SB6780 (See the 2 posts, below.) was introduced right before the 3 part Seattle TIMES expose on abuses of Seniors in adult family homes. The kind of abuses described in the first article mimic those suffered by my sister, Kathy, in a community facility before she came to Fircrest. Be sure to read the article, as its message also speaks to the potential for current RHC residents should they be forced to move to community homes. In fact, such abuses already could be happening in the isolation of poorly overseen homes for people with dd.
You can visit the 3 part TIMES article here: http://seattletimes.nwsource.com/html/seniorsforsale/2010939195_seniors31.html
The writer says: "DSHS is not able to answer such questions as: Which homes and how many didn't provide enough food? What homes had assaults on residents?" and "Kathy Leitch, a deputy director who oversees the DSHS Aging and Disability Services Administration, said a hiring freeze — the result of state budget cuts — has left fewer investigators to monitor more homes. Many licensing and training standards may be outdated, she said. There's this idea that it's a cottage industry, and that the state shouldn't be overly regulatory. Personally, I think that's a bit naive." This by the head of the same agency that is responsible for the monitoring of community homes for people with dd! Frightening. Many of us have long held that "community" standards and oversight needed to be strengthened. This article makes it into an imperative, infact, into an emergency.
So what do you think?
Namaste,
Saskia Davis
Monday, February 1, 2010
You Can Help Defeat SB6780
If passed, SB6780 would not help "community" residents with dd, it would not save money for the state and it would harm to RHC residents. (See post below)
You can help defeat it: Tell the committee members your concerns and ask them to vote against SB6780.
1. Make calls to your Senator and to each of the members of the Senate Health and Long Term Care committee: Keep trying until you get through!
Keiser, Karen (D) Chair................(360) 786-7664
Franklin, Rosa (D) Vice Chair.......(360) 786-7656
Pflug, Cheryl (R) *.........................(360) 786-7608
Becker, Randi (R) .........................(360) 786-7602
Fairley, Darlene (D).......................(360) 786-7662
Marr, Chris (D) .............................(360) 786-7610
Murray, Ed (D)..............................(360) 786-7628
Parlette, Linda Evans ...................(360) 786-7622
You can leave a message with the Leg. Hotline for your Senator:.......800 562 6000
2. Public Hearing: Wednesday, Feb 3, 8:00 AM. Room 4 John Cherberg Bldg.
This is a very important hearing, too important to miss if you can possibly make it.
New To The Process? It isn't hard and it can be fun. Here is what to do:
~Watch your email in case a pre-hearing meeting is planned.
~Arrive about 7:30 and wait for the sign-in sheets to be brought out.
~Sign in even if you don't plan to testify so your presence counts.
~As you can, coordinate with fellow RHC advocates
~If you plan to testify, check the appropriate box.
~Find a seat inside the hearing room.
~Testimony can be written or verbal or both.
-Content: Personal is Powerful. And, yes, make it relevant to the value of your loved one or friend's RHC experience and the losses s/he would suffer were they to be closed.
-Verbal, try to have it down so you can say it only looking occasionally at your notes. You may be cut off if you read all of it. Time it in advance to be wrapped up in 2 minutes. If that seems too long, know that you don't have to speak for the full 2 minutes.
-Written: Try to keep it to a page. Bring 14 extra copies for committee members and staff and a few others you may want to leave with legislators who support RHCs. Leave the 14 them at the staff table at the side of the room.
Think of your voice as part of a choir. The music wouldn't be complete without it
Namaste,
Saskia
You can help defeat it: Tell the committee members your concerns and ask them to vote against SB6780.
1. Make calls to your Senator and to each of the members of the Senate Health and Long Term Care committee: Keep trying until you get through!
Keiser, Karen (D) Chair................(360) 786-7664
Franklin, Rosa (D) Vice Chair.......(360) 786-7656
Pflug, Cheryl (R) *.........................(360) 786-7608
Becker, Randi (R) .........................(360) 786-7602
Fairley, Darlene (D).......................(360) 786-7662
Marr, Chris (D) .............................(360) 786-7610
Murray, Ed (D)..............................(360) 786-7628
Parlette, Linda Evans ...................(360) 786-7622
You can leave a message with the Leg. Hotline for your Senator:.......800 562 6000
2. Public Hearing: Wednesday, Feb 3, 8:00 AM. Room 4 John Cherberg Bldg.
This is a very important hearing, too important to miss if you can possibly make it.
New To The Process? It isn't hard and it can be fun. Here is what to do:
~Watch your email in case a pre-hearing meeting is planned.
~Arrive about 7:30 and wait for the sign-in sheets to be brought out.
~Sign in even if you don't plan to testify so your presence counts.
~As you can, coordinate with fellow RHC advocates
~If you plan to testify, check the appropriate box.
~Find a seat inside the hearing room.
~Testimony can be written or verbal or both.
-Content: Personal is Powerful. And, yes, make it relevant to the value of your loved one or friend's RHC experience and the losses s/he would suffer were they to be closed.
-Verbal, try to have it down so you can say it only looking occasionally at your notes. You may be cut off if you read all of it. Time it in advance to be wrapped up in 2 minutes. If that seems too long, know that you don't have to speak for the full 2 minutes.
-Written: Try to keep it to a page. Bring 14 extra copies for committee members and staff and a few others you may want to leave with legislators who support RHCs. Leave the 14 them at the staff table at the side of the room.
Think of your voice as part of a choir. The music wouldn't be complete without it
Namaste,
Saskia
SB6780 RHC CLOSURE BILL
CLOSE ALL 5 RHCS?
Senator Freiser, chair of the Washington State Senate Health and Long Term Care committee, has introduced a new bill that would close all 5 of the residential habilitation centers (RHCs) for people with developmental disabilities. The is bill is a travesty; it's passage would be tragic for people who need and thrive in RHCs. Sponsors are Senators Ranker, Kline, Delvin and Fairley. To read it , click on SB6780 in the website list on the left.
What Impact Would The Bill Have?
SB 6780 mandates development by DSHS of a plan for closing 5 RHCs within 5 years, but does not require the legislature to pass legislation for the plan to be implemented. Where are the checks and balances? Where is the oversight over DSHS?
It would require closure of Frances Haddon Morgan Center, first, within one year.
It would require replacement of centralized RHCs with State Operated Living Arrangements (Solas which are group homes operated by the State.)
It would disperse professional services throughout the "community"
It would destroy the RHC safety net for the "community" residents in crisis.
It would try to substitute 2 crisis teams, one on each side of the mountains.
It would repeal Froberg law, the one legal protection that RHC intermediate care residents have that their best interests will be served. Froberg requires that moves from RHCs be in the person's best interests and provides for an adjudicated hearing in the event that the Guardian disagrees that the proposed move qualifies. These protections would be undone.
It would remove from their familiar homes, environments and "families" people whose stability and behavioral adaptations depend on constancy of accustomed environments, routines and relationships.
It would remove from their familiar caregivers and professional teams people whose medical stability depends on those relationships.
Severe transfer trauma would surely be the result for many, as it was in 2003-5 when 6 people died following forced/coerced moves from Fircrest and others lived on in confused misery, some eventually to recover monetary damages from the state and move back to Fircrest.
It would destroy the centralization and economy of scale that combine to make this state's RHCs national models.
It would dismantle professional teams who work most effectively because of their synergistic interactions.
Centralization of professional services, work programs and active treatment allows people with extremely debilitating conditions to have a life. Spread everything out and limit staff in homes spread throughout the community and, suddenly, what was a challenging and delicately choreographed, but do-able schedule in an RHC becomes impossible, or if not impossible, far more expensive to achieve in the "community."
At a cost that far exceeds $161 million dollars, (based on costs of the 2003-5 Fircrest closure attempt,) this ideologically driven legislation would destroy the one excellently functional part of Wa. state's services delivery system to people with developmental disabilities.
If there is a silver lining to the current budget-deficit cloud, it is that legislators will have to ask where the money will come from. Another salient question is, "Exactly how much would fullfilment of the bill's requirements cost?" The $161 million does not begin to cover the list of unknown or undisclosed costs. If the State could spare even the minimum $32 million per year, just think: if it could be used, instead, for unserved, wait-listed people, how many could receive the services they need for that mountain of money! Or what an excellent "community" quality assurance system could be developed and implemented with it!
What have I missed and what do you think?
Let this not be a time of dis-empowerment due to worry. Instead, let it move us to rise up , finding strength, courage and hope, together, each to do our part for the ultimate good of all our loved ones with dd, residents of RHCs and "community" homes alike!
Namaste,
Saskia Davis
Senator Freiser, chair of the Washington State Senate Health and Long Term Care committee, has introduced a new bill that would close all 5 of the residential habilitation centers (RHCs) for people with developmental disabilities. The is bill is a travesty; it's passage would be tragic for people who need and thrive in RHCs. Sponsors are Senators Ranker, Kline, Delvin and Fairley. To read it , click on SB6780 in the website list on the left.
What Impact Would The Bill Have?
SB 6780 mandates development by DSHS of a plan for closing 5 RHCs within 5 years, but does not require the legislature to pass legislation for the plan to be implemented. Where are the checks and balances? Where is the oversight over DSHS?
It would require closure of Frances Haddon Morgan Center, first, within one year.
It would require replacement of centralized RHCs with State Operated Living Arrangements (Solas which are group homes operated by the State.)
It would disperse professional services throughout the "community"
It would destroy the RHC safety net for the "community" residents in crisis.
It would try to substitute 2 crisis teams, one on each side of the mountains.
It would repeal Froberg law, the one legal protection that RHC intermediate care residents have that their best interests will be served. Froberg requires that moves from RHCs be in the person's best interests and provides for an adjudicated hearing in the event that the Guardian disagrees that the proposed move qualifies. These protections would be undone.
It would remove from their familiar homes, environments and "families" people whose stability and behavioral adaptations depend on constancy of accustomed environments, routines and relationships.
It would remove from their familiar caregivers and professional teams people whose medical stability depends on those relationships.
Severe transfer trauma would surely be the result for many, as it was in 2003-5 when 6 people died following forced/coerced moves from Fircrest and others lived on in confused misery, some eventually to recover monetary damages from the state and move back to Fircrest.
It would destroy the centralization and economy of scale that combine to make this state's RHCs national models.
It would dismantle professional teams who work most effectively because of their synergistic interactions.
Centralization of professional services, work programs and active treatment allows people with extremely debilitating conditions to have a life. Spread everything out and limit staff in homes spread throughout the community and, suddenly, what was a challenging and delicately choreographed, but do-able schedule in an RHC becomes impossible, or if not impossible, far more expensive to achieve in the "community."
At a cost that far exceeds $161 million dollars, (based on costs of the 2003-5 Fircrest closure attempt,) this ideologically driven legislation would destroy the one excellently functional part of Wa. state's services delivery system to people with developmental disabilities.
If there is a silver lining to the current budget-deficit cloud, it is that legislators will have to ask where the money will come from. Another salient question is, "Exactly how much would fullfilment of the bill's requirements cost?" The $161 million does not begin to cover the list of unknown or undisclosed costs. If the State could spare even the minimum $32 million per year, just think: if it could be used, instead, for unserved, wait-listed people, how many could receive the services they need for that mountain of money! Or what an excellent "community" quality assurance system could be developed and implemented with it!
What have I missed and what do you think?
Let this not be a time of dis-empowerment due to worry. Instead, let it move us to rise up , finding strength, courage and hope, together, each to do our part for the ultimate good of all our loved ones with dd, residents of RHCs and "community" homes alike!
Namaste,
Saskia Davis
Wednesday, January 27, 2010
Developmental Disabilities Exchange:
Everyone's Input is Welcome
This evening, I finally can invite everyone to participate in this blog. Until now, the "comment" section has been locked; and it seemed wrong to invite you to conversation and then prohibit it, so I've been waiting. I am new to this business of blogging, so I'm just feeling my way along.
Part of my background is as a facilitator of peer support groups. Our groups were premised on the belief that when each person truly feels heard, s/he has or can find all his/her own best answers. I am also depending on that premise as I begin this blog. Additionally, I am depending on synergy, the concept that the creative sum of a group is greater than the simple sum of it's members. We all have experience to share for the benefit of others. All of us have felt frustrated and mired, at one time or another, by the system. We can use this blog to ask others how they got past the same hurdles or strategize to do it together. Among us we have resources we perhaps do not even realize others are aching to learn about. And we all have experience that can help others broaden their perspective.
There has been so much division in our collective of dd advocates, caregivers and families, I hope to see healing of that rift. My vision for this blog is open sharing and caring, passionate dialogue which, while acknowledging differences, also respects them, bright, new ideas, and, eventually, a sense of safety, belonging, trust and mutual support: a sense of community and discovery of creative solutions.. Conversely, it will not be productive to disrespect the choices others have made for their loved ones or cast blame. People who feel the need to do that are encouraged to try on a sense of curiosity and interest, instead. It is amazing how transforming it can be when curiosity and interest can replace judgement. It takes real work, sometimes, to accomplish it, but it is always worth the effort.
Thanks for visiting. Please explore the site & leave something for us in the comment box. Your comment on something in the blog, a resource recommendation, your story, your self introduction, a need, whatever you are inspired to write.. It will help me to know you and it will give others courage, too. Thanks. "Comment Moderation" is turned on, but unless it is spam, or something truly crude or rude, I will post it as written. Saskia
Monday, January 18, 2010
RHCs: Keep or Close & Why?
Ever since Gov. Gregoire proposed in her budget to close all of the residential habilitation centers, (RHCs), I have been asking: "What would be gained?"
"Revenue savings?" Hardly! Even though the closure study missed many of the costs associated with "community" services for people with developmental disabilities, it did admit that RHC closures would cost the state money!
Liberation for RHC residents? From what? From their homes and friends? From excellent care, services and activities? How about from safe environments and programs assured by Federal audits ?
RHC residents are not prisoners. Their parents and guardians probably had to struggle to have them admitted. Despite the general rule that people receiving short term admissions (the only ones permitted), will be returned to "community" placements, some guardians are so happy with RHC care and services that they petition for long term residence.
"Better services for current RHC residents?" No.
For 3 reasons:
1) Most still living in RHCs are those requiring the most intensive services, more so than most "community" providers can offer. When DSHS last attempted to close Fircrest, it opened it's doors to "community" vendors who were encouraged to "window shop" for potential clients. Repeatedly and often, "community" vendors were reported to have said, "Keep Fircrest open: our facility cannot take care of these people."
2) RHC s comply with Federal Standards and are required to pass stringent audits; the quality assurance by the state for it's privatized, "community" clients is weaker.
3) Emergency departments, jail or mental hospitals are poor alternatives for people with developmental disabilities whose medical, psychiatric or behavioral conditions escalate beyond their "community" placements' capacity to accommodate them. RHCs provide the safety net and venues for their stabilization, in most cases for return to the "community".
So....what am I missing?
Saskia
"Revenue savings?" Hardly! Even though the closure study missed many of the costs associated with "community" services for people with developmental disabilities, it did admit that RHC closures would cost the state money!
Liberation for RHC residents? From what? From their homes and friends? From excellent care, services and activities? How about from safe environments and programs assured by Federal audits ?
RHC residents are not prisoners. Their parents and guardians probably had to struggle to have them admitted. Despite the general rule that people receiving short term admissions (the only ones permitted), will be returned to "community" placements, some guardians are so happy with RHC care and services that they petition for long term residence.
"Better services for current RHC residents?" No.
For 3 reasons:
1) Most still living in RHCs are those requiring the most intensive services, more so than most "community" providers can offer. When DSHS last attempted to close Fircrest, it opened it's doors to "community" vendors who were encouraged to "window shop" for potential clients. Repeatedly and often, "community" vendors were reported to have said, "Keep Fircrest open: our facility cannot take care of these people."
2) RHC s comply with Federal Standards and are required to pass stringent audits; the quality assurance by the state for it's privatized, "community" clients is weaker.
3) Emergency departments, jail or mental hospitals are poor alternatives for people with developmental disabilities whose medical, psychiatric or behavioral conditions escalate beyond their "community" placements' capacity to accommodate them. RHCs provide the safety net and venues for their stabilization, in most cases for return to the "community".
So....what am I missing?
Saskia
Saturday, January 16, 2010
KATHY'S STORY
I am guardian of my sister, Kathy, who entered my life as a brain injured newborn. I was 5 at the time. She was placed in my arms within the first hour after she arrived home. From then on, I thought she was mine.
Doctors advised my parents to "put the baby away and forget about her." That was never an option. Kathy would stay at home in our family. Period. In order to assure resources for Kathy, mother became very active, organizing parents and raising funds on behalf of children with cerebral palsy and mental retardation. At that time few services were available and public support programs were not even on the horizon.
Blind and unresponsive, Kathy met the "clinical" definition of a "vegetable" until she was 13 months old, when brain surgery, sub-dural drainage, liberated her to begin to engage with us and life. From then on, she pushed to make progress, therapy was found for her, and we all rallied to help her.
Helping Kathy learn was the theme of our lives. So much so that, as an adult, when an education application required an autobiography, my first attempt yielded only a list of Kathy's developmental accomplishments! A second try required me to rack my brain to dredge up the faintest memories of my own life markers.
When I was 13 and Kathy was 8, medical bills that could not be paid despite a 2 parent income, 24-7 care, and other stresses finally added up to divorce. One parent could not provide the 24-7 level care that had barely been accomplished by two, so, Mom tried live-in help, but was unable to find people who could handle an active, but physically unstable youth who had grand mal seizures, required constant, protective attention, medications and therapeutic support. Very few options were available for out-of-home placement, but she finally placed Kathy, during the work week, with a wonderful woman who took care of children with mental retardation in her home. We brought her home on weekends, and for the most part, I took care of her. After a time, though, the caregiver grew concerned that Kathy might be injured by the other, more mobile children, and, so, asked Mom to find another placement. She did, but it did not work out well at all. Kathy was neglected and abused; and so, after hospitalization, Mom brought her traumatized daughter back home to live. Kathy had been through so much, she cried and laughed uncontrollably & almost constantly.
By this time, I was away at nursing school. Mother, now remarried with a baby, had been able to hire a care-giver to help her. But her new husband had a heart attack, and his doctor advised her that he would die if the stress at home did not abate. Desperate, she talked a nursing home administrator into accepting Kathy; but they were not licensed to provide the level of care she needed. So, finally, she was forced to reconsider her vow never to place Kathy in an "institution." There were just 2 problems:
1. Admissions to the "institutions" were closed. 2. The supports Kathy needed in order to sustain the skills she had mastered were not available in Washington State's institutions. Still, she had to do something to save her husband's life; and Kathy had to have care. Out of other options, Mother prevailed on friends who knew the governor and his wife. With the governor's intervention, Kathy was admitted Fircrest.
The deal was done by the time I graduated. It was a nightmare, really. If RHCs of today were the same as Fircrest was, then, I would support closing them all.
I got an apartment and brought Kathy home to stay at Christmas. I thought if it worked out, I would find a way to keep her there with me. However, without the support she needed, she had already lost the skills that would enable me to care for her. I had been used to her walking and getting on and off the toilet with minimal help and being able to stay in bed without falling out. She had lost those abilities, and, moreover, without having been able to use her body, she was stiff and spastic, as I had never known her to be. I was devastated by my inability to manage her safely. Completely disillusioned, I took her back. I felt beaten and I could not fathom what else to do. It felt as if I was abandoning her. I am sure it felt that way to her, too. On one level, I was.
Fortunately, Fircrest improved. The Federal law, "Title Nineteen" was enacted: In exchange for improving conditions, providing programs and meeting safety, environmental and therapeutic program standards which were raised every year, matching Federal funds were provided to the state for the support of residents. Literally, if gradually, Title Nineteen transformed "institutions" from minimal-care-warehouses into exemplary, comprehensive care & resource centers, the residential habilitation centers (RHCs) of today. They are funded and focused for individually tailored support. And, today, as then, Federal audits ensure that standards are being met.
Kathy has never regained all of the skills she lost, but she has come a very long way back, and she is happy and comfortable. Remarkably, with the excellent support she is provided, she is still growing, recovering and learning at age 61.
Doctors advised my parents to "put the baby away and forget about her." That was never an option. Kathy would stay at home in our family. Period. In order to assure resources for Kathy, mother became very active, organizing parents and raising funds on behalf of children with cerebral palsy and mental retardation. At that time few services were available and public support programs were not even on the horizon.
Blind and unresponsive, Kathy met the "clinical" definition of a "vegetable" until she was 13 months old, when brain surgery, sub-dural drainage, liberated her to begin to engage with us and life. From then on, she pushed to make progress, therapy was found for her, and we all rallied to help her.
Helping Kathy learn was the theme of our lives. So much so that, as an adult, when an education application required an autobiography, my first attempt yielded only a list of Kathy's developmental accomplishments! A second try required me to rack my brain to dredge up the faintest memories of my own life markers.
When I was 13 and Kathy was 8, medical bills that could not be paid despite a 2 parent income, 24-7 care, and other stresses finally added up to divorce. One parent could not provide the 24-7 level care that had barely been accomplished by two, so, Mom tried live-in help, but was unable to find people who could handle an active, but physically unstable youth who had grand mal seizures, required constant, protective attention, medications and therapeutic support. Very few options were available for out-of-home placement, but she finally placed Kathy, during the work week, with a wonderful woman who took care of children with mental retardation in her home. We brought her home on weekends, and for the most part, I took care of her. After a time, though, the caregiver grew concerned that Kathy might be injured by the other, more mobile children, and, so, asked Mom to find another placement. She did, but it did not work out well at all. Kathy was neglected and abused; and so, after hospitalization, Mom brought her traumatized daughter back home to live. Kathy had been through so much, she cried and laughed uncontrollably & almost constantly.
By this time, I was away at nursing school. Mother, now remarried with a baby, had been able to hire a care-giver to help her. But her new husband had a heart attack, and his doctor advised her that he would die if the stress at home did not abate. Desperate, she talked a nursing home administrator into accepting Kathy; but they were not licensed to provide the level of care she needed. So, finally, she was forced to reconsider her vow never to place Kathy in an "institution." There were just 2 problems:
1. Admissions to the "institutions" were closed. 2. The supports Kathy needed in order to sustain the skills she had mastered were not available in Washington State's institutions. Still, she had to do something to save her husband's life; and Kathy had to have care. Out of other options, Mother prevailed on friends who knew the governor and his wife. With the governor's intervention, Kathy was admitted Fircrest.
The deal was done by the time I graduated. It was a nightmare, really. If RHCs of today were the same as Fircrest was, then, I would support closing them all.
I got an apartment and brought Kathy home to stay at Christmas. I thought if it worked out, I would find a way to keep her there with me. However, without the support she needed, she had already lost the skills that would enable me to care for her. I had been used to her walking and getting on and off the toilet with minimal help and being able to stay in bed without falling out. She had lost those abilities, and, moreover, without having been able to use her body, she was stiff and spastic, as I had never known her to be. I was devastated by my inability to manage her safely. Completely disillusioned, I took her back. I felt beaten and I could not fathom what else to do. It felt as if I was abandoning her. I am sure it felt that way to her, too. On one level, I was.
Fortunately, Fircrest improved. The Federal law, "Title Nineteen" was enacted: In exchange for improving conditions, providing programs and meeting safety, environmental and therapeutic program standards which were raised every year, matching Federal funds were provided to the state for the support of residents. Literally, if gradually, Title Nineteen transformed "institutions" from minimal-care-warehouses into exemplary, comprehensive care & resource centers, the residential habilitation centers (RHCs) of today. They are funded and focused for individually tailored support. And, today, as then, Federal audits ensure that standards are being met.
Kathy has never regained all of the skills she lost, but she has come a very long way back, and she is happy and comfortable. Remarkably, with the excellent support she is provided, she is still growing, recovering and learning at age 61.
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