Having spent the afternoon in consultation with old colleagues in our efforts to retain the best possible services for the greatest number of people with dd, I have come away with the desire to educate and communicate, even if it is one-way. I still hope that readers of the Developmental Disabilities Exchange will want to respond and make it a dialogue, with each other as well as with me, but until that happens, I will blog what I feel the need to communicate.
One person with whom I spoke, today, had a number of horror stories, tragedies, really, that have motivated her to work to preserve RHCs. She spoke of people with dd living in the general community who are being preyed upon for their meager food allowances, and for their bodies, or to get them to perpetrate crimes. These were eye-openers to me. I asked her if she could put them in a form to be published to educate legislators & the public. Due to her sources, it did not seem promising.
However, I was reminded of this summary which I recently wrote to a legislator who had adopted the reasoning too often cited by DSHS, ARC, the DDC and DRW: that there is a national trend to close institutions; and Washington state is behind the trend.
Rather than attack or embarrass him, I will allow him anonymity unless he chooses to contact readers via this blog. He wrote:
"Thank you for contacting me about 2SSB 5459, a bill that is titled “regarding services for people with developmental disabilities”, and was aimed at reducing the number of people in Residential Habilitation Centers as trends for providing services to persons with developmental disabilities have increasingly focused on doing so in community settings."
The following is my edited response.:
Senator, "You have been misinformed as to the "trends." Most states retain their state-run facilities. I believe the number is 39. Some others have found the experiment to eliminate them was a mistake and are working to rebuild them.
Because Fairview of Oregon was being considered as a model for closure of Washington's institutions, I interviewed all the parents and guardians that I could find whose children or wards had been moved from Fairview. The best review the closure got was by a mother who said her child had more choices now, but little interest in any of them. That was the best.
Others reported the following: Sexual abuse in an all male group home to which the abused female resident had been transported. (This cost the state quite an extensive settlement); a young man found by another parent who was checking on him due to infirmity of his mother; he was found sitting, filthy in his dark, dirty apartment with no food; the friend effected a transfer to a supervised situation, but had she not made the trip from her home in another town, who would have intervened? No one. Parents who had been promised circumstances by the state that had not been honored: broken promises such as: No opposite-sex housemates. No more than 2 housemates. No known violent or abusive residents in the same home with a wheelchair-bound, defenseless resident. Another mother said that before the Fairview closure her son with cerebral palsy had a life: he walked and went to work, recreational activities and church. After he was moved because Fairview closed, he was not taken out very often and when out, not taken out of the car. No activities were required of him. Due to inactivity, he lost his walking skills and, then, deteriorated from there until he died. This mother was very distraught, having tried repeatedly to motivate the caregivers to engage him in activities. A different woman told of having been on the waiting list for the promised services that the Fairview closure was supposed to provide. (The same claims made for closing RHCs in Washington). Her child, age 16, is deaf, mute, blind, with severe cerebral palsy and "mental retardation" + recent scoliosis. After 16 years on the waiting list for services, just this year, she finally has been granted a few hours a week of help. Still another mother said they put her child on a medication that caused him to be violent. After he struck her in the face during a visit, she tried repeatedly to get the medication changed, but the caregivers insisted it was needed; and the doctor would not return her calls. A father told of an ongoing fight for his previously abused daughter to have only female caregivers. A man who used to write about how things were going in the community for former Fairview residents felt unable to share what he knew because he said, now, the parents and guardians are too afraid to report or draw attention to the abuses, afraid of retaliation against their children, afraid they will be discharged from where they live and then there will be no place for them. (That situation is not unknown in Washington, already.)
I hope, Senator, that in the future, when you hear about "trends", you remember these examples.
I read the DDD budget decision package very carefully. It was filled with red flags, reasons for the legislature to stop and examine the proposals, to find them full of hope, but short on practical substance. It was also very revealing about dangerous shortcomings of the existing quality assurance program for "community" residents for which DSHS is responsible.
Passage of this bill is perhaps the biggest mistake I have ever seen made by the legislature. What was proposed is not workable and risks lives as well as physical and emotional health. You and your colleagues have simply begun a process that will hurt people without doing the good that you thought it would. I hope you will be diligent in following it, following the people who are being sacrificed for it, both in the near and distant future; and when you find harm that you have done, I hope you will have the integrity necessary to join in effecting the remedies, if , by then , it is not too late!
Not surprisingly, I have received no reply.
What do you think?
One person with whom I spoke, today, had a number of horror stories, tragedies, really, that have motivated her to work to preserve RHCs. She spoke of people with dd living in the general community who are being preyed upon for their meager food allowances, and for their bodies, or to get them to perpetrate crimes. These were eye-openers to me. I asked her if she could put them in a form to be published to educate legislators & the public. Due to her sources, it did not seem promising.
However, I was reminded of this summary which I recently wrote to a legislator who had adopted the reasoning too often cited by DSHS, ARC, the DDC and DRW: that there is a national trend to close institutions; and Washington state is behind the trend.
Rather than attack or embarrass him, I will allow him anonymity unless he chooses to contact readers via this blog. He wrote:
"Thank you for contacting me about 2SSB 5459, a bill that is titled “regarding services for people with developmental disabilities”, and was aimed at reducing the number of people in Residential Habilitation Centers as trends for providing services to persons with developmental disabilities have increasingly focused on doing so in community settings."
The following is my edited response.:
Senator, "You have been misinformed as to the "trends." Most states retain their state-run facilities. I believe the number is 39. Some others have found the experiment to eliminate them was a mistake and are working to rebuild them.
Because Fairview of Oregon was being considered as a model for closure of Washington's institutions, I interviewed all the parents and guardians that I could find whose children or wards had been moved from Fairview. The best review the closure got was by a mother who said her child had more choices now, but little interest in any of them. That was the best.
Others reported the following: Sexual abuse in an all male group home to which the abused female resident had been transported. (This cost the state quite an extensive settlement); a young man found by another parent who was checking on him due to infirmity of his mother; he was found sitting, filthy in his dark, dirty apartment with no food; the friend effected a transfer to a supervised situation, but had she not made the trip from her home in another town, who would have intervened? No one. Parents who had been promised circumstances by the state that had not been honored: broken promises such as: No opposite-sex housemates. No more than 2 housemates. No known violent or abusive residents in the same home with a wheelchair-bound, defenseless resident. Another mother said that before the Fairview closure her son with cerebral palsy had a life: he walked and went to work, recreational activities and church. After he was moved because Fairview closed, he was not taken out very often and when out, not taken out of the car. No activities were required of him. Due to inactivity, he lost his walking skills and, then, deteriorated from there until he died. This mother was very distraught, having tried repeatedly to motivate the caregivers to engage him in activities. A different woman told of having been on the waiting list for the promised services that the Fairview closure was supposed to provide. (The same claims made for closing RHCs in Washington). Her child, age 16, is deaf, mute, blind, with severe cerebral palsy and "mental retardation" + recent scoliosis. After 16 years on the waiting list for services, just this year, she finally has been granted a few hours a week of help. Still another mother said they put her child on a medication that caused him to be violent. After he struck her in the face during a visit, she tried repeatedly to get the medication changed, but the caregivers insisted it was needed; and the doctor would not return her calls. A father told of an ongoing fight for his previously abused daughter to have only female caregivers. A man who used to write about how things were going in the community for former Fairview residents felt unable to share what he knew because he said, now, the parents and guardians are too afraid to report or draw attention to the abuses, afraid of retaliation against their children, afraid they will be discharged from where they live and then there will be no place for them. (That situation is not unknown in Washington, already.)
I hope, Senator, that in the future, when you hear about "trends", you remember these examples.
I read the DDD budget decision package very carefully. It was filled with red flags, reasons for the legislature to stop and examine the proposals, to find them full of hope, but short on practical substance. It was also very revealing about dangerous shortcomings of the existing quality assurance program for "community" residents for which DSHS is responsible.
Passage of this bill is perhaps the biggest mistake I have ever seen made by the legislature. What was proposed is not workable and risks lives as well as physical and emotional health. You and your colleagues have simply begun a process that will hurt people without doing the good that you thought it would. I hope you will be diligent in following it, following the people who are being sacrificed for it, both in the near and distant future; and when you find harm that you have done, I hope you will have the integrity necessary to join in effecting the remedies, if , by then , it is not too late!
Not surprisingly, I have received no reply.
What do you think?
