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Under what circumstances might a housing provider for people with mental illness in this area remove a resident from a group home or apartment? And in what cases may a housing sponsor refuse someone with mental illness who has applied and waited his or her turn for an available bed? Answers are a bit elusive while the questions get more important now. The state Office of Mental Illness has scaled back its annual contract awards to the counties for apartment and group home beds in the severe economic environment we have. The implication is that the state is pressuring the housing agencies to move people along faster from the more heavily serviced end of the spectrum of publicly subsidized beds to those with less support or to beds with no support at all. And there is evidence for this happening here.
Also, in the group homes and apartments run by mental health housing providers today there are more seriously mentally ill than before and those with a variety of co-existing medical and behavioral conditions. The state is known to pressure the housing providers to take in more patients from this mix, including the worst off, rather than have them sent to nursing homes or special care facilities which are more costly. So issues are sure to come to the forefront in the agencies about accepting someone with greater health complications for placement or not, and whether a resident is entitled to stay on with the agency once a complicating condition is noticed or aggravated.
The two main suppliers of apartments and group home beds in this county are Mohawk Opportunities and Rehabilitation Support Services (Schenectady YMCA has state subsidized beds but it primarily serves a broader clientele). Word has leaked out from families that here and there are examples where group home and apartment dwellers have been asked to move along the line or even out of the apartment system altogether. There might be several reasons for this, for example, the person's social and rehabilitation goals no longer fit the program at the level he is in with the housing sponsor. So he can logically be switched to another apartment giving him more independence, even if he isn't ready to move.
What are tenant rights in this regard? First, it's clear those who reside in the subsidized apartments have the same protections granted to all tenants under landlord-tenant laws in NY State. That means that tenants have due process—the tenant has to be notified of the charges against him ahead of a hearing in court, and can only be evicted for non payment of rent or behaviors that have led to complaints and would let a judge find good cause for removal, or for some other rules that favor landlords' regaining possession of their property.
And for the mentally ill specifically, here are rules in Section 595.9 of the state Office of Mental Health regulations: “A discharge planning process shall include, at a minimum, the following: (1) involvement of the resident, program staff, other community service providers, and collaterals as appropriate and agreed to by the resident; (2) clinical assessment of the resident's psychiatric status as well as his rehabilitation, physical, social and residential needs and goals, which is conducted by clinical staff. (3) p rovision to the resident of options. (4) referrals to appropriate community service and residential providers and (5) arrangements for appointments with service and residential providers.” It also says that to be “discharge-ready,” “the resident is willing to relocate to such housing.”
Furthermore there are the policy guidelines of the housing sponsors themselves. One of the agencies has these rules: “Decisions to discharge are based upon an individual's needs and circumstances. Discharges from the program are planned to correspond with an individual's achievement of rehabilitation goals....every effort is made to fully involve the individual, other service providers and his or her family in implementing a positive, planned discharge from the program.
“A written discharge summary/service plan is completed for every individual leaving the program. (It) indicates the circumstances surrounding discharge, summarizes progress in key areas, lists participants in the plan and includes services arranged and follow-up contacts. The guidelines also state, “when an individual satisfactorily demonstrates abilities in such areas as medication and symptom management, money management, personal hygiene, performing household chores, shopping, preparing meals, maintaining an adequate diet, etc., discharge is encouraged.”
With these safeguards would come the right to legal defense from attorneys at the Mental Hygiene Legal Service, part of the state Appellate Division court system.
Nevertheless, these rules don't make clear whether an agency can refuse to admit someone or remove a person who has a complex medical condition or behavioral problem or physical limitations. Many people living in the group homes have these special circumstances. Others have been asked to leave if they are using drugs or alcohol in the building, for instance, or if they are violent and pose a safety hazard to anybody else. It's the same with the broader population in the city--housing for the mentally ill doesn't seem different from group housing for drug dependent people or youth with problems or men and women living at the YMCA and YWCA.
Among the complicating conditions, the providers report that they are asked to take patients upon discharge from a hospital who are incontinent, and some of these people do reside in the homes. Are they entitled to refuse these patients from admission to a group home? There are residents with the HIV-AIDS virus. A staffer has suggested there is no reason for the other residents to fear having any of them as housemates. More objections might be posed to admitting someone with a criminal background because there have been occasions of reported theft of belongings or credit cards and misuse of the phone, for example. A parent insists the providers have to be more alert to this, given the vulnerability of these residents. There are also residents who cause accidents that might result in harm to themselves or others and endanger the facilities.
In each of these cases it would seem to depend on individual circumstances whether to admit someone or allow him to stay on. It should be up to the housing agency to decide if staff has the capability to manage patients with these complications, and not be forced by the state to accept patients otherwise. At the same time it is up to the agencies to show responsibility to admit patients waiting discharge from Ellis Hospital when they have a bed and reasonable ability to provide care for them. It would certainly save on the cost of care. (Roy Neville)
Saturday, January 30, 2010
Friday, January 22, 2010
Why should parents let their adult children go?
Part 2
Social workers (not Kevin Moran, our counselor at the Ellis Hospital support group) have at times accused the parents of coddling a son or daughter who has a serious mental illness or of abetting their bad behavior. That's because we lean over backwards to help them and sometimes lean too far. Now look at the examples we have of the difficulties parents face. (I've heard them interminably at our support group meetings.) And you'll see why we have to persist as not only the main source of their support but as advocates who justly seek more for them.
The question is whether parents try to do too much for this bunch of sometimes disorderly citizens, our mentally ill children, who live on the verge of society. Or whether we are right to do all we can, and in fact, should fight much harder on their behalf. After all, they are very sick at times and their conditions are so variable and present such complexities for treatment, we can't expect the mental health system to meet all their needs, or ours. But if we don't press harder, who is going to do it for them?
Listen to the stories of parents who come to the support group and you'll see that all is not right with services and benefit programs. They make the case that we ought to scream much louder to get people access to housing and clinic and into a bed if that's what is needed. Families want to help but can't because of bureaucratic rules and backlogs and the usual hangups of lack of staff or money. But the people in charge have no excuse when someone is truly sick and needs services now—not at the end of the line.
The government based mental health system defies logic and is blocked up needlessly. The mental health clinics in these counties are badly backed up, doctors are few and some are foreign speaking who may not fully understand our culture; children's services are weaker than adult services, with much less to offer. As an adult you must wait longer than necessary for the available apartments, SRO and group residence beds. You will meet obstacles applying for and getting approved for social services emergency benefits in this county, social security, Medicaid or Medicare, housing of all types, service visits to the home, children's services, transition services for teenagers moving into the adult system, drug and alcohol services—all in the mental health arena. Tragically, the jail is the only place where mentally ill people don't wait to get in and get a little attention.
Here are more complaints: social workers at the clinic do not mesh well with housing people and jobs people and continuing treatment and the alcohol counselors—some say, in order to hold onto their clients. They are mostly trained to do talk therapy and it won't do the trick for seriously ill people. The system has waiting lists and waiting lines, single points of entry that slow the process, rules that forbid someone on Medicaid from receiving two or more of the same kind of services at the same time, much too much paperwork for hospital and outpatient staff, big clogs in the hospital emergency room and psychiatric crisis service. In short, what parents say is that the system is muddled up, particularly to the new and uninitiated. It is as full of potholes as a late winter day in Schenectady. You have applications and approvals, confirmations and certifications, appeals and denials—enough to make many of us give up. It's why we have to go front for our loved ones more aggressively than before.
One of the parents in the circle has a son who takes off for NY City—he has no money, no friends there, just on his own. They get a call from him at a shelter. It's a different shelter this time. Is he safe? It can't be good. Someone's going to line up a job, he says. They will wire money That's what they live with, the anxiety of receiving the next phone call.
Another mother reports her son lived in his truck for much of the year, sponging off the parents, after he was hospitalized and then refused to take meds. He won't go in for treatment, he lost his job and broke up with his girlfriend. He doesn't speak civilly to his parents. Mom finally enrolled him in Medicaid. She's worried, forlornly searches for help.
And there's a couple with a daughter in her early 20s who repeatedly gets in trouble with the law, is in and out of hospitals, arrested and jailed in different counties. Her mother says she's cute as a pin. What's to become of her? I'll tell you what. It's more heart rending than most counselors or outsiders can imagine. The parents had nearly given up. Their lives were in turmoil with their daughter in and out of scrapes until they had a change of heart. If she wouldn't take their advice, they wouldn't let her back in the house. That was the game plan. But this is a young woman with all kinds of ambition and talent—she's held jobs and graduated college and no one gives up on someone so promising, yet so absorbed in her sickness and addiction.
So a few months ago she asked to come back once again, contritely, and her mother accepted. It lasted only a few weeks before her daughter absconded with a boyfriend, someone they disapprove of. They love the girl, like we all love our children. Their defense is like that of many of us, a kind of tough love, dealing with the unexpected and every possible disappointment. Nobody said it was going to be easy.
We don't give up on our children, even over a lifetime, but we won't try to fix their ways any more. Usually medicine and treatment can hold things even. If he or she is non-compliant, we must wait till they've faced enough of the pain and the tough life of going it alone. Then maybe he or she will come in to the clinic on their own. We'll be there for them. (Roy Neville)
Social workers (not Kevin Moran, our counselor at the Ellis Hospital support group) have at times accused the parents of coddling a son or daughter who has a serious mental illness or of abetting their bad behavior. That's because we lean over backwards to help them and sometimes lean too far. Now look at the examples we have of the difficulties parents face. (I've heard them interminably at our support group meetings.) And you'll see why we have to persist as not only the main source of their support but as advocates who justly seek more for them.
The question is whether parents try to do too much for this bunch of sometimes disorderly citizens, our mentally ill children, who live on the verge of society. Or whether we are right to do all we can, and in fact, should fight much harder on their behalf. After all, they are very sick at times and their conditions are so variable and present such complexities for treatment, we can't expect the mental health system to meet all their needs, or ours. But if we don't press harder, who is going to do it for them?
Listen to the stories of parents who come to the support group and you'll see that all is not right with services and benefit programs. They make the case that we ought to scream much louder to get people access to housing and clinic and into a bed if that's what is needed. Families want to help but can't because of bureaucratic rules and backlogs and the usual hangups of lack of staff or money. But the people in charge have no excuse when someone is truly sick and needs services now—not at the end of the line.
The government based mental health system defies logic and is blocked up needlessly. The mental health clinics in these counties are badly backed up, doctors are few and some are foreign speaking who may not fully understand our culture; children's services are weaker than adult services, with much less to offer. As an adult you must wait longer than necessary for the available apartments, SRO and group residence beds. You will meet obstacles applying for and getting approved for social services emergency benefits in this county, social security, Medicaid or Medicare, housing of all types, service visits to the home, children's services, transition services for teenagers moving into the adult system, drug and alcohol services—all in the mental health arena. Tragically, the jail is the only place where mentally ill people don't wait to get in and get a little attention.
Here are more complaints: social workers at the clinic do not mesh well with housing people and jobs people and continuing treatment and the alcohol counselors—some say, in order to hold onto their clients. They are mostly trained to do talk therapy and it won't do the trick for seriously ill people. The system has waiting lists and waiting lines, single points of entry that slow the process, rules that forbid someone on Medicaid from receiving two or more of the same kind of services at the same time, much too much paperwork for hospital and outpatient staff, big clogs in the hospital emergency room and psychiatric crisis service. In short, what parents say is that the system is muddled up, particularly to the new and uninitiated. It is as full of potholes as a late winter day in Schenectady. You have applications and approvals, confirmations and certifications, appeals and denials—enough to make many of us give up. It's why we have to go front for our loved ones more aggressively than before.
One of the parents in the circle has a son who takes off for NY City—he has no money, no friends there, just on his own. They get a call from him at a shelter. It's a different shelter this time. Is he safe? It can't be good. Someone's going to line up a job, he says. They will wire money That's what they live with, the anxiety of receiving the next phone call.
Another mother reports her son lived in his truck for much of the year, sponging off the parents, after he was hospitalized and then refused to take meds. He won't go in for treatment, he lost his job and broke up with his girlfriend. He doesn't speak civilly to his parents. Mom finally enrolled him in Medicaid. She's worried, forlornly searches for help.
And there's a couple with a daughter in her early 20s who repeatedly gets in trouble with the law, is in and out of hospitals, arrested and jailed in different counties. Her mother says she's cute as a pin. What's to become of her? I'll tell you what. It's more heart rending than most counselors or outsiders can imagine. The parents had nearly given up. Their lives were in turmoil with their daughter in and out of scrapes until they had a change of heart. If she wouldn't take their advice, they wouldn't let her back in the house. That was the game plan. But this is a young woman with all kinds of ambition and talent—she's held jobs and graduated college and no one gives up on someone so promising, yet so absorbed in her sickness and addiction.
So a few months ago she asked to come back once again, contritely, and her mother accepted. It lasted only a few weeks before her daughter absconded with a boyfriend, someone they disapprove of. They love the girl, like we all love our children. Their defense is like that of many of us, a kind of tough love, dealing with the unexpected and every possible disappointment. Nobody said it was going to be easy.
We don't give up on our children, even over a lifetime, but we won't try to fix their ways any more. Usually medicine and treatment can hold things even. If he or she is non-compliant, we must wait till they've faced enough of the pain and the tough life of going it alone. Then maybe he or she will come in to the clinic on their own. We'll be there for them. (Roy Neville)
Why can't parents let their adult children go?
part 1
We get a lesson often on Wednesday night from our leader at the support group who says parents have to let their mentally ill adult child go, to let him find his own way with his illness. We must give him the freedom to make his own decisions about his life and eventually gain understanding of his illness. That is the message.
Don't try to change your son's counselor at the clinic because he's not getting along. Don't listen to his tales of woe and boredom. Don't loan him the money and don't bail him out (just hypotheticals, the last didn't come up at the meeting)
We are told we can't fix what he is going through. He will have to go it alone, and if he wont take medicine or see a doctor or act in the ways we expect at home or out in public, we must let him suffer. That is, he will find that he is sicker and sadder without following the routes to treatment someone suggests for him. He will lose the support of friends and family, become more isolated, more miserable, full of anger and frustration. We see it happening with our young people and we want to do something to help. It's natural and it's what parents do. But is it right to keep on worrying, to feel we, too, share the sickness in the family and are somewhat blameful?
Absolutely not, the counselor tells us. We should have gotten over the blame game by now, even newcomers to the support group who haven't heard all the explanations. Families can't let themselves feel guilt over a child's mental illness—it's a no-fault brain disease with links both to heredity and one's environment. We understand that. But when we hear it we bite our tongues. We are usually the closest to the child, who seems still a child, now an adult on his or her own, shrouded in the veils of an illness like schizophrenia or bipolar disorder or deep depression. We know by intuition how painful this must be and how hard they must struggle to free themselves, to face the uncertainties of adult life with such a handicap. We feel an intense urge to steer the young person out of it.
It's a fine line to cross. On the one hand we don't want to abet their bad behavior, their sleeping all day or alternatively, staying out all night. We can't make them change no matter how much we want it to happen. Even the doctors know you can't make them take medicine they wont take. The question is: Do we ever abandon our children? What would we do if our child was diabetic or epileptic or had a severe learning disorder, for example?
Our counselor is persuasive. He wants us to take an enlightened position to learn how to communicate, how to act. To continue to be a responsive and responsible parent and try to hold the family together when it seems impossible to do so. But he is clear—we cannot let this person bamboozle us, tear the fabric of the family apart, ruin the calm and turn it into desperation with his rants and outrageous behavior. Some parents won't stand up to their grown children, they tell us that. And we see how they live. They feed and clothe the young man or woman into their thirties,forties and beyond, provide a roof over their heads, do their laundry, take their guff and hand them money for cigarettes. We are not without fault.
We're not being asked to stay out of the picture. He's saying we have to learn what the person is feeling when a sickness like schizophrenia takes over and we certainly need to be there for that person. But not move too far ahead. These are treatable illnesses, the ill person has to want to come in for care. We can't make them do this. But we can offer support, love and compassion. So long as we do not let our personal, motherly and fatherly feelings dominate.
We still have family roles to think about, to hold our families together in times of stress like this. It can strike hard with our loved one's brothers and sisters who feel guilt or shame over it. Our own health and well being matter, too. Mom and dad may need some counseling in their own right or as a pair, to understand what is happening and to avoid a breakup.
If you both can't confront the illness in the same way it can destroy much of the good feelings that keep a marriage intact, the counselor points out. With all the anger and frustration we must endure, is it any wonder the counselor has to caution us about our own coming to desperation? We need patience, not hyper-vigilance. Time heals. Let's see how things work out, he says. I see your son's doing better now, he's definitely doing better, so let's let things ride out for now.
It's hard to be that patient, given our own need to naturally and intuitively do our utmost to help our child. That's because we care, we are almost the only ones who care in a world that is harsh and unfeeling toward people as vulnerable as they are. (Roy Neville)
We get a lesson often on Wednesday night from our leader at the support group who says parents have to let their mentally ill adult child go, to let him find his own way with his illness. We must give him the freedom to make his own decisions about his life and eventually gain understanding of his illness. That is the message.
Don't try to change your son's counselor at the clinic because he's not getting along. Don't listen to his tales of woe and boredom. Don't loan him the money and don't bail him out (just hypotheticals, the last didn't come up at the meeting)
We are told we can't fix what he is going through. He will have to go it alone, and if he wont take medicine or see a doctor or act in the ways we expect at home or out in public, we must let him suffer. That is, he will find that he is sicker and sadder without following the routes to treatment someone suggests for him. He will lose the support of friends and family, become more isolated, more miserable, full of anger and frustration. We see it happening with our young people and we want to do something to help. It's natural and it's what parents do. But is it right to keep on worrying, to feel we, too, share the sickness in the family and are somewhat blameful?
Absolutely not, the counselor tells us. We should have gotten over the blame game by now, even newcomers to the support group who haven't heard all the explanations. Families can't let themselves feel guilt over a child's mental illness—it's a no-fault brain disease with links both to heredity and one's environment. We understand that. But when we hear it we bite our tongues. We are usually the closest to the child, who seems still a child, now an adult on his or her own, shrouded in the veils of an illness like schizophrenia or bipolar disorder or deep depression. We know by intuition how painful this must be and how hard they must struggle to free themselves, to face the uncertainties of adult life with such a handicap. We feel an intense urge to steer the young person out of it.
It's a fine line to cross. On the one hand we don't want to abet their bad behavior, their sleeping all day or alternatively, staying out all night. We can't make them change no matter how much we want it to happen. Even the doctors know you can't make them take medicine they wont take. The question is: Do we ever abandon our children? What would we do if our child was diabetic or epileptic or had a severe learning disorder, for example?
Our counselor is persuasive. He wants us to take an enlightened position to learn how to communicate, how to act. To continue to be a responsive and responsible parent and try to hold the family together when it seems impossible to do so. But he is clear—we cannot let this person bamboozle us, tear the fabric of the family apart, ruin the calm and turn it into desperation with his rants and outrageous behavior. Some parents won't stand up to their grown children, they tell us that. And we see how they live. They feed and clothe the young man or woman into their thirties,forties and beyond, provide a roof over their heads, do their laundry, take their guff and hand them money for cigarettes. We are not without fault.
We're not being asked to stay out of the picture. He's saying we have to learn what the person is feeling when a sickness like schizophrenia takes over and we certainly need to be there for that person. But not move too far ahead. These are treatable illnesses, the ill person has to want to come in for care. We can't make them do this. But we can offer support, love and compassion. So long as we do not let our personal, motherly and fatherly feelings dominate.
We still have family roles to think about, to hold our families together in times of stress like this. It can strike hard with our loved one's brothers and sisters who feel guilt or shame over it. Our own health and well being matter, too. Mom and dad may need some counseling in their own right or as a pair, to understand what is happening and to avoid a breakup.
If you both can't confront the illness in the same way it can destroy much of the good feelings that keep a marriage intact, the counselor points out. With all the anger and frustration we must endure, is it any wonder the counselor has to caution us about our own coming to desperation? We need patience, not hyper-vigilance. Time heals. Let's see how things work out, he says. I see your son's doing better now, he's definitely doing better, so let's let things ride out for now.
It's hard to be that patient, given our own need to naturally and intuitively do our utmost to help our child. That's because we care, we are almost the only ones who care in a world that is harsh and unfeeling toward people as vulnerable as they are. (Roy Neville)
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