test with very little on her side. She may be guilty about what she has done or not done, but she and her lawyer probably have little on which to support her case. The facts are that too many of the mothers lose their child, who shouldn't, even if it is justified in some cases. (Roy Neville)
Monday, October 19, 2009
Federal judge rules against state in adult home case
What happens now?
This is a major triumph for the advocates and for Cliff Zucker, lead attorney at Disabilities Advocates, Inc. of Albany, which brought the landmark suit that now has supporters begging the governor not to appeal the decision. We refer to the ruling in September in which Judge Nicholas Garaufis of the federal district court in Brooklyn ordered NYS Governor David Paterson and commissioners of the State Health Dept and Office of Mental Health to find more suitable, integrated housing in the community for some 4,300 mentally ill residents of adult homes in NYC. The decision applies only to those larger, named adult homes that have at least 25 percent of residents with mental illness, called “impacted” homes. Many patients were placed there by the NY State Office of Mental Health as it emptied out its state psychiatric hospitals starting in the 1970s. While the ruling doesn't apply to homes other than those in the suit, it is seen to have wider implications.
According to the court document, these facilities which house former psychiatric hospital patients lack the staff and resources to provide integrated housing and services to promote community living. The court concluded that virtually all of the constituents are qualified to receive services in supported housing, “a far more integrated setting in which individuals with mental illness live in apartments scattered throughout the community and receive flexible support services as needed.”
The ruling says that the people in these homes should have access to all the services and opportunities of others living in the community and they do not do so now. The adult home prevents them from living in the most integrated setting possible, which is a violation of the Americans with Disabilities Act and the US Supreme Court decision in the “most integrated setting” case. The judge called the residents “psychological prisoners of the homes-- rarely going out for a meal, a walk in the park, going through a charade of rehabilitation, being herded into lines to take their medicine.”
Mr. Zucker, who heads Disabilities Advocates, a federally sponsored protection and advocacy law firm that has taken other class action suits on behalf of the mentally ill, filed the suit in 2003. While we commend him and the victory in this case, one wonders if the judge got it right. First, we notice the difference in the age group—residents in these adult homes are mostly over 60, while those placed in supported housing in our communities are more apt to be young people 18 and over, but seldom 60. Second, people who live in adult homes are in need of daily support services like showering and dressing, they get medication assistance, often get transportation to appointments and they eat meals in a common dining room. They must be ambulatory and continent when they enter the home even if some of them become incontinent once there. Some use a walker.
In contrast, residents in state-supported apartments may only have a case worker visit them once a month to check on them. They're on their own for meals and getting around. People wouldn't be placed in these apartments if they're incontinent or non-ambulatory. So how can the judge glibly find that these residents of adult homes can easily move into the lightly supervised apartments? The fact is, the alternate places don't exist at all—demand has exceeded supply for years and the state has tightened the apartments allotted to the counties. Schenectady County was only given six units this year and fewer in the last few years, with a far higher waiting list.
The non-profit housing sponsors won't even take the money to open new supported housing in counties north of NYC, with exceptions, because the stipend is so small and rents have climbed out of sight. So the housing companies have actually not renewed some apartments and frozen out their tenants. Could that happen to residents out of adult homes? Remaining state-backed housing for the mentally ill--licensed group homes and treatment apartments, are few and far between. The state would need a whole new housing regime to go ahead with more of them. So any newcomers will find a long wait even if the state makes a much greater investment in its housing opportunities.
Besides the shortage, some of us have continuing doubts about the judge's ruling. Families quoted in the NY Times Oct. 8 gave mixed feelings and some had fears that life on the outside for residents might prove difficult or even dangerous. The Times article says relatives are in a quandary because they have little or no power to dictate where they belong. They are not considered dangerous to themselves or others and are legally independent adults. The families do not support the homes, however. One of those quoted is Florence Weil, who as a NAMI member on Long Island has advocated for years for stricter state standards for the homes. She visited them, inspected records and testified before legislative committees. Little was changed in the face of the powerful adult home lobbies. And back in 2002, the homes received a scathing report in articles by Cliff Levy of the NY Times. The articles pointed to chaos in the sprawling homes in NYC, telling how those living in the worst homes were abused and neglected and f'orced to take medical treatments they didn't need.
Meanwhile, in an op-ed in the NY Post, E. Fuller Torrey, a well-known advocate for the mentally ill, calls the judge's decision “well-intentioned (but) will ultimately mean disaster for New Yorkers.” Torrey sees large numbers of untreated ex-adult home patients roaming the streets, winding up in shelters and jails. He blames the state Office of Mental Health for shifting state mental patients from hospitals to the adult homes starting in the 1970s. “What Judge Garaufis should do,” Torrey argues, “is to order the state to clean up the adult homes, limit their size, and set up a program of unannounced inspections by an independent state agency. Instead, he threw residents out on the street.”
Judge Garaufis hasn't ruled as of Oct. 20 on a specific plan to remove the residents or whether the homes can admit more mental patients. NYS OMH is said to be evaluating its options. While most of us would find closing the worst homes a godsend, the questions are how will these frail and elderly residents fare in the move outside the walls and will the state follow through in such precarious economic times. (Roy Neville)
This is a major triumph for the advocates and for Cliff Zucker, lead attorney at Disabilities Advocates, Inc. of Albany, which brought the landmark suit that now has supporters begging the governor not to appeal the decision. We refer to the ruling in September in which Judge Nicholas Garaufis of the federal district court in Brooklyn ordered NYS Governor David Paterson and commissioners of the State Health Dept and Office of Mental Health to find more suitable, integrated housing in the community for some 4,300 mentally ill residents of adult homes in NYC. The decision applies only to those larger, named adult homes that have at least 25 percent of residents with mental illness, called “impacted” homes. Many patients were placed there by the NY State Office of Mental Health as it emptied out its state psychiatric hospitals starting in the 1970s. While the ruling doesn't apply to homes other than those in the suit, it is seen to have wider implications.
According to the court document, these facilities which house former psychiatric hospital patients lack the staff and resources to provide integrated housing and services to promote community living. The court concluded that virtually all of the constituents are qualified to receive services in supported housing, “a far more integrated setting in which individuals with mental illness live in apartments scattered throughout the community and receive flexible support services as needed.”
The ruling says that the people in these homes should have access to all the services and opportunities of others living in the community and they do not do so now. The adult home prevents them from living in the most integrated setting possible, which is a violation of the Americans with Disabilities Act and the US Supreme Court decision in the “most integrated setting” case. The judge called the residents “psychological prisoners of the homes-- rarely going out for a meal, a walk in the park, going through a charade of rehabilitation, being herded into lines to take their medicine.”
Mr. Zucker, who heads Disabilities Advocates, a federally sponsored protection and advocacy law firm that has taken other class action suits on behalf of the mentally ill, filed the suit in 2003. While we commend him and the victory in this case, one wonders if the judge got it right. First, we notice the difference in the age group—residents in these adult homes are mostly over 60, while those placed in supported housing in our communities are more apt to be young people 18 and over, but seldom 60. Second, people who live in adult homes are in need of daily support services like showering and dressing, they get medication assistance, often get transportation to appointments and they eat meals in a common dining room. They must be ambulatory and continent when they enter the home even if some of them become incontinent once there. Some use a walker.
In contrast, residents in state-supported apartments may only have a case worker visit them once a month to check on them. They're on their own for meals and getting around. People wouldn't be placed in these apartments if they're incontinent or non-ambulatory. So how can the judge glibly find that these residents of adult homes can easily move into the lightly supervised apartments? The fact is, the alternate places don't exist at all—demand has exceeded supply for years and the state has tightened the apartments allotted to the counties. Schenectady County was only given six units this year and fewer in the last few years, with a far higher waiting list.
The non-profit housing sponsors won't even take the money to open new supported housing in counties north of NYC, with exceptions, because the stipend is so small and rents have climbed out of sight. So the housing companies have actually not renewed some apartments and frozen out their tenants. Could that happen to residents out of adult homes? Remaining state-backed housing for the mentally ill--licensed group homes and treatment apartments, are few and far between. The state would need a whole new housing regime to go ahead with more of them. So any newcomers will find a long wait even if the state makes a much greater investment in its housing opportunities.
Besides the shortage, some of us have continuing doubts about the judge's ruling. Families quoted in the NY Times Oct. 8 gave mixed feelings and some had fears that life on the outside for residents might prove difficult or even dangerous. The Times article says relatives are in a quandary because they have little or no power to dictate where they belong. They are not considered dangerous to themselves or others and are legally independent adults. The families do not support the homes, however. One of those quoted is Florence Weil, who as a NAMI member on Long Island has advocated for years for stricter state standards for the homes. She visited them, inspected records and testified before legislative committees. Little was changed in the face of the powerful adult home lobbies. And back in 2002, the homes received a scathing report in articles by Cliff Levy of the NY Times. The articles pointed to chaos in the sprawling homes in NYC, telling how those living in the worst homes were abused and neglected and f'orced to take medical treatments they didn't need.
Meanwhile, in an op-ed in the NY Post, E. Fuller Torrey, a well-known advocate for the mentally ill, calls the judge's decision “well-intentioned (but) will ultimately mean disaster for New Yorkers.” Torrey sees large numbers of untreated ex-adult home patients roaming the streets, winding up in shelters and jails. He blames the state Office of Mental Health for shifting state mental patients from hospitals to the adult homes starting in the 1970s. “What Judge Garaufis should do,” Torrey argues, “is to order the state to clean up the adult homes, limit their size, and set up a program of unannounced inspections by an independent state agency. Instead, he threw residents out on the street.”
Judge Garaufis hasn't ruled as of Oct. 20 on a specific plan to remove the residents or whether the homes can admit more mental patients. NYS OMH is said to be evaluating its options. While most of us would find closing the worst homes a godsend, the questions are how will these frail and elderly residents fare in the move outside the walls and will the state follow through in such precarious economic times. (Roy Neville)
Friday, October 16, 2009
Demise of the family-initiated housing model for people with mental illness
You must have heard about the family sponsored housing model for those with mental illness. Starting about six years ago, in 2003, a group of us in the Albany-Schenectady area met over and over to discuss plans to make this a reality. We would dedicate our own home or purchase a home together, or leave our home in an estate trust, to our own mentally ill adult child so he and others like him could live there. A not for profit housing sponsor could run the building or we could form a management group to do this. If the building itself was considered unsuitable, an agent could sell it and buy another, or an apartment or condominium that would fit the bill for our surviving mentally ill relative and perhaps another person chosen to live with him or her. The scheme would solve the impending problem of where will our mentally ill relatives live after we are gone, if they can't find government subsidized housing (or are thrown out of it) and can't afford an apartment on the private market.
We thought we had the answers. We went over all the details—about how to buy a house, set up a trust, decide who is to live there and by what rules, who operates the house, who pays the bills, whether this is wanted by our children, and is it financially feasible or just pie in the sky? We had a consultant at most of our meetings over the years 2003 to 2006. We invited in prospective partners from community agencies and a funding source to study more carefully the whole idea of families creating housing with all the risks that entailed. Why would we put money down on a house or leave our house in trust so that others who we may not even know would live there (with our own mentally ill relative)? It still made sense because we thought we could do it better than the government or even the housing providers, given our lasting devotion to our loved ones with these awful illnesses of the brain.
To explain our ideas to others I wrote up the family initiated housing proposals in the NAMI NYS newsletter, we talked it up at NAMI NYS meetings, and we met twice with members of the NY State Office of Mental Health, who responded with encouragement but no pledges of money. At one of our statewide NAMI conferences we held a workshop about this and received dozens of signups from other families who felt the same need and wanted to hear more about our plans. People called us from New York City to ask if their child could come to live in our house once it opened. All this was a harbinger for success. We only had to find the right house to buy or leave one to posterity to make a go of it.
Here is my story--the others have their stories, too. Back in 2003 I decided to buy a house for my son to live in with others like him who are mentally ill. I had the money, housing in Schenectady was quite cheap and I thought I knew the city well enough, as I had lived here over 40 years. Also, like the others I felt a need to secure a place for him (he has a sister who also is mentally ill and she might need a place, too) and there could come a time when the apartment he lives in will no longer be available or he will want to leave. I pictured various alternatives: a big old boarding house for men who could play pool and cards and the like; or a two-family house with men in one unit and women in the other; or a family type home for three or four with a live-in caregiver to be hired; or I buy the house and turn it over to a not for profit housing corporation in mental health to run and take care of the building. I talked to local directors of housing programs and to several parents in the NAMI orbit. While the parents expressed interest, our adult children didn't always seem good matches to live together—the first obstacle.
Toward the end of 2003 I put money down on a two bedroom flat near Union College, had a consultant look over the building and declare it in need of massive rework, so I got my money back. Once again I found a house I liked in mid-city and put money down, hedging my purchase on the need for a new driveway. The owner balked, so my check was returned. The third house on which I signed a purchase agreement proved successful. It was a large two-family in a nice section surrounded by single family homes where families raise their children. I didn't think it appropriate for a house full of mentally ill people to move in there. We shun discrimination of any kind but I had to know that placing disabled adults in a building alongside single family houses with children on a lovely tree lined street is a sensitive matter. You don't do it. So I rented to two families with children and put off my plans.
I thought if one of my tenants moved out I could reconsider leasing the apartment to two or three adults with mental illness. (If you saw our last newsletter for September-October you would have read about my trials this summer to rent to a disabled couple with children in the Section 8 housing program with the Schenectady Municipal Housing Authority. (See namischenectady.org for newsletter.) While the couple didn't eventually receive the apartment I was ready to face the questions: could they afford monthly payments even if the government pays all but 30 percent of their income for rent and utilities? Would they take good care of the building? Would they get along with neighbors? The important thing was that they badly needed a better place to live. They simply lost out to another bidder as time went by and I had to rent.
That was close. It almost worked, although the public housing agency had some crusty rules to break through. The MHA would have paid most of the rent up front, to my advantage. It does not provide case management however. If we are honest, we know people with serious mental illness often don't take care of their room or apartment. I would have had to secure extra help from one of the health care agencies to look in on those tenants. They have occasional crises and someone should be on call when they arise. As the house is in my name, or a trustee, one of us is responsible to see the house is kept in good condition, we must pay for maintenance and repairs, insurance, property and income taxes, and anything else. I think that few people with serious mental illness, the ones who need housing the most, can live independently without home visits from case workers. We know that things break down and emergencies arise from time to time unless there is professional assistance and this can be very costly.
If we turn ownership over to a not for profit housing provider, it generally wouldn't pay property tax or income tax on the property. That means it doesn't have to charge a high rent as we would have to do to cover taxes, mortgage and insurance costs. Our class of tenants have small incomes and can't pay rents of more than $400 or $500. The provider company conventionally makes repairs and provides at least minimal case management. But our group of parents couldn't agree on employing a housing provider and so we fell apart on this question as well as our children's incompatibility to live together.
We also failed to see how difficult it is for two or more of us to go in together to buy a house. With multiple owners there are bound to be disagreements about paying the bills and sharing the load. We wondered what we would do if one or two owners backed out of paying the mortgage or making lease payments, leaving someone else holding the bag. We really would have to own the property singly and that would exempt the others from having a voice in how it is used. We'd end up taking care of our own child at the expense of any other people in line for the housing plan with our design.
Meanwhile, house prices kept rising, reducing our options. Why not sell the house on the private market and use the proceeds to buy a condo or lease an apartment for our disabled son or daughter? With a special needs trust, the assets of the sale are safely invested for the disabled child for his lifetime and we can feel secure. But if we are to do so, we haven't helped solve the housing crisis for any of his comrades. We haven't lived up to the pledge of making this work out together, as families who cherish our children, know their vulnerability and fear they may become homeless in an uncertain future. The government can't be trusted to find enough housing for all those with severe mental illness. We hoped to copy the example of parents who joined hands to open homes for their mentally retarded children years ago.
But our children are significantly different. They won't agree to live where we want them to. They pick their own friends and roommates. We've had to realize the simple prospect of leaving our housing to our own kind won't even work if the child doesn't want to live there. And combining our effort with that of our friends makes the enterprise even less workable. We'd have to devote too much time and money and we're not meant to be business partners or know how to keep up a house. It's discouraging to realize we've failed. (Roy Neville)
We thought we had the answers. We went over all the details—about how to buy a house, set up a trust, decide who is to live there and by what rules, who operates the house, who pays the bills, whether this is wanted by our children, and is it financially feasible or just pie in the sky? We had a consultant at most of our meetings over the years 2003 to 2006. We invited in prospective partners from community agencies and a funding source to study more carefully the whole idea of families creating housing with all the risks that entailed. Why would we put money down on a house or leave our house in trust so that others who we may not even know would live there (with our own mentally ill relative)? It still made sense because we thought we could do it better than the government or even the housing providers, given our lasting devotion to our loved ones with these awful illnesses of the brain.
To explain our ideas to others I wrote up the family initiated housing proposals in the NAMI NYS newsletter, we talked it up at NAMI NYS meetings, and we met twice with members of the NY State Office of Mental Health, who responded with encouragement but no pledges of money. At one of our statewide NAMI conferences we held a workshop about this and received dozens of signups from other families who felt the same need and wanted to hear more about our plans. People called us from New York City to ask if their child could come to live in our house once it opened. All this was a harbinger for success. We only had to find the right house to buy or leave one to posterity to make a go of it.
Here is my story--the others have their stories, too. Back in 2003 I decided to buy a house for my son to live in with others like him who are mentally ill. I had the money, housing in Schenectady was quite cheap and I thought I knew the city well enough, as I had lived here over 40 years. Also, like the others I felt a need to secure a place for him (he has a sister who also is mentally ill and she might need a place, too) and there could come a time when the apartment he lives in will no longer be available or he will want to leave. I pictured various alternatives: a big old boarding house for men who could play pool and cards and the like; or a two-family house with men in one unit and women in the other; or a family type home for three or four with a live-in caregiver to be hired; or I buy the house and turn it over to a not for profit housing corporation in mental health to run and take care of the building. I talked to local directors of housing programs and to several parents in the NAMI orbit. While the parents expressed interest, our adult children didn't always seem good matches to live together—the first obstacle.
Toward the end of 2003 I put money down on a two bedroom flat near Union College, had a consultant look over the building and declare it in need of massive rework, so I got my money back. Once again I found a house I liked in mid-city and put money down, hedging my purchase on the need for a new driveway. The owner balked, so my check was returned. The third house on which I signed a purchase agreement proved successful. It was a large two-family in a nice section surrounded by single family homes where families raise their children. I didn't think it appropriate for a house full of mentally ill people to move in there. We shun discrimination of any kind but I had to know that placing disabled adults in a building alongside single family houses with children on a lovely tree lined street is a sensitive matter. You don't do it. So I rented to two families with children and put off my plans.
I thought if one of my tenants moved out I could reconsider leasing the apartment to two or three adults with mental illness. (If you saw our last newsletter for September-October you would have read about my trials this summer to rent to a disabled couple with children in the Section 8 housing program with the Schenectady Municipal Housing Authority. (See namischenectady.org for newsletter.) While the couple didn't eventually receive the apartment I was ready to face the questions: could they afford monthly payments even if the government pays all but 30 percent of their income for rent and utilities? Would they take good care of the building? Would they get along with neighbors? The important thing was that they badly needed a better place to live. They simply lost out to another bidder as time went by and I had to rent.
That was close. It almost worked, although the public housing agency had some crusty rules to break through. The MHA would have paid most of the rent up front, to my advantage. It does not provide case management however. If we are honest, we know people with serious mental illness often don't take care of their room or apartment. I would have had to secure extra help from one of the health care agencies to look in on those tenants. They have occasional crises and someone should be on call when they arise. As the house is in my name, or a trustee, one of us is responsible to see the house is kept in good condition, we must pay for maintenance and repairs, insurance, property and income taxes, and anything else. I think that few people with serious mental illness, the ones who need housing the most, can live independently without home visits from case workers. We know that things break down and emergencies arise from time to time unless there is professional assistance and this can be very costly.
If we turn ownership over to a not for profit housing provider, it generally wouldn't pay property tax or income tax on the property. That means it doesn't have to charge a high rent as we would have to do to cover taxes, mortgage and insurance costs. Our class of tenants have small incomes and can't pay rents of more than $400 or $500. The provider company conventionally makes repairs and provides at least minimal case management. But our group of parents couldn't agree on employing a housing provider and so we fell apart on this question as well as our children's incompatibility to live together.
We also failed to see how difficult it is for two or more of us to go in together to buy a house. With multiple owners there are bound to be disagreements about paying the bills and sharing the load. We wondered what we would do if one or two owners backed out of paying the mortgage or making lease payments, leaving someone else holding the bag. We really would have to own the property singly and that would exempt the others from having a voice in how it is used. We'd end up taking care of our own child at the expense of any other people in line for the housing plan with our design.
Meanwhile, house prices kept rising, reducing our options. Why not sell the house on the private market and use the proceeds to buy a condo or lease an apartment for our disabled son or daughter? With a special needs trust, the assets of the sale are safely invested for the disabled child for his lifetime and we can feel secure. But if we are to do so, we haven't helped solve the housing crisis for any of his comrades. We haven't lived up to the pledge of making this work out together, as families who cherish our children, know their vulnerability and fear they may become homeless in an uncertain future. The government can't be trusted to find enough housing for all those with severe mental illness. We hoped to copy the example of parents who joined hands to open homes for their mentally retarded children years ago.
But our children are significantly different. They won't agree to live where we want them to. They pick their own friends and roommates. We've had to realize the simple prospect of leaving our housing to our own kind won't even work if the child doesn't want to live there. And combining our effort with that of our friends makes the enterprise even less workable. We'd have to devote too much time and money and we're not meant to be business partners or know how to keep up a house. It's discouraging to realize we've failed. (Roy Neville)
Wednesday, October 7, 2009
Looking at the state's latest mental health master plan--Toward The New Jerusalem
The state just issued a draft in September of its latest five year projections for mental health services, called the 5.07 plan. This year's master plan is full of words like recovery, resilience and transformation, all pet expressions of the state commissioner of mental health, Michael Hogan.
These odd terms are at the core of the latest planning approaches and reveal a lot about what the agency thinks it is doing. Things start off with:“How do we create hope-filled, humanized environments and relationships in which people can grow?”
The commissioner replies forthrightly: “At the Office of Mental Health, we each find our own meaning in recovery and resiliency. At the OMH our embrace of recovery and resilience recognizes two truths. First, they each reflect a journey rather than a destination. Recovery is not remission. It is not a miracle cure. Rather, it is the process of living a good life despite illness and loss.”
He goes on to say, “The second truth is that recovery and resilience each depend on change made by the individuals involved. Treatment can help. Indeed, for most people, finding the right treatment is a foundation of recovery. But treatment alone is almost never enough. The recovery journey requires personal engagement and action.”
So it goes. We are on a journey toward transformation into better selves. We can pull ourselves up and out of our malaise if we see the light. Others have done it—read their stories. We can kick the habit of street drugs and alcohol, wake out of our stupor, start a brand new life, if we choose.
Maybe. The agency isn't really talking about people with schizophrenia, is it? The word is almost never mentioned, nor is bipolar depression nor any of the illnesses associated with emotional pain and suffering that can last a lifetime. These are the illnesses that may take another half century or longer to figure out and now offer few clues as to their origins, how to cure them or ease the suffering of victims.
The illnesses not mentioned are the ones most difficult and costly to treat, the ones that engender fear and distrust because people with severe brain illnesses can't always control their behavior. The seriously ill may not be on the OMH's radar anymore, along with people who are homeless, in jail and prison, on probation or parole, those with long or repeated hospital stays, who tie up emergency rooms and create problems for nursing home operators. There's a slew of severely mentally ill people who don't receive services and who never will from an agency that thinks the diseases are volitional—that is,where someone only needs to find the motivation to change their ways, find a job, or stay “clean”.
It's a mistake, I believe, when the planning is all about health and wellness and not illness. The book gets stuck on words like resilience and recovery, much like a sermon on Sunday morning. It wants us to believe there's a New Jerusalem out there, a shining light on a hill, a transforming vision of who we are and what we can become. If only we follow the precepts and guidelines of our benefactor, the state.
I'm being sarcastic because I think their stand has too much art in it, it's a smokescreen, part of a political strategy. In truth, they're cutting back millions of dollars in spending for community based mental health—where labor costs are high and some in the public and the legislature don't believe the money is well spent now.
As we suffer from stigma and disgrace, and the population of seriously mentally ill continues to grow, in the matter of spending on needed community services, the state capitulates, closes continuing day treatment programs, eliminates a valuable program called COPs, exerts pressure on the housing providers in order to recoup its so called “excess” Medicaid funds already spent by the group homes. Meanwhile, the state hospitals at OMH direction, refuse patients coming from psychiatric units of general hospitals who should be confined longer, in an unabashed policy reversal to save money
Much is said in the document about restructuring mental health clinics to see that their role is clarified and pay is better. Hospitals with psychiatric units are to receive rewards also. However, the state will continue to shift the locus of care from hospitals, nursing homes and adult homes to the community, without the money alongside. For children and adolescents, at least, there are more in-home services.
With all the emphasis in this document about mental health being an intricate part of general health and how problems are prevalent and troubling, we don't get a picture that they're going to make any frontal assaults on the barricades. “Gaining access to good care is like running the steeplechase--a long process with too many barriers” someone observes.
As to the state's vision, we are asked “What does good mental health care look like?” The reply: “Good care is accessible, personalized, continuous, and integrated, and it emphasizes the ability of each person to live, learn, work and participate fully in his or her community. The best of treatments, including medications, evidence-based behavioral intervention and psychotherapy, do not cure mental illness. Rather, they help people manage their symptoms.” And the new thrust helps people find the motivation.
That's as good as it gets in terms of a modest self appraisal. But we know how much more needs to be done to assure access and affordability of services and facilities. Too few with a serious mental illness hold jobs, live in decent housing, have companions and earn any real income.
Some topics are missing. For example, in the criminal justice arena: Why aren't steps taken to follow through under the law to take mentally ill prisoners out of punitive special housing in prisons? Why don't more city and town police officers receive inservice training from state and county mental health personnel? Why has OMH let the legislature put convicted sexual offenders in parts of some state psychiatric hospitals?
The plan does state that these are harsh economic times and budget cuts have stopped some progress. But it seems mentally disturbed people who are homeless or in jail or prison, who have significant physical problems as well as mental, who are elderly or frail, or stuck in nursing homes and adult homes, aren't attractive to the new creed. They're not included among the groups destined for recovery and we don't hear much about them in this document. .
The 5.07 plan doesn't really deal with them at all, yet they represent a good proportion of the state's troubled mentally ill. Some are wrongly confined in nursing homes in NY City, as a federal judge has recently ruled. It will take more than appeals to the soul to provide more spaces for these adults, to keep up with population growth, to serve veterans, the elderly and others—and this is the responsibility of the state Office of Mental Health. And it will take more than resilience to get it done. (Roy Neville)
These odd terms are at the core of the latest planning approaches and reveal a lot about what the agency thinks it is doing. Things start off with:“How do we create hope-filled, humanized environments and relationships in which people can grow?”
The commissioner replies forthrightly: “At the Office of Mental Health, we each find our own meaning in recovery and resiliency. At the OMH our embrace of recovery and resilience recognizes two truths. First, they each reflect a journey rather than a destination. Recovery is not remission. It is not a miracle cure. Rather, it is the process of living a good life despite illness and loss.”
He goes on to say, “The second truth is that recovery and resilience each depend on change made by the individuals involved. Treatment can help. Indeed, for most people, finding the right treatment is a foundation of recovery. But treatment alone is almost never enough. The recovery journey requires personal engagement and action.”
So it goes. We are on a journey toward transformation into better selves. We can pull ourselves up and out of our malaise if we see the light. Others have done it—read their stories. We can kick the habit of street drugs and alcohol, wake out of our stupor, start a brand new life, if we choose.
Maybe. The agency isn't really talking about people with schizophrenia, is it? The word is almost never mentioned, nor is bipolar depression nor any of the illnesses associated with emotional pain and suffering that can last a lifetime. These are the illnesses that may take another half century or longer to figure out and now offer few clues as to their origins, how to cure them or ease the suffering of victims.
The illnesses not mentioned are the ones most difficult and costly to treat, the ones that engender fear and distrust because people with severe brain illnesses can't always control their behavior. The seriously ill may not be on the OMH's radar anymore, along with people who are homeless, in jail and prison, on probation or parole, those with long or repeated hospital stays, who tie up emergency rooms and create problems for nursing home operators. There's a slew of severely mentally ill people who don't receive services and who never will from an agency that thinks the diseases are volitional—that is,where someone only needs to find the motivation to change their ways, find a job, or stay “clean”.
It's a mistake, I believe, when the planning is all about health and wellness and not illness. The book gets stuck on words like resilience and recovery, much like a sermon on Sunday morning. It wants us to believe there's a New Jerusalem out there, a shining light on a hill, a transforming vision of who we are and what we can become. If only we follow the precepts and guidelines of our benefactor, the state.
I'm being sarcastic because I think their stand has too much art in it, it's a smokescreen, part of a political strategy. In truth, they're cutting back millions of dollars in spending for community based mental health—where labor costs are high and some in the public and the legislature don't believe the money is well spent now.
As we suffer from stigma and disgrace, and the population of seriously mentally ill continues to grow, in the matter of spending on needed community services, the state capitulates, closes continuing day treatment programs, eliminates a valuable program called COPs, exerts pressure on the housing providers in order to recoup its so called “excess” Medicaid funds already spent by the group homes. Meanwhile, the state hospitals at OMH direction, refuse patients coming from psychiatric units of general hospitals who should be confined longer, in an unabashed policy reversal to save money
Much is said in the document about restructuring mental health clinics to see that their role is clarified and pay is better. Hospitals with psychiatric units are to receive rewards also. However, the state will continue to shift the locus of care from hospitals, nursing homes and adult homes to the community, without the money alongside. For children and adolescents, at least, there are more in-home services.
With all the emphasis in this document about mental health being an intricate part of general health and how problems are prevalent and troubling, we don't get a picture that they're going to make any frontal assaults on the barricades. “Gaining access to good care is like running the steeplechase--a long process with too many barriers” someone observes.
As to the state's vision, we are asked “What does good mental health care look like?” The reply: “Good care is accessible, personalized, continuous, and integrated, and it emphasizes the ability of each person to live, learn, work and participate fully in his or her community. The best of treatments, including medications, evidence-based behavioral intervention and psychotherapy, do not cure mental illness. Rather, they help people manage their symptoms.” And the new thrust helps people find the motivation.
That's as good as it gets in terms of a modest self appraisal. But we know how much more needs to be done to assure access and affordability of services and facilities. Too few with a serious mental illness hold jobs, live in decent housing, have companions and earn any real income.
Some topics are missing. For example, in the criminal justice arena: Why aren't steps taken to follow through under the law to take mentally ill prisoners out of punitive special housing in prisons? Why don't more city and town police officers receive inservice training from state and county mental health personnel? Why has OMH let the legislature put convicted sexual offenders in parts of some state psychiatric hospitals?
The plan does state that these are harsh economic times and budget cuts have stopped some progress. But it seems mentally disturbed people who are homeless or in jail or prison, who have significant physical problems as well as mental, who are elderly or frail, or stuck in nursing homes and adult homes, aren't attractive to the new creed. They're not included among the groups destined for recovery and we don't hear much about them in this document. .
The 5.07 plan doesn't really deal with them at all, yet they represent a good proportion of the state's troubled mentally ill. Some are wrongly confined in nursing homes in NY City, as a federal judge has recently ruled. It will take more than appeals to the soul to provide more spaces for these adults, to keep up with population growth, to serve veterans, the elderly and others—and this is the responsibility of the state Office of Mental Health. And it will take more than resilience to get it done. (Roy Neville)
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