Understanding that it is never over until the budget is signed by the Governor, if all goes well, SB-6182, the bill that would have removed RHCs from state statute, has died. As of 5:45, with cut-off at 6:00, it had not passed out of the Rules Committee, and Committee Chair Brad Owens' Aide did not consider it probable that it would at such a late hour.
How this would affect the budget proviso that would fund closure of FHMC is a question mark. In theory it should prevent it but those of us who depend on RHC services and those who want to be able to, some day, will have to stay vigilant right up to the end.
Saskia
Friday, March 5, 2010
Thursday, March 4, 2010
Pitting People With DD Against Each Other
SB 6182, should it become law, would remove RHCs from State statute. It would clear one obstacle from the path of closing the RHCs. Yesterday, in the morning it was added to the Sen. Ways & Means schedule and then passed on to the Rules Committee without having had a public hearing. Last year, it was tabled for lack of sufficient time for testimony in it's hearing! Why would public testimony have been avoided this year?
Those perpetuating the closure battle surely must know that RHCs actually set the basis for community funding; and closing them very likely would result in less, not more, available community funding for those who are currently wait listed ! So, whose interests could the closure push really be meant to serve? Who stands to gain, especially financially?
Pitting people with developmental disabilities against each other is wrong. Period. Each person is important!. Why not give up the attack strategy so we can work toward understanding and mutual support? Why not, in deed?
Saskia
Those perpetuating the closure battle surely must know that RHCs actually set the basis for community funding; and closing them very likely would result in less, not more, available community funding for those who are currently wait listed ! So, whose interests could the closure push really be meant to serve? Who stands to gain, especially financially?
Pitting people with developmental disabilities against each other is wrong. Period. Each person is important!. Why not give up the attack strategy so we can work toward understanding and mutual support? Why not, in deed?
Saskia
Sunday, February 28, 2010
FIX COMMUNITY QA
The House budget doesn't close Frances Haddon Morgan Center; The Senate budget would close it .
FHMC families are frightened at the possibility. One of their many reasons is inadequate "quality assurance" in the "community." Inadequate, that is, to protect cognitively impaired children or adults with severe developmental disabilites.
This is not to say that all “community” venues are bad, only that the QA system that should assure that they are good is ineffective. In an RHC, if there is a problem, someone sees it and it gets corrected. Standards are high. Enforcement is strict.
Not so in the "community." Neglect, abuse and mistakes can go on for months, even years without anyone noticing or fixing them. Audits are infrequent, inadequate and scheduled. Even State Operated Living Arrangement ( SOLA) workers report this; and some state auditors describe their reports & recommendations have been rewritten by their supervisors.
"Community" supervision of workers can be inadequate or non-existent. Caregivers are too often undertrained. Medications with critical side effects can be administered by workers with no pharmacology background. Supervision from off-site is considered sufficient for non-nursing home venues. This puts the resident at risk. Nurses working on-site would not be allowed to delegate to non-professional staff the responsibility for administering medications. That medication administration by non-pharmaceutically trained personnel is cheaper is not a reason to allow it for people with dd. Cost effectiveness should never pre-empt safety.
EXAMPLES OF PROBLEMS
A child of 9, paralyzed, at risk for aspiration, was left by the nurse in his mother's care. The nurse returned a little while later, having forgotten something. She found the mother had driven away, leaving the child alone in the house. When she reported it, the nurse was told that nothing could be done unless there were other offenses. Others were known, but none were on record.
An adult male, developmentally disabled, cognitively arrested at an early age (mentally retarded) was wheelchair-bound. Having been been moved to shared housing from an RHC several weeks before, he was falling asleep with his face in his food. On questioning, his roommate said this had been happening ever since he had moved in. When called upon by the roommate to attend to the sleeping man, the caregiver only sat him up and instructed him to eat, then left him alone. This was observed three times before the caregiver took the man away from the table. Next to the table, there was an open door leading to a stairway, where, if the sleepy man had been awake enough, he could have fallen down the stairs in his wheelchair. The man's behavior suggested that there was a medication adjustment needed or that the man might be having unrecognized seizures. DSHS was expected to return in about 6 weeks for a routine evaluation of the new living situation. Evidently, the caregiver did not associate the sleeping behavior with anything to be concerned about, as he had not reported it.
One mom tells of her son's hand having been deeply cut while he was dumpster diving for food, an activity that was approved by the person in charge of him at the group home where he was living. As she tells the story, the house would run out of food because the cognitively arrested residents, would spend all of their allowance the first day the money came in, eat all of the food, and, then, because there was no more food, the dumpster diving would become necessary.
Of course, she had her son moved, but what about the other residents? What if they had less attentive parents or their parents could not monitor them, or they were deceased?
One wheelchair-bound resident had been moved from an RHC to a house in which he could not access the bathroom because his wheelchair would not fit through the unmodified bathroom doorway. This was described by a visitor to the house.
Reported by former RHC resident families: after more than a year, day programs and activities promised at the time of moving from the RHC had not been made available for several; and for others, they had been withdrawn after the funding to the house had proved insufficient.
A young man with more or less high level mental retardation was speech impaired. He had no guardian or family. After weeks of missing him where he worked, the organization that employed him found him in jail. Since he had no ID on him, no one had been notified. The people who knew him were not allowed to have him released into their custody. They wound up arranging for a guardian ad-lidum in order to effect his release.
An RHC resident with a feeding tube and a history of aspiration pneumonia had been moved by DSHS to an adult family home. The RHC 's orientation for the caregivers and the instructions which accompanied the woman were very specific about the frequency with which she needed to be fed and the small quantities which were required in order to prevent aspiration. Apparently not having sufficient staff to observe the prescribed routine, the staff increased the quantities and decreased the number of feedings. The patient died, having aspirated regurgitated formula. As told by RHC staff loved her.
A big, young man who had been set up in an apartment with people assigned to watch over him looked normal, but was cognitively arrested and did not understand that it was not OK to take things that he found in stores or other peoples' homes. Those responsible for him reinforced his belief that it was OK by simply paying for whatever he had heisted. Finally, one time, the police were called. He became scared and upset, lost control. He was tazed by frightened policemen
Who can blame FHMC families for being frightened?
Our public servants should be held accountable for assuring that mentally retarded residents living in "community" homes are safe and well provided for. But the DSHS "community" system of QA is not set up to protect the individuals for whom it is responsible.
What about this situation? Should we be sending more people into poorly regulated environment? What can we do? What should be done? If you could design a system of QA, what would be the elements of it?
You are powerful.
Together we can be awesome!
Saskia
FHMC families are frightened at the possibility. One of their many reasons is inadequate "quality assurance" in the "community." Inadequate, that is, to protect cognitively impaired children or adults with severe developmental disabilites.
This is not to say that all “community” venues are bad, only that the QA system that should assure that they are good is ineffective. In an RHC, if there is a problem, someone sees it and it gets corrected. Standards are high. Enforcement is strict.
Not so in the "community." Neglect, abuse and mistakes can go on for months, even years without anyone noticing or fixing them. Audits are infrequent, inadequate and scheduled. Even State Operated Living Arrangement ( SOLA) workers report this; and some state auditors describe their reports & recommendations have been rewritten by their supervisors.
"Community" supervision of workers can be inadequate or non-existent. Caregivers are too often undertrained. Medications with critical side effects can be administered by workers with no pharmacology background. Supervision from off-site is considered sufficient for non-nursing home venues. This puts the resident at risk. Nurses working on-site would not be allowed to delegate to non-professional staff the responsibility for administering medications. That medication administration by non-pharmaceutically trained personnel is cheaper is not a reason to allow it for people with dd. Cost effectiveness should never pre-empt safety.
EXAMPLES OF PROBLEMS
A child of 9, paralyzed, at risk for aspiration, was left by the nurse in his mother's care. The nurse returned a little while later, having forgotten something. She found the mother had driven away, leaving the child alone in the house. When she reported it, the nurse was told that nothing could be done unless there were other offenses. Others were known, but none were on record.
An adult male, developmentally disabled, cognitively arrested at an early age (mentally retarded) was wheelchair-bound. Having been been moved to shared housing from an RHC several weeks before, he was falling asleep with his face in his food. On questioning, his roommate said this had been happening ever since he had moved in. When called upon by the roommate to attend to the sleeping man, the caregiver only sat him up and instructed him to eat, then left him alone. This was observed three times before the caregiver took the man away from the table. Next to the table, there was an open door leading to a stairway, where, if the sleepy man had been awake enough, he could have fallen down the stairs in his wheelchair. The man's behavior suggested that there was a medication adjustment needed or that the man might be having unrecognized seizures. DSHS was expected to return in about 6 weeks for a routine evaluation of the new living situation. Evidently, the caregiver did not associate the sleeping behavior with anything to be concerned about, as he had not reported it.
One mom tells of her son's hand having been deeply cut while he was dumpster diving for food, an activity that was approved by the person in charge of him at the group home where he was living. As she tells the story, the house would run out of food because the cognitively arrested residents, would spend all of their allowance the first day the money came in, eat all of the food, and, then, because there was no more food, the dumpster diving would become necessary.
Of course, she had her son moved, but what about the other residents? What if they had less attentive parents or their parents could not monitor them, or they were deceased?
One wheelchair-bound resident had been moved from an RHC to a house in which he could not access the bathroom because his wheelchair would not fit through the unmodified bathroom doorway. This was described by a visitor to the house.
Reported by former RHC resident families: after more than a year, day programs and activities promised at the time of moving from the RHC had not been made available for several; and for others, they had been withdrawn after the funding to the house had proved insufficient.
A young man with more or less high level mental retardation was speech impaired. He had no guardian or family. After weeks of missing him where he worked, the organization that employed him found him in jail. Since he had no ID on him, no one had been notified. The people who knew him were not allowed to have him released into their custody. They wound up arranging for a guardian ad-lidum in order to effect his release.
An RHC resident with a feeding tube and a history of aspiration pneumonia had been moved by DSHS to an adult family home. The RHC 's orientation for the caregivers and the instructions which accompanied the woman were very specific about the frequency with which she needed to be fed and the small quantities which were required in order to prevent aspiration. Apparently not having sufficient staff to observe the prescribed routine, the staff increased the quantities and decreased the number of feedings. The patient died, having aspirated regurgitated formula. As told by RHC staff loved her.
A big, young man who had been set up in an apartment with people assigned to watch over him looked normal, but was cognitively arrested and did not understand that it was not OK to take things that he found in stores or other peoples' homes. Those responsible for him reinforced his belief that it was OK by simply paying for whatever he had heisted. Finally, one time, the police were called. He became scared and upset, lost control. He was tazed by frightened policemen
Who can blame FHMC families for being frightened?
Our public servants should be held accountable for assuring that mentally retarded residents living in "community" homes are safe and well provided for. But the DSHS "community" system of QA is not set up to protect the individuals for whom it is responsible.
What about this situation? Should we be sending more people into poorly regulated environment? What can we do? What should be done? If you could design a system of QA, what would be the elements of it?
You are powerful.
Together we can be awesome!
Saskia
Friday, February 19, 2010
LONNIE’S STORY by Lonnie's Mom
Lonnie was one of those children who were admitted to Rainier School when he was barely fourteen years old. He will be sixty-two this year. He is the oldest of five siblings – one brother and three sisters. From the day Lonnie was born, he was extremely hyperactive and had an attention span of zero seconds. Elementary school class work was difficult for him. He couldn’t stay focused. Now, we call this syndrome dyslexia with ADHD, Attention Deficit Hyper Activity Disorder. For years Lonnie had difficulty falling asleep at night. When he was five years old he was diagnosed with epilepsy. The mild jerks that occurred while going to sleep were petit mal seizures.
Lonnie became increasingly frustrated as he approached adolescence and the severity of his seizures worsened. He developed severe behavior issues, and grand mal seizures. He was placed in a special education classroom only briefly before he went to live at Rainier School. Our family was so exhausted from caring for Lonnie for so many years!
Lonnie has done well at Rainier School and still enjoys the rich, social interactions of a community that is appropriate for his disability. He has more friends than anyone else I know. He has the freedom and safety of living on a college-like campus, cared for by people in all departments who are sensitive to the needs of medically fragile, multi-handicapped people. Everyone is considered a direct caregiver and is expected to provide expert service.
He is not isolated and restricted from the so-called “community". Rainier residents make trips to nearby shopping malls, zoos, fishing ponds, etc. and participate in community events as well as host activities on their own premises. Every resident is enrolled is some sort of vocational training or active treatment program. Lonnie is a grand example of what Rainier School has done for a person with such complex needs. It is appalling that anyone would want to take this away from him and the other Rainier residents. The current focus should be on expanding the critical services and living arrangements that Rainier School can provide to the many underserved, off-campus developmentally disabled people.
LOOK AROUND YOU! Small community developments have sprung up all over the Puget Sound area and country: senior retirement homes and nursing homes of all sizes and description; a multiple variety of apartment and condominium complexes with shopping and entertainment opportunities on the same property; recreation and medical complexes to meet special needs. All the places in the surrounding region wouldn’t have been built if they weren’t determined to be the most economical and efficient way to provide their special services. It seems to me that the planners of our Residential Habilitation Centers (RHCs) were ahead of their time with building facilities that were appropriate for our developmentally disabled citizens. The RHC community is appropriate for meeting all of their special needs – developmental, social, vocational, medical, nursing, psychological, recreational, behavioral, personal self-help, pharmaceutical, etc. It is puzzling how some in the developmental disabilities community think otherwise and persist with trying to persuade others to think like they do.
Many of us have experienced following the “modern twenty-first century” thought of placing our loved one in a “community” home. We tried placing Lonnie in one of the well-supervised, high-quality group homes for developmentally disabled people – twice. Both times I had to remove him immediately when I discovered that he was having increased seizures because of missed medication and was literally being placed in life threatening situations from lack of supervision. By the community advocates own words, deficiencies abound. If this sector can’t take care of the “least” vulnerable people, i.e. senior citizens, how are they going to cope with the “most” vulnerable? They will predictably end up in hospital emergency rooms, city and county jails and prisons, or in revitalized city morgues.
Jeannie B., Lonnie's Mom
(For Friends of Rainier link, see list at right)
Lonnie became increasingly frustrated as he approached adolescence and the severity of his seizures worsened. He developed severe behavior issues, and grand mal seizures. He was placed in a special education classroom only briefly before he went to live at Rainier School. Our family was so exhausted from caring for Lonnie for so many years!
Lonnie has done well at Rainier School and still enjoys the rich, social interactions of a community that is appropriate for his disability. He has more friends than anyone else I know. He has the freedom and safety of living on a college-like campus, cared for by people in all departments who are sensitive to the needs of medically fragile, multi-handicapped people. Everyone is considered a direct caregiver and is expected to provide expert service.
He is not isolated and restricted from the so-called “community". Rainier residents make trips to nearby shopping malls, zoos, fishing ponds, etc. and participate in community events as well as host activities on their own premises. Every resident is enrolled is some sort of vocational training or active treatment program. Lonnie is a grand example of what Rainier School has done for a person with such complex needs. It is appalling that anyone would want to take this away from him and the other Rainier residents. The current focus should be on expanding the critical services and living arrangements that Rainier School can provide to the many underserved, off-campus developmentally disabled people.
LOOK AROUND YOU! Small community developments have sprung up all over the Puget Sound area and country: senior retirement homes and nursing homes of all sizes and description; a multiple variety of apartment and condominium complexes with shopping and entertainment opportunities on the same property; recreation and medical complexes to meet special needs. All the places in the surrounding region wouldn’t have been built if they weren’t determined to be the most economical and efficient way to provide their special services. It seems to me that the planners of our Residential Habilitation Centers (RHCs) were ahead of their time with building facilities that were appropriate for our developmentally disabled citizens. The RHC community is appropriate for meeting all of their special needs – developmental, social, vocational, medical, nursing, psychological, recreational, behavioral, personal self-help, pharmaceutical, etc. It is puzzling how some in the developmental disabilities community think otherwise and persist with trying to persuade others to think like they do.
Many of us have experienced following the “modern twenty-first century” thought of placing our loved one in a “community” home. We tried placing Lonnie in one of the well-supervised, high-quality group homes for developmentally disabled people – twice. Both times I had to remove him immediately when I discovered that he was having increased seizures because of missed medication and was literally being placed in life threatening situations from lack of supervision. By the community advocates own words, deficiencies abound. If this sector can’t take care of the “least” vulnerable people, i.e. senior citizens, how are they going to cope with the “most” vulnerable? They will predictably end up in hospital emergency rooms, city and county jails and prisons, or in revitalized city morgues.
Jeannie B., Lonnie's Mom
(For Friends of Rainier link, see list at right)
Tuesday, February 16, 2010
New at ActionDD & THIS BLOG IS "OURS"
Today, I want to recommend you to some new links and posts @ actiondd.org. (To go to the site, click on the word, "ActionDD" toward the bottom of the list of websites to the left. )
Thank you to Paul Strand, Actiondd's webmaster for the new information. It should come in handy as you write to and talk with your legislators.
I was pleased to receive, off line, a query about why I am not posting more often. Here are my top 2 reasons:
Even though I began it, I do not regard this as "my blog." Instead, it is "ours." I would rather leave some space for all of you than fill it up just with my perspective. I have been encountering a lot of valuable material which will be posted, but also I know some of you have been writing some excellent pieces that could shed light on subjects important to us all. Some of you have extraordinary stories to tell: cautionary and/or heartwarming and inspiring. Some have needs that can be answered by others. As the telling and sharing grows, the blog will take on it's own character, that is, ours, collectively; and more frequent posts will result as people begin to participate rather than just read my posts.
If you are reading this and what is stopping you from contributing is not knowing how to publish in the blog format, you can email your post to me at saskialuciannow@gmail.com. You might have noticed that a few others already have done that!
Namaste,
Saskia
Thank you to Paul Strand, Actiondd's webmaster for the new information. It should come in handy as you write to and talk with your legislators.
I was pleased to receive, off line, a query about why I am not posting more often. Here are my top 2 reasons:
Even though I began it, I do not regard this as "my blog." Instead, it is "ours." I would rather leave some space for all of you than fill it up just with my perspective. I have been encountering a lot of valuable material which will be posted, but also I know some of you have been writing some excellent pieces that could shed light on subjects important to us all. Some of you have extraordinary stories to tell: cautionary and/or heartwarming and inspiring. Some have needs that can be answered by others. As the telling and sharing grows, the blog will take on it's own character, that is, ours, collectively; and more frequent posts will result as people begin to participate rather than just read my posts.
If you are reading this and what is stopping you from contributing is not knowing how to publish in the blog format, you can email your post to me at saskialuciannow@gmail.com. You might have noticed that a few others already have done that!
Namaste,
Saskia
Sunday, February 14, 2010
SOGGY BUT SPIRITED FHMC RESCUE RALLY
What an extraordinary labor of love! The day was wet, cold and grey, the site: the sidewalk of a busy Bremerton street and a parking lot, donated by Arnold's Furniture. The event was the statewide rally to rescue Frances Haddon Morgan Center. A couple of portable canopies kept the food dry and provided dry space for conversation. Dedicated RHC proponents got drenched while chanting and waving signs. Passersby, curious to know the score, parked, walked back in the rain, inquired, and in some cases joined in! "How can I help?" was the question of the day! Frances Haddon Morgan Center, it turns out, is very well regarded by it's local community!
Since the Washington State Federation of Employees sponsored the rally, it was a foregone conclusion that they would be there, even dedicated caregivers from the other side of the Cascades who had braved treacherous driving conditions in the mountains. Since the proposed closure of FHMC threatens their loved ones, parents and guardians were expected, too.
The surprise was the RHC supporters from the "community." My question to each was, "What brings you here; why do you support RHCs? I talked with some who know former FHMC residents who, having moved to the "community" have not done well, with a former investigator who highly respects the abuse- prevention measures taken in the RHCs in contrast to what he found in "community" venues, with a special ed teacher who wants to retain RHCs as alternatives for parents who do not realize that, some day, their child may outgrow their family's ability to deal with escalating behaviors at home, and with an indignant grad student who, having taken the stakeholder "survey" for the "study" that is being used to justify RHC closures, found it to be a farce.
I overheard caring DSHS employees considering how to help an RHC resident whom they knew, who, they were told, was out of control in her new "community" environment. In fact, I heard more than one such conversation. Another conversation between RHC staff members focused on the potential loss of professional expertise and especially on the toll that dispersion of services would take on synergistic information-sharing among RHC professionals about individuals in their mutual care. I did not realize it at the time, but what I never heard was any consideration of potential job losses. Looking back, it seems overwhelmingly evident that the primary reason for the rally was the support of the services that are provided by FHMC for all the people who need them.
The day was an eye-opener for me, not in terms of the need to keep open the RHCs, but, rather, the range of supporters and the depth of their conviction and commitment.
Reminding you that we all have each other, and to the extent that we each want the best for each person with dd, we are all on the same side!
Namaste,
Saskia
Since the Washington State Federation of Employees sponsored the rally, it was a foregone conclusion that they would be there, even dedicated caregivers from the other side of the Cascades who had braved treacherous driving conditions in the mountains. Since the proposed closure of FHMC threatens their loved ones, parents and guardians were expected, too.
The surprise was the RHC supporters from the "community." My question to each was, "What brings you here; why do you support RHCs? I talked with some who know former FHMC residents who, having moved to the "community" have not done well, with a former investigator who highly respects the abuse- prevention measures taken in the RHCs in contrast to what he found in "community" venues, with a special ed teacher who wants to retain RHCs as alternatives for parents who do not realize that, some day, their child may outgrow their family's ability to deal with escalating behaviors at home, and with an indignant grad student who, having taken the stakeholder "survey" for the "study" that is being used to justify RHC closures, found it to be a farce.
I overheard caring DSHS employees considering how to help an RHC resident whom they knew, who, they were told, was out of control in her new "community" environment. In fact, I heard more than one such conversation. Another conversation between RHC staff members focused on the potential loss of professional expertise and especially on the toll that dispersion of services would take on synergistic information-sharing among RHC professionals about individuals in their mutual care. I did not realize it at the time, but what I never heard was any consideration of potential job losses. Looking back, it seems overwhelmingly evident that the primary reason for the rally was the support of the services that are provided by FHMC for all the people who need them.
The day was an eye-opener for me, not in terms of the need to keep open the RHCs, but, rather, the range of supporters and the depth of their conviction and commitment.
Reminding you that we all have each other, and to the extent that we each want the best for each person with dd, we are all on the same side!
Namaste,
Saskia
Friday, February 12, 2010
RHC Residents' Rights Rally
RHC Residents' Rights Rally Saturday, Feb 13, 11:30-4:00
Help save the rights of families to choose the services for their loved ones that serve their "best interests."
Families, caregivers & union members from across the state are coming to rally for our loved ones!
We will share stories, & make friends and connections
to become even more effective to sustain the rights of all of the state's qualifying residents with DD, ( not just the current RHC residents).
If you care about someone who lives in an RHC,
if you work in an RHC and care about the rights and wellbeing of RHC residents,
if you have a loved one who lives in the community and you want the peace of mind provided by knowing that, if your loved one, one day, needs such a haven, it will be there for him or her,
please join the party!
Families and caregivers are coming from
Yakima Valley (coming over a snow pass both ways)
Rainier School
Fircrest School
Come meet these and other FHMC families and staff who have been working to rescue the RHCs and the rights of the residents who need them.
WHERE: Bremerton: Corner of Kitsap Way and Adele Avenue (where you turn off Kitsap Way to go to FHMC) in Arnold’s Furniture Parking lot
WHEN: 11:30 am to 4 pm Saturday, February 13
Help save the rights of families to choose the services for their loved ones that serve their "best interests."
Families, caregivers & union members from across the state are coming to rally for our loved ones!
We will share stories, & make friends and connections
to become even more effective to sustain the rights of all of the state's qualifying residents with DD, ( not just the current RHC residents).
If you care about someone who lives in an RHC,
if you work in an RHC and care about the rights and wellbeing of RHC residents,
if you have a loved one who lives in the community and you want the peace of mind provided by knowing that, if your loved one, one day, needs such a haven, it will be there for him or her,
please join the party!
Families and caregivers are coming from
Yakima Valley (coming over a snow pass both ways)
Rainier School
Fircrest School
Come meet these and other FHMC families and staff who have been working to rescue the RHCs and the rights of the residents who need them.
WHERE: Bremerton: Corner of Kitsap Way and Adele Avenue (where you turn off Kitsap Way to go to FHMC) in Arnold’s Furniture Parking lot
WHEN: 11:30 am to 4 pm Saturday, February 13
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