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)
Friday, February 19, 2010
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
Thursday, February 11, 2010
TOGETHER, WE ARE AWESOME!
Thank you , everyone, for your letters to legislators, your stories that illustrate the value of RHCs! Be encouraged that they have paid off to the extent that the 3 RHC attack bills appear to be dead.
HOWEVER, please keep up your letters, calls and stories to legislators in order to prevent resurrection, next week, when the supplemental budgets are unveiled. If you haven't contacted your district's legislators, recently, now is the time to be sure they are up to speed!
You can find out who your legislator's are at: http://apps.leg.wa.gov/DistrictFinder/Default.aspx. Phone number: To find the phone number, click the legislator's name. Email. Find an on-line email form where you can paste in your message by clicking on "email".
You are powerful!
Saskia
HOWEVER, please keep up your letters, calls and stories to legislators in order to prevent resurrection, next week, when the supplemental budgets are unveiled. If you haven't contacted your district's legislators, recently, now is the time to be sure they are up to speed!
You can find out who your legislator's are at: http://apps.leg.wa.gov/DistrictFinder/Default.aspx. Phone number: To find the phone number, click the legislator's name. Email. Find an on-line email form where you can paste in your message by clicking on "email".
You are powerful!
Saskia
ABUSE & NEGLECT
On Feb 10, 2010, at 8:16 AM, marsha sutton wrote:
Letter to Ways and Means committee February 10, 2010
We ask you to not support SSB6780 which fails to address our concerns regarding SB6780.
In 2009 my husband and myself spoke before the House and Senate giving details of our daughter Rachel’s abuse in the private and community care facilities which went on for several years until she was finally successfully placed in an RHC where she has been a resident for the past 26 years. Rachel lives as full a life as possible for a profoundly disabled adult with a severe debilitating seizure disorder. Rachel also has problems communicating except to the staff that knows her well. She has many friends and enjoys going out into the community when able to function where she is an integral part of her community.
Washington State has a shamefully high abuse rate of disabled persons which is on the rise in many private and community run facilities with well documented cases. Sadly many of these cases go unreported or prosecuted. There has not been nearly enough done to protect the vulnerable from abuse. Our State says that it aims to fix the problems that expose our growing population of vulnerable adults to this abuse and neglect. But tell us how this can be accomplished without considerable amounts of time and expense. So we question the motives of anyone who would place our most vulnerable profoundly retarded into a progressively unsafe environment.
We are appalled to think that some of our own State Legislators continue to justify savings to the state budget by placing our most vulnerable and profoundly disabled into the private sector when the facts state there are no savings to the State Budget with such a disastrous move. Lawsuits from death and abuse of the disabled caused by such a move would not be in the best interest of the State of Washington. Those who would benefit the most would be the for-profit private operated care facilities.
Mild and moderately disabled have had some success when placed in the community, however, the most severely retarded with more complicated medical and behavioral needs do not. The profoundly disabled resident of RHCs deserve the safety net of isolated high quality living/care facilities and the medical services they offer.
It is time our State makes a firm commitment to our most profoundly disabled by stopping the trend to remove their choice to live in a safe environment free of abuse and neglect.
"Abuse issues, are rated the number one priority by women with disabilities according to the American Delphi survey conducted by Berkley Planning Associates."
Mr. & Mrs. Steve Sutton
Added information not in this letter:
Disabled women, like children, are very susceptible to abuse. Statistics show that disabled women are abused almost twice as much as non-disabled women, That is astounding!
The paragraph below was taken from "Disabled Women Rank Abuse Number One Issue" created by Kayjay.
'Abuse issues, are rated the number one priority by women with disabilities according to the American Delphi survey conducted by Berkley Planning Associated in their survey. This indicates that the disabled women, themselves, recognize abuse (those that are able to do so), especially caretaker abuse, as a high priority issue that gets little attention from most service providers and policy makers. They share with their non-disabled counterparts the fact that their intimate partners may physically, emotionally or verbally abuse them. However, they are subject to abuses that non-disabled women don't have to worry about such as the denial of medication, withholding attendant services, or denying access to assistive devices.'
Mr. & Mrs. Steve Sutton
Letter to Ways and Means committee February 10, 2010
We ask you to not support SSB6780 which fails to address our concerns regarding SB6780.
In 2009 my husband and myself spoke before the House and Senate giving details of our daughter Rachel’s abuse in the private and community care facilities which went on for several years until she was finally successfully placed in an RHC where she has been a resident for the past 26 years. Rachel lives as full a life as possible for a profoundly disabled adult with a severe debilitating seizure disorder. Rachel also has problems communicating except to the staff that knows her well. She has many friends and enjoys going out into the community when able to function where she is an integral part of her community.
Washington State has a shamefully high abuse rate of disabled persons which is on the rise in many private and community run facilities with well documented cases. Sadly many of these cases go unreported or prosecuted. There has not been nearly enough done to protect the vulnerable from abuse. Our State says that it aims to fix the problems that expose our growing population of vulnerable adults to this abuse and neglect. But tell us how this can be accomplished without considerable amounts of time and expense. So we question the motives of anyone who would place our most vulnerable profoundly retarded into a progressively unsafe environment.
We are appalled to think that some of our own State Legislators continue to justify savings to the state budget by placing our most vulnerable and profoundly disabled into the private sector when the facts state there are no savings to the State Budget with such a disastrous move. Lawsuits from death and abuse of the disabled caused by such a move would not be in the best interest of the State of Washington. Those who would benefit the most would be the for-profit private operated care facilities.
Mild and moderately disabled have had some success when placed in the community, however, the most severely retarded with more complicated medical and behavioral needs do not. The profoundly disabled resident of RHCs deserve the safety net of isolated high quality living/care facilities and the medical services they offer.
It is time our State makes a firm commitment to our most profoundly disabled by stopping the trend to remove their choice to live in a safe environment free of abuse and neglect.
"Abuse issues, are rated the number one priority by women with disabilities according to the American Delphi survey conducted by Berkley Planning Associates."
Mr. & Mrs. Steve Sutton
Added information not in this letter:
Disabled women, like children, are very susceptible to abuse. Statistics show that disabled women are abused almost twice as much as non-disabled women, That is astounding!
The paragraph below was taken from "Disabled Women Rank Abuse Number One Issue" created by Kayjay.
'Abuse issues, are rated the number one priority by women with disabilities according to the American Delphi survey conducted by Berkley Planning Associated in their survey. This indicates that the disabled women, themselves, recognize abuse (those that are able to do so), especially caretaker abuse, as a high priority issue that gets little attention from most service providers and policy makers. They share with their non-disabled counterparts the fact that their intimate partners may physically, emotionally or verbally abuse them. However, they are subject to abuses that non-disabled women don't have to worry about such as the denial of medication, withholding attendant services, or denying access to assistive devices.'
Mr. & Mrs. Steve Sutton
Tuesday, February 9, 2010
Dear RHC friends,
Below is what ARC has put out to their membership, today (excerpted.) This is really a shame. We should not be in the position of defending critical resources for people who already have been failed by the "community." Neither should "community" residents who genuinely do not have services be in the position they are. We should be working together to find solutions to everyone's needs. Once we have defeated this legislation, we can work to make common cause.
Please keep your personal stories coming, now to the Senate Ways & Means Committee with cc to your senator and the governor. You are doing a great job!
ARC LEADERSHIP IS FAILING TO RECOGNIZE OR ADMIT:
1. SSB-6780 would not provide equivalent services,"best interest" services, to current RHC residents. It would cause real harm to real people.
2. CURRENT RHC RESIDENTS ARE THERE BECAUSE THEY WERE ALREADY FAILED BY THE COMMUNITY.
Please make that clear when you write your loved ones' experience to Ways and Means committee members and your Senator with cc to the governor.
3. RHCs are a resource that serves community residents, enabling them to succeed there: Respite & crisis stabilization, currently. RHCs could be of more use to the "community" by providing RHC based professional services to "community" residents.
If you are willing, you can also send a copy of your letter or your story to me, Saskia, for publication on this blog at saskialucianow@gmail.com , or you can simply paste your story into a dialogue box (to open box, click below on "comments" or "link.")
Legislators can be encouraged, later, if the bill survives Ways and Means, to visit the blog for a collection of the experiences.
People working in RHCs or SOLAs, who believe in keeping RHCs open, may also help by writing personal experiences that demonstrate their value.
If you are a community parent who wants RHCs to be in place on the day that your loved one needs them, please write, now, to Ways & Means committee members. In addition, you might take the opportunity to say what is lacking about the community system. Comments about Quality Assurance or the lack of it would help them understand. Also, if you are willing, the same input would be welcome on ddexchange.blogspot.com. You can either email me at the above address, or submit your story in a dialogue box below.
See the the ActionDD response to SS - 6780, posted yesterday. As you write, you may want to source it, or even attach it.
Thanks and more thanks! We are all in this together!
Here, excerpted, is what ARC is telling their members, many of whom do not realize how much RHCs have changed or how important they are. See below ARC for this writer's close.
ARC's notice to membership (excerpted):
Have you or a loved one lived in a state institution?
Take Action!
Legislators want YOUR story of how community works!
There are about 18,000 individuals with developmental disabilities who live in the community on the DD caseload, yet have no paid services to help them. There are about 970 people in five Residential Habilitation Centers (what we call our state institutions). In Washington State, 21% of the Developmental Disabilities budget is used to support 3% of the DD caseload in the RHCs.
Advocates who wish to keep all five of our RHCs open and continue to use them are writing compelling personal stories to legislators telling them that their loved ones can't possibly live in the community, that the RHCs are the only place for individuals with significant disabilities. We know this is not true. Many individuals with more significant medical needs and disabilities are living fulfilling lives in the community.
If you once lived in an RHC or have a loved one who did who now lives in the community we would like you to share your personal story. You can respond to this alert and share your life in the community with all legislators and the Governor. You can also choose to send it to various news outlets. Let them know why living in the community is better than when you or your loved one lived in the RHC. Let them know your challenges and how you work around them.
We would like you to also share your story with us. You can reply to this email with your story and we will compile them and personally share them with legislators and their staff.
If their numbers are true, even if they aren't, it is, indeed, disturbing to see people needing what is not available to them. What ARC does not understand or admit is that closing the RHCs will not liberate money for those people they refer to. It would only deprive displaced RHC residents of the care and services they require.
What are your thoughts on the matter?
Saskia
Below is what ARC has put out to their membership, today (excerpted.) This is really a shame. We should not be in the position of defending critical resources for people who already have been failed by the "community." Neither should "community" residents who genuinely do not have services be in the position they are. We should be working together to find solutions to everyone's needs. Once we have defeated this legislation, we can work to make common cause.
Please keep your personal stories coming, now to the Senate Ways & Means Committee with cc to your senator and the governor. You are doing a great job!
ARC LEADERSHIP IS FAILING TO RECOGNIZE OR ADMIT:
1. SSB-6780 would not provide equivalent services,"best interest" services, to current RHC residents. It would cause real harm to real people.
2. CURRENT RHC RESIDENTS ARE THERE BECAUSE THEY WERE ALREADY FAILED BY THE COMMUNITY.
Please make that clear when you write your loved ones' experience to Ways and Means committee members and your Senator with cc to the governor.
3. RHCs are a resource that serves community residents, enabling them to succeed there: Respite & crisis stabilization, currently. RHCs could be of more use to the "community" by providing RHC based professional services to "community" residents.
If you are willing, you can also send a copy of your letter or your story to me, Saskia,
Legislators can be encouraged, later, if the bill survives Ways and Means, to visit the blog for a collection of the experiences.
People working in RHCs or SOLAs, who believe in keeping RHCs open, may also help by writing personal experiences that demonstrate their value.
If you are a community parent who wants RHCs to be in place on the day that your loved one needs them, please write, now, to Ways & Means committee members. In addition, you might take the opportunity to say what is lacking about the community system. Comments about Quality Assurance or the lack of it would help them understand. Also, if you are willing, the same input would be welcome on ddexchange.blogspot.com. You can either email me at the above address, or submit your story in a dialogue box below.
See the the ActionDD response to SS - 6780, posted yesterday. As you write, you may want to source it, or even attach it.
Thanks and more thanks! We are all in this together!
Here, excerpted, is what ARC is telling their members, many of whom do not realize how much RHCs have changed or how important they are. See below ARC for this writer's close.
ARC's notice to membership (excerpted):
Have you or a loved one lived in a state institution?
Take Action!
Legislators want YOUR story of how community works!
There are about 18,000 individuals with developmental disabilities who live in the community on the DD caseload, yet have no paid services to help them. There are about 970 people in five Residential Habilitation Centers (what we call our state institutions). In Washington State, 21% of the Developmental Disabilities budget is used to support 3% of the DD caseload in the RHCs.
Advocates who wish to keep all five of our RHCs open and continue to use them are writing compelling personal stories to legislators telling them that their loved ones can't possibly live in the community, that the RHCs are the only place for individuals with significant disabilities. We know this is not true. Many individuals with more significant medical needs and disabilities are living fulfilling lives in the community.
If you once lived in an RHC or have a loved one who did who now lives in the community we would like you to share your personal story. You can respond to this alert and share your life in the community with all legislators and the Governor. You can also choose to send it to various news outlets. Let them know why living in the community is better than when you or your loved one lived in the RHC. Let them know your challenges and how you work around them.
We would like you to also share your story with us. You can reply to this email with your story and we will compile them and personally share them with legislators and their staff.
If their numbers are true, even if they aren't, it is, indeed, disturbing to see people needing what is not available to them. What ARC does not understand or admit is that closing the RHCs will not liberate money for those people they refer to. It would only deprive displaced RHC residents of the care and services they require.
What are your thoughts on the matter?
Saskia
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