See our video about RHCs. It's just 5 minutes. Worthwhile. Let me know what you think.
Here are 2 links. The first is one I saved of the original version. The second is the same except we added a "thank you" to professional staff in order to cover help protect them from being accused of using government time to share their expert views.
http9qnfKk0vuGY&feature=youtu.bes://www.youtube.com/watch?v=
https://www.youtube.com/watch?v=qZh8SQoOs18&feature=share
Showing posts with label THE RHC CONTROVERSY. Show all posts
Showing posts with label THE RHC CONTROVERSY. Show all posts
Saturday, March 19, 2016
Sunday, July 3, 2011
Progress or Pie in the Sky?
The governor has signed 5459 into law. As noted previously, it is a very flawed law. As I have been assessing the process by which this happened, I keep running into information which makes me question it, question the legitimacy of the process. I wish I were an attorney with such information at my disposal. I have so many questions!
Truly, there is no economic benefit to society, nor any to displaced RHC residents, to closing any RHCs, only benefits to vendors. That is the most generous assessment I have been able to make. Speaking with legislators who were lobbied by people who, themselves, are affected by intellectual disabilities, I am learning that some brought photos to show the legislators, photos of homes which they said had been bought for them by the state, homes that were fancier than those in which the some of the legislators, themselves live. One related that one of the self-lobbying group with id/dd had expressed such appreciation for her caregivers, salaries of $1,000,000 were being suggested.
These people are innocents; and so are the parents and guardians who buy into the promises made to them that their loved ones will live happy, near normal lives "in the community" if they only will leave the RHC or not insist on being admitted to one. Pie in the Sky! Many, instead, are truly stranded once they have left the safety of the RHC. Many others are stranded having been "diverted" from admission to an RHC. See the welcome article that tells the story of Thomas Felak by Cheryl Felak for her new list serve, meant to bring parents and guardians together, much as this blog is meant to do. Just click on this article's title.
I remember the days when our family thought my sister would one day lead a normal life. It was a hard goal to give up, but really, she would not have benefited if we had pushed her to "be normal," when she couldn't be. Yet, when we supported her just where she was in her own process , loving her unconditionally, she was able to continue making progress relative to her own potential, and be happy in that. Isn't that what underlies our dreams for our loved ones, that they be happy being who and however they are?
Aside from the personal, the broken hearts that accompany the broken promises and broken dreams, there is a societal consideration that should not be ignored.
Lets just suppose that the state could buy those fancy houses for people to live in the community plus staff them for their 24-7 care needs. How far would the money go? How many others would be deprived of services because all the money would be used up for the privileged few who got the fancy houses and primo services that these innocents think is due everyone? Compared to the numbers who can receive services when they are shared in RHCs, the numbers would be very small, indeed.
This is not to say that everyone who lives in an RHC does so because it is a way to stretch tax dollars, nor is it to say that everyone with id/dd should live in such a protective, inclusive community as an RHC, but RHC communities, by law, must & do provide excellent services , everything needed by their high acuity residents. They do have their place on the vast disability spectrum of needed services.
Truly, there is no economic benefit to society, nor any to displaced RHC residents, to closing any RHCs, only benefits to vendors. That is the most generous assessment I have been able to make. Speaking with legislators who were lobbied by people who, themselves, are affected by intellectual disabilities, I am learning that some brought photos to show the legislators, photos of homes which they said had been bought for them by the state, homes that were fancier than those in which the some of the legislators, themselves live. One related that one of the self-lobbying group with id/dd had expressed such appreciation for her caregivers, salaries of $1,000,000 were being suggested.
These people are innocents; and so are the parents and guardians who buy into the promises made to them that their loved ones will live happy, near normal lives "in the community" if they only will leave the RHC or not insist on being admitted to one. Pie in the Sky! Many, instead, are truly stranded once they have left the safety of the RHC. Many others are stranded having been "diverted" from admission to an RHC. See the welcome article that tells the story of Thomas Felak by Cheryl Felak for her new list serve, meant to bring parents and guardians together, much as this blog is meant to do. Just click on this article's title.
I remember the days when our family thought my sister would one day lead a normal life. It was a hard goal to give up, but really, she would not have benefited if we had pushed her to "be normal," when she couldn't be. Yet, when we supported her just where she was in her own process , loving her unconditionally, she was able to continue making progress relative to her own potential, and be happy in that. Isn't that what underlies our dreams for our loved ones, that they be happy being who and however they are?
Aside from the personal, the broken hearts that accompany the broken promises and broken dreams, there is a societal consideration that should not be ignored.
Lets just suppose that the state could buy those fancy houses for people to live in the community plus staff them for their 24-7 care needs. How far would the money go? How many others would be deprived of services because all the money would be used up for the privileged few who got the fancy houses and primo services that these innocents think is due everyone? Compared to the numbers who can receive services when they are shared in RHCs, the numbers would be very small, indeed.
This is not to say that everyone who lives in an RHC does so because it is a way to stretch tax dollars, nor is it to say that everyone with id/dd should live in such a protective, inclusive community as an RHC, but RHC communities, by law, must & do provide excellent services , everything needed by their high acuity residents. They do have their place on the vast disability spectrum of needed services.
Saturday, February 19, 2011
Because We Care - Beyond Inclusion
HOW CAN THIS HAPPEN?
The scenario below is true. The client was 14 at the time. He has a rare genetic syndrome which causes a global developmental delay, early onset pediatric dementia (his brain is shrinking), behavior problems coupled with manic and psychotic episodes. This was after his 5th hospital admission in 1 - 1/2 years.
He was on a Home and Community Based Service Waiver at the time.
12/2008 - Admitted to Seattle Children’s - 2 week admission (4th Admission for this child to Inpatient Psychiatric Unit)
12/2008 - Admitted to Seattle Children’s - 2 week admission (4th Admission for this child to Inpatient Psychiatric Unit)
12/2008 - readmit (5th Admission) - Psychiatrist recommended out-of-home placement for safety and health of child and his family. RSN stated “would not approve” readmission again
1/2009 - DDD Region 4 Children’s Manager told client’s DDD caseworker - “Do not offer them anything”
1/2009 - Discharge meeting at Seattle Children’s, DDD Psychologist, DDD caseworker, MD, Teacher, Nurse and discharge planner present. No availability in DDD residential system. Mental Health Residential placement would not be appropriate for him.
When asked about next crisis due to readmission being denied, only solution offered to parents by this group was to
“CALL THE POLICE”
It got worse before it got better:
He now lives at Fircrest, an RHC, he’s safe, happy, well cared for and healthy – a CHOICE that was denied to him for over a year.
Why does DDD want to deny a safe and healthy life to those they are supposed to help?
Saturday, July 17, 2010
The House Where Kathy Lives
MORE THAN JUST A PARTY
Hawaiian theme, marathon kareoke, shy smiles and out-loud laughter, home cooked potluck, old friends, family, professional and regular staff dropping in, and eventually, great giggles from Kathy as she whirled in her dancing wheelchair: The party at Kathy's house started outside on the covered patio, but came inside as breezes blew cooler.Twenty years of familyhood at Elm Hall is something to be celebrated! Though a few residents have moved to other houses, the manager who opened the house and one AC-3 ("attendant counselor" supervisor) along with 3 of the original residents are still there. Elm has been home especially to medically fragile people (with dd); and so it is not surprising that in that time, several have "gone on to watch over us," as" Manager Mom" put it. (I am calling her "Manager Mom" for this post because I have not asked permission to use her name; and though she does manage the staff and their care of residents, her role is very much that of "Mom." She shows the love of a good mom to residents and staff, alike. Somehow, everybody gets what they need. )
Today, for the first time, I heard about the preparation for Elm's opening 20 years ago. From Manager Mom's speech: "One challenge was: How do you find staff who want to work in an area with total care, fragile people, lots of lifting and all wheelchair?" As it turned out, just enough people really wanted to work under those conditions, and they were just the right staff for the job!
This was the beginning of a housing change at Fircrest; and Elm had just been remodeled to accommodate half as many residents as Fircrest had formerly housed together. The conversion to nursing facility would follow soon after. A careful selection process had occurred so that the right folks would be transferring to the new house. They were to move all-together; so, for 3 months, the entire new staff worked side-by-side with their usual caregivers in order "to learn all of their idiosyncrasies, what they needed and liked in their daily routines as well as how to meet all of their medical needs." This also gave the residents time to get to know and trust their new caregivers before changing environments.
When Kathy moved there from another house on campus about 8 years ago, staff were oriented to her very extensive needs in a similar way. Manager Mom first learned every little nuance of her care, wrote procedures and trained staff, often one-on-one, so that Kathy absolutely got what she needed in the way that she liked and needed it. She is loved there and she feels it. She has been truly blessed to have had the same, wonderful manager-habilitation professional (HPA) and direct caregiver team for all of that time. A few have left and a few have taken their places, but turnover with it's accompanying disorientation has been minimal.
Just one parting thought. As a nurse, I know that having family around can be stressful, especially if they are like I am, wanting everything to be perfect for their loved one. On the other hand, as family, it was essential to my peace of mind to be there on a daily basis to be sure the details of Kathy's needs were attended to in the right way. Manager Mom handled me and my daily requests wonderfully, almost always accommodating them and/or helping me understand why not if she could not meet one. Problems never went unsolved. When, eventually, I did not come as often, I had confidence that Kathy was in the hands of people who knew the importance of each task and, truly caring about her as well as feeling supported, themselves, would not short-change her in their hurry to accommodate all the other, equally important needs of everyone else in their care.
As you might have guessed, I am extraordinarily grateful.
Saskia
Wednesday, July 14, 2010
Advocacy Concerns
This is an abbreviated version of an open letter to people who oppose inclusion of Residential Habilitation Centers (RHCs) in the continuum of services for our family and community members who have disabilities. I felt the need to write it after receiving an extremely misleading Action Alert opposing HR 1255 (HR1255 provides a process by which parents & guardians, on behalf of their children/wards, may opt out of class action lawsuits with which they disagree.) Also, I found the documentation they provided in response to my questions to misrepresent the Supreme Court Olmstead Decision. Actually, "Olmstead" does not say that anybody is required to live in a specific place. Instead it affirms the right of an individual to live in the setting that best suits him/her - be it a private home, group home, institution. In so doing, it affirms the role of institutions within a full continuum of care.
I respect the energy and commitment that you all have to your causes. What I don’t understand is how, as strong advocates, (personal and representatives of public agencies) , you can work to deny or diminish services to people with such severe and complex needs within the DD population. I could never envision closing RHCs because I see the necessity for their existence. If you actually went, toured, met and spoke with residents, family members and guardians, you would see that each RHC is a community as well as the community of choice and safety for many people. I believe you would come away recognizing their critical role in our community.
Trying to take this choice away appears to dismiss their residents as not worthy of being safe. I saw this even before our son was in need of the services. When he was eleven, I would not have considered institutional placement for him but I would not have cut that option off for those who needed it. I realize that there is a wide variation of needs and just because one person with DD does not need those services, it does not mean that no person with DD might need them.
As our children age and change, different issues arise. As a parent who has lived through it, I can say that a dual diagnosis changes the whole scenario of needs. Care and supervision for safety becomes extremely complex, demanding and person intensive.
The estimate of the incidence dual diagnosis, (dual diagnosis is developmental disability and a mental illness diagnosis) is between 30-50%. (NADD – An association for persons with developmental disabilities and mental health needs www.thenadd.org). Often in speaking and advocating for people with DD one forgets about this extremely extra complex group of people.
Our son is very active in community events both inside and outside of the RHC. He is a well known participant in the Seattle Parks and Recreation Specialized Program – both the Saturday Activities and Day Camp. He participates in neighborhood celebrations and concerts, attends church every week and many other activities.
I invite you to join me on an RHC tour, to meet him and learn why an RHC is the home of choice for him and others with such complex needs that they can only be managed in an RHC community.
Please, do contact me – I’d love to have a discussion, take people on tours of Fircrest or Frances Haddon Morgan Center, introduce you to my son and talk about how we can come together to truly advocate for ALL people with disabilities.
People may contact me personally at cherylfelak@msn.com
I respect the energy and commitment that you all have to your causes. What I don’t understand is how, as strong advocates, (personal and representatives of public agencies) , you can work to deny or diminish services to people with such severe and complex needs within the DD population. I could never envision closing RHCs because I see the necessity for their existence. If you actually went, toured, met and spoke with residents, family members and guardians, you would see that each RHC is a community as well as the community of choice and safety for many people. I believe you would come away recognizing their critical role in our community.
Trying to take this choice away appears to dismiss their residents as not worthy of being safe. I saw this even before our son was in need of the services. When he was eleven, I would not have considered institutional placement for him but I would not have cut that option off for those who needed it. I realize that there is a wide variation of needs and just because one person with DD does not need those services, it does not mean that no person with DD might need them.
As our children age and change, different issues arise. As a parent who has lived through it, I can say that a dual diagnosis changes the whole scenario of needs. Care and supervision for safety becomes extremely complex, demanding and person intensive.
The estimate of the incidence dual diagnosis, (dual diagnosis is developmental disability and a mental illness diagnosis) is between 30-50%. (NADD – An association for persons with developmental disabilities and mental health needs www.thenadd.org). Often in speaking and advocating for people with DD one forgets about this extremely extra complex group of people.
Our son is very active in community events both inside and outside of the RHC. He is a well known participant in the Seattle Parks and Recreation Specialized Program – both the Saturday Activities and Day Camp. He participates in neighborhood celebrations and concerts, attends church every week and many other activities.
I invite you to join me on an RHC tour, to meet him and learn why an RHC is the home of choice for him and others with such complex needs that they can only be managed in an RHC community.
Please, do contact me – I’d love to have a discussion, take people on tours of Fircrest or Frances Haddon Morgan Center, introduce you to my son and talk about how we can come together to truly advocate for ALL people with disabilities.
People may contact me personally at cherylfelak@msn.com
Friday, June 25, 2010
Tennessee Judge Rules for Families
Guardian/Conservator Authority
To Choose ICF/MR or "community" home
To Choose ICF/MR or "community" home
Excerpts from VOR Weekly E-Update:
"As families prepare for the closure of the Clover Bottom Developmental Center, on May 28, a court ruled in favor of the right (of) individuals and legal guardians to choose another ICF/MR (deemed a “congregate” setting), even when professionals have determined the individuals could be provided (for) in a more integrated setting. "
"The question before the federal district court in Tennessee was whether the Americans with Disabilities Act (ADA) precluded Clover Bottom residents, or their legal guardians, from choosing “congregate care.”
Citing Olmstead and Medicaid law, the Court ruled in favor of the state and families, recognizing the freedom to choose a large ICF/MR placement even if the individual could be appropriately served in a more integrated setting.
“The intersection of citizen choice and the ADA was addressed by the Supreme Court in Olmstead v. L.C.,” wrote the court. “[T]here is no federal requirement under the ADA that community-based treatment must be imposed on citizens who do not desire it.”
The Court was particularly persuaded by the brief of the Parent Guardian Association (PGA), which argued that “Conservators [and guardians] - who have the longest and most meaningful relationship with their loved ones and the greatest investment in their well-being - are in the best position” to weigh all benefits and risks of any placement option, and will give due consideration to the opinion of professionals."
Used by permisson of VOR.
To read the decision, go to: http://www.vor.net/get-help/legal-resources/. (Just click on this blog post's title)
What are your thoughts on the matter? Do you have experience with this dilemma? If so, would you be willing to share it? How does this work in your state? When, (if at all) is placement in the "most integrated setting" as or more important than other considerations such as proximity to needed resources, safety of environment &/or elements that make for least restrictive environment (also a part of the Olmstead ruling)?
Saskia
"As families prepare for the closure of the Clover Bottom Developmental Center, on May 28, a court ruled in favor of the right (of) individuals and legal guardians to choose another ICF/MR (deemed a “congregate” setting), even when professionals have determined the individuals could be provided (for) in a more integrated setting. "
"The question before the federal district court in Tennessee was whether the Americans with Disabilities Act (ADA) precluded Clover Bottom residents, or their legal guardians, from choosing “congregate care.”
Citing Olmstead and Medicaid law, the Court ruled in favor of the state and families, recognizing the freedom to choose a large ICF/MR placement even if the individual could be appropriately served in a more integrated setting.
“The intersection of citizen choice and the ADA was addressed by the Supreme Court in Olmstead v. L.C.,” wrote the court. “[T]here is no federal requirement under the ADA that community-based treatment must be imposed on citizens who do not desire it.”
The Court was particularly persuaded by the brief of the Parent Guardian Association (PGA), which argued that “Conservators [and guardians] - who have the longest and most meaningful relationship with their loved ones and the greatest investment in their well-being - are in the best position” to weigh all benefits and risks of any placement option, and will give due consideration to the opinion of professionals."
Used by permisson of VOR.
To read the decision, go to: http://www.vor.net/get-help/legal-resources/. (Just click on this blog post's title)
What are your thoughts on the matter? Do you have experience with this dilemma? If so, would you be willing to share it? How does this work in your state? When, (if at all) is placement in the "most integrated setting" as or more important than other considerations such as proximity to needed resources, safety of environment &/or elements that make for least restrictive environment (also a part of the Olmstead ruling)?
Saskia
Saturday, March 20, 2010
Discrimination by Arc Against RHC Residents?
This article was submitted by Pandiecats. In it, she elaborates on comments she made in response to the article entitled RHC &/OR Community" Arc & A Family Who Knows Both. (To read it, click article name in side list: 3/18/2010)
Pandiecats: The Arc of Washington has banned me from their Facebook group. They also won't post anything from me on their blog. I have been banned!
This is the ARC’s mission statement : " The Arc of Washington State has advocated since 1936 for the rights and full participation of all people with developmental disabilities. Along with our network of members and chapters, we support and empower individuals and families; connect and inform individuals and families; improve support and service systems; influence public policy; increase public awareness; and inspire inclusive communities. Our Vision is for a world where people with developmental disabilities are included in their communities and neighborhoods and where quality supports and services respond to their needs and personal choices."
This is the last letter that I posted and I think they just got sick of me talking about things that are not on their agenda - I wish they would stand behind their mission statement!
"I'm very frustrated by the tactics of some advocates for the disabled. I have sent this letter to several Senators regarding my opinion. Hopefully, some will see the discrimination tactics and think of real people and not politics.
I have attached a flyer regarding our son, Thomas. He is a resident at Frances Haddon Morgan Center. I understand there are a lot of issues and politics surrounding the use of RHCs for our disabled. The ARC has done a good job of focusing on our disabled family members that are able to live in a residential setting, but in advocating for those people, they have alienated the segment of the disabled community for which a residential setting is not safe or appropriate. The ARC has employed a divide and conquer strategy to advocacy for the disabled.
I used to be a supporter of the ARC until I realized the discrimination that they promote. Even prior to our son needing to live in a RHC and even before having a disabled child, I could see the benefits of maintaining RHCs, so my opinion is not based on the fact that our son lives there. I do not understand why people who are advocates for our disabled are trying to take away the very supports that are needed to help our family members be successful and part of the community.
Yes, even living in a RHC is part of the community! It actually enables many to be more active than if they lived in a group home."
Well, they have not heard the last of this - I am going to make this discrimination well known. I'm sick of people deciding what is best for others. I had written on the ARC blog and the policy person responded with a short-sighted posting about choices and in an "institution" people couldn't make choices like what they want to eat or what color to paint their room. I'm sorry but WHO CARES about that when safety is at stake. I wrote a response to her defensive posting but when I went to post it, my first one had been removed. I questioned the lady in a private email - this is her response:
"It was brought to my attention that the comments were not related to the blog article, which was focused on revenue options being considered by the legislature. In the future, please make sure your comments are about the blog article. Thanks!"
I then tried to post it to the next Blog article posting (which actually talked about Frances Haddon Morgan Center) and said that my letter did pertain to what the blog article focused on. It has not been posted (I'm not surprised)
So anyhow - on to more letter writing! We need to get the word spread about the discrimination against some of our disabled community members.
Pandiecats
Pandiecats: The Arc of Washington has banned me from their Facebook group. They also won't post anything from me on their blog. I have been banned!
This is the ARC’s mission statement : " The Arc of Washington State has advocated since 1936 for the rights and full participation of all people with developmental disabilities. Along with our network of members and chapters, we support and empower individuals and families; connect and inform individuals and families; improve support and service systems; influence public policy; increase public awareness; and inspire inclusive communities. Our Vision is for a world where people with developmental disabilities are included in their communities and neighborhoods and where quality supports and services respond to their needs and personal choices."
This is the last letter that I posted and I think they just got sick of me talking about things that are not on their agenda - I wish they would stand behind their mission statement!
"I'm very frustrated by the tactics of some advocates for the disabled. I have sent this letter to several Senators regarding my opinion. Hopefully, some will see the discrimination tactics and think of real people and not politics.
I have attached a flyer regarding our son, Thomas. He is a resident at Frances Haddon Morgan Center. I understand there are a lot of issues and politics surrounding the use of RHCs for our disabled. The ARC has done a good job of focusing on our disabled family members that are able to live in a residential setting, but in advocating for those people, they have alienated the segment of the disabled community for which a residential setting is not safe or appropriate. The ARC has employed a divide and conquer strategy to advocacy for the disabled.
I used to be a supporter of the ARC until I realized the discrimination that they promote. Even prior to our son needing to live in a RHC and even before having a disabled child, I could see the benefits of maintaining RHCs, so my opinion is not based on the fact that our son lives there. I do not understand why people who are advocates for our disabled are trying to take away the very supports that are needed to help our family members be successful and part of the community.
Yes, even living in a RHC is part of the community! It actually enables many to be more active than if they lived in a group home."
Well, they have not heard the last of this - I am going to make this discrimination well known. I'm sick of people deciding what is best for others. I had written on the ARC blog and the policy person responded with a short-sighted posting about choices and in an "institution" people couldn't make choices like what they want to eat or what color to paint their room. I'm sorry but WHO CARES about that when safety is at stake. I wrote a response to her defensive posting but when I went to post it, my first one had been removed. I questioned the lady in a private email - this is her response:
"It was brought to my attention that the comments were not related to the blog article, which was focused on revenue options being considered by the legislature. In the future, please make sure your comments are about the blog article. Thanks!"
I then tried to post it to the next Blog article posting (which actually talked about Frances Haddon Morgan Center) and said that my letter did pertain to what the blog article focused on. It has not been posted (I'm not surprised)
So anyhow - on to more letter writing! We need to get the word spread about the discrimination against some of our disabled community members.
Pandiecats
Thursday, March 18, 2010
RHC &/or Community: Arc & A Family Who Knows Both
Summarized, below, is an email exchange which vividly illustrates both sides of the dispute over RHCs. It was provided by the family of 2 people with dd: one, Jason, a child living at home with his parents, the other a sibling, David C., who lives successfully in an RHC. After the introductory note by the child's mother, the summary represents their correspondence with the Policy & Advocacy Coordinator of Arc of WA. state.
"Good Morning.
I am forwarding to you the following e-mail conversation that David C's family has had recently with the Arc in response to their “Call to Action” against this state's RHCs.
I am the mother of Jason, an eight and a half year old with Down syndrome, who is also in treatment for leukemia, and David C’s sister.
I know personally the differences in what was available to my parents (for David) and what my family has available for my son. My husband and I have received limited help from the State of Washington. Jason has had “birth to three,” preschool and now is in first grade/life skills at our local elementary school. Our average annual cost for his medical and therapy is approximately $15,000.00. Are we complaining? No. We are his parents and we gladly take on the responsibility. As a family, we know that keeping David safe and sound is worth the sacrifice.
It is hard to go to different local events and hear parents complaining that they only get 16 hours a week of personal care for their three year old with Down syndrome. Isn’t that covered under “parenting?” I asked one mom, who is a close personal friend and very active in the Arc of Whatcom County, "When is enough, enough? When your child receives a million dollars a year in programs?"
"I think my family will say “No Thank You” to their offer to help us "find appropriate community placement for David."
by Dorene M.
***
The "call to Action," to which Dorene refers, referenced "compelling personal stories" to legislators by RHC families and guardians, describing the need for RHCs. The call to action exhorted readers to write their own stories of why the "community" is important to them and send them to Arc of Wa. for distribution to legislators.
Implying that RHC residents were utilizing more than their fair share of resources, the call to action referenced "18,000" people with dd, who, it claimed, receive no paid services and 940 people living in RHCs, leaving only 79% of the dd budget for 97% of the state's population with DD. (or 3% use 21%) It also claimed that "12" states had closed their "state institutions for DD" and predicted that all the others would be closing theirs over the next few years. Without context, it also referred to downsizing having been occurring since a 1970 "peak" of "4,200". Refuting RHC advocates' beliefs that RHCs are the only possible placement for current RHC residents, it stated without mentioning the cost, "Many individuals with more significant medical needs and disabilities are living fulfilling lives in the community."
***
David C.’s brother, Dan, replied to the call to action.
"I was disturbed to read the call to action that was forwarded by an Arc member to my family. I believe my family has a unique perspective and opinion on the benefits of RHCs as well as the cost struggles for individuals with developmental disabilities who live in the community. I have a 40 year old brother who resides at Fircrest in Shoreline and an 8 year old nephew with Down Syndrome who lives in Bellingham. I represent my family.
The Fircrest of today and the last 25 years is not the Fircrest of the 1970s and 80s by the simple fact that those who are able to thrive in the community have been placed in the community. I have spoken with former residents who were placed there during that time period, and I agree that they are able to live and thrive in the community. That is not the state of the residents who live there today. Level of care, stability, and the safety of constant state supervision has been proven necessary. The disruption of consolidation and closure of RHCs in the last 10 years has even led to deaths in this very fragile population. Also, the number of individuals in RHCs has dwindled (only) because the state has not allowed new residents for years, even though there are individuals who could benefit from living in this type of environment.
On the other side of the spectrum, my sister's son, Jason, has Down Syndrome, receives no state/government assistance, and lives at home with his parents. Over the 8 years of his life, he has had heart surgeries, spent time in extensive therapy, and has battled leukemia. My sister and her husband spend thousands of dollars each year privately, but even with the personal struggle to their household, they understand and support the use of RHCs.
I struggle with the notion that the money saved from RHCs will be passed on to citizens with disabilities that live in the community. First, with a $1.5B budget deficit, any money the state saves by closing RHCs will go back into the general fund. Second, I have not seen data that supports the notion that the level of care that residents in RHCs require would be less expensive by moving them to the community. 24 hour supervision, daily medical care, room, board, and additional transportation services will be just as costly. Third, once the RHCs are closed, what is to stop community group homes and residences' employees from organizing into unions, thus increasing the cost to the state through increased benefits. Finally, over half of the cost of RHCs is provided by the Federal Government through Social Security. My brother, being one of the younger residents at 40, receives Social Security benefits through my parents. This is the case for many residents since their parents are older in age or deceased.
Over the years, my mother has met and spoken to many state legislators about Fircrest, even providing visits. These visits and conversations change opinions and attitudes. I extend the offer to you. Any one of us would be willing to talk and arrange a visit to Fircrest so that you can witness, first hand, the care, stability, and safety these very fragile state citizens receive. Again, I sympathize with struggles parents and loved ones with developmental disabilities endure, but taking needed benefits away from one, with no guarantee of giving it to another is not the answer. I and my family would appreciate a response to this e-mail.
Thank you.
Dan C (David C's brother, Jason M's uncle), Dean and Dorothy C (David C’s parents, Jason M's grandparents), Dorene and Dave M (Jason M's parents, David C's sister) and Deanna Z (David C's sister, Jason M's aunt)
***
After 10 days, Dan wrote, again, requesting a response. In that letter, he said, "I don't dispute that there are severely disabled Washington State citizens that live in our communities (in fact some might even thrive in an RHC setting). My concern is that the call to action does not represent the reality of individuals living in RHCs TODAY, and the implied assumption that the funding issues can be addressed through a blanket 'everyone needs to/can fit into the community.' "
***
He received a reply from her that she was busy, but she was "more than willing to talk with" him and would reply. She also shared that she has a teenage son with autism and her perspective is that of a single mother..
***
She wrote again March 8, 22 days after Dan's original letter.
As had her preceding note, the end of her letter contained the following disclaimer: (Bold print by this editor)
"The information contained in this email is for informational purposes only and should be evaluated by each recipient for content accuracy and applicability. It is not intended to represent the viewpoint of The Arc of Washington State."
Her letter was prefaced as follows: (Bold print by this editor) "It may help to understand that The Arc of Washington follows policy guidelines set by The Arc of the United States. I am not responding to your letter with personal opinions, but rather with policies in place for our organization."
Some of what Dan had written was not addressed. She acknowledged Dan's views as his "perspective." Referring him to videos on the Arc web site, she told him that others who had had similar, strong feelings had changed their minds. Re: the disposition of any RHC closure savings, whether to the general fund or to service-deprived "community" residents with dd, she assured that the bills Arc supports would direct them to community dd residents. Without mentioning that the "community" matching federal funds are considerably less than to RHCs, she said that Home and Community Based Services Waivers also receive a federal match. Non-specifically, she also mentioned that documents produced by DSHS deny that there have been deaths resulting from "moves from an RHC."
She said, " We have worked for years to advocate for better services in the community and believe it is past time for our state to begin the process of closing an antiquated model in segregated living and focus more on the best practices of community living." (bold print by this editor) Also, saying that "adult family homes and group homes are not appropriate placements for the population we serve," she stated: "Those who tried community settings in the past that failed often had an inappropriate placement." She advocated SOLAs (State Operated Living Alternatives.)
She closed by saying the Action Alert that they had received had been intended to provide stories to convince families such as David C's of community successes even with the "most significant disabilities" and offered to help him find community placement for his brother!
In his reply, Dan thanked her and promised to compare Arc's website material with his personal investigation. Having already viewed some of the videos, he said, in his experience, they were not representative of people at Fircrest of today. He closed, saying, "Just be aware that the Arc does not represent all families with developmental disabilities and actually drives divisiveness. Imagine what could be accomplished if the Arc wasn't trying to rob Peter to pay Paul." (Bold print by this editor)
***
So, what do you agree or disagree with and why? .................Saskia
"Good Morning.
I am forwarding to you the following e-mail conversation that David C's family has had recently with the Arc in response to their “Call to Action” against this state's RHCs.
I am the mother of Jason, an eight and a half year old with Down syndrome, who is also in treatment for leukemia, and David C’s sister.
I know personally the differences in what was available to my parents (for David) and what my family has available for my son. My husband and I have received limited help from the State of Washington. Jason has had “birth to three,” preschool and now is in first grade/life skills at our local elementary school. Our average annual cost for his medical and therapy is approximately $15,000.00. Are we complaining? No. We are his parents and we gladly take on the responsibility. As a family, we know that keeping David safe and sound is worth the sacrifice.
It is hard to go to different local events and hear parents complaining that they only get 16 hours a week of personal care for their three year old with Down syndrome. Isn’t that covered under “parenting?” I asked one mom, who is a close personal friend and very active in the Arc of Whatcom County, "When is enough, enough? When your child receives a million dollars a year in programs?"
"I think my family will say “No Thank You” to their offer to help us "find appropriate community placement for David."
by Dorene M.
***
The "call to Action," to which Dorene refers, referenced "compelling personal stories" to legislators by RHC families and guardians, describing the need for RHCs. The call to action exhorted readers to write their own stories of why the "community" is important to them and send them to Arc of Wa. for distribution to legislators.
Implying that RHC residents were utilizing more than their fair share of resources, the call to action referenced "18,000" people with dd, who, it claimed, receive no paid services and 940 people living in RHCs, leaving only 79% of the dd budget for 97% of the state's population with DD. (or 3% use 21%) It also claimed that "12" states had closed their "state institutions for DD" and predicted that all the others would be closing theirs over the next few years. Without context, it also referred to downsizing having been occurring since a 1970 "peak" of "4,200". Refuting RHC advocates' beliefs that RHCs are the only possible placement for current RHC residents, it stated without mentioning the cost, "Many individuals with more significant medical needs and disabilities are living fulfilling lives in the community."
***
David C.’s brother, Dan, replied to the call to action.
"I was disturbed to read the call to action that was forwarded by an Arc member to my family. I believe my family has a unique perspective and opinion on the benefits of RHCs as well as the cost struggles for individuals with developmental disabilities who live in the community. I have a 40 year old brother who resides at Fircrest in Shoreline and an 8 year old nephew with Down Syndrome who lives in Bellingham. I represent my family.
The Fircrest of today and the last 25 years is not the Fircrest of the 1970s and 80s by the simple fact that those who are able to thrive in the community have been placed in the community. I have spoken with former residents who were placed there during that time period, and I agree that they are able to live and thrive in the community. That is not the state of the residents who live there today. Level of care, stability, and the safety of constant state supervision has been proven necessary. The disruption of consolidation and closure of RHCs in the last 10 years has even led to deaths in this very fragile population. Also, the number of individuals in RHCs has dwindled (only) because the state has not allowed new residents for years, even though there are individuals who could benefit from living in this type of environment.
On the other side of the spectrum, my sister's son, Jason, has Down Syndrome, receives no state/government assistance, and lives at home with his parents. Over the 8 years of his life, he has had heart surgeries, spent time in extensive therapy, and has battled leukemia. My sister and her husband spend thousands of dollars each year privately, but even with the personal struggle to their household, they understand and support the use of RHCs.
I struggle with the notion that the money saved from RHCs will be passed on to citizens with disabilities that live in the community. First, with a $1.5B budget deficit, any money the state saves by closing RHCs will go back into the general fund. Second, I have not seen data that supports the notion that the level of care that residents in RHCs require would be less expensive by moving them to the community. 24 hour supervision, daily medical care, room, board, and additional transportation services will be just as costly. Third, once the RHCs are closed, what is to stop community group homes and residences' employees from organizing into unions, thus increasing the cost to the state through increased benefits. Finally, over half of the cost of RHCs is provided by the Federal Government through Social Security. My brother, being one of the younger residents at 40, receives Social Security benefits through my parents. This is the case for many residents since their parents are older in age or deceased.
Over the years, my mother has met and spoken to many state legislators about Fircrest, even providing visits. These visits and conversations change opinions and attitudes. I extend the offer to you. Any one of us would be willing to talk and arrange a visit to Fircrest so that you can witness, first hand, the care, stability, and safety these very fragile state citizens receive. Again, I sympathize with struggles parents and loved ones with developmental disabilities endure, but taking needed benefits away from one, with no guarantee of giving it to another is not the answer. I and my family would appreciate a response to this e-mail.
Thank you.
Dan C (David C's brother, Jason M's uncle), Dean and Dorothy C (David C’s parents, Jason M's grandparents), Dorene and Dave M (Jason M's parents, David C's sister) and Deanna Z (David C's sister, Jason M's aunt)
***
After 10 days, Dan wrote, again, requesting a response. In that letter, he said, "I don't dispute that there are severely disabled Washington State citizens that live in our communities (in fact some might even thrive in an RHC setting). My concern is that the call to action does not represent the reality of individuals living in RHCs TODAY, and the implied assumption that the funding issues can be addressed through a blanket 'everyone needs to/can fit into the community.' "
***
He received a reply from her that she was busy, but she was "more than willing to talk with" him and would reply. She also shared that she has a teenage son with autism and her perspective is that of a single mother..
***
She wrote again March 8, 22 days after Dan's original letter.
As had her preceding note, the end of her letter contained the following disclaimer: (Bold print by this editor)
"The information contained in this email is for informational purposes only and should be evaluated by each recipient for content accuracy and applicability. It is not intended to represent the viewpoint of The Arc of Washington State."
Her letter was prefaced as follows: (Bold print by this editor) "It may help to understand that The Arc of Washington follows policy guidelines set by The Arc of the United States. I am not responding to your letter with personal opinions, but rather with policies in place for our organization."
Some of what Dan had written was not addressed. She acknowledged Dan's views as his "perspective." Referring him to videos on the Arc web site, she told him that others who had had similar, strong feelings had changed their minds. Re: the disposition of any RHC closure savings, whether to the general fund or to service-deprived "community" residents with dd, she assured that the bills Arc supports would direct them to community dd residents. Without mentioning that the "community" matching federal funds are considerably less than to RHCs, she said that Home and Community Based Services Waivers also receive a federal match. Non-specifically, she also mentioned that documents produced by DSHS deny that there have been deaths resulting from "moves from an RHC."
She said, " We have worked for years to advocate for better services in the community and believe it is past time for our state to begin the process of closing an antiquated model in segregated living and focus more on the best practices of community living." (bold print by this editor) Also, saying that "adult family homes and group homes are not appropriate placements for the population we serve," she stated: "Those who tried community settings in the past that failed often had an inappropriate placement." She advocated SOLAs (State Operated Living Alternatives.)
She closed by saying the Action Alert that they had received had been intended to provide stories to convince families such as David C's of community successes even with the "most significant disabilities" and offered to help him find community placement for his brother!
In his reply, Dan thanked her and promised to compare Arc's website material with his personal investigation. Having already viewed some of the videos, he said, in his experience, they were not representative of people at Fircrest of today. He closed, saying, "Just be aware that the Arc does not represent all families with developmental disabilities and actually drives divisiveness. Imagine what could be accomplished if the Arc wasn't trying to rob Peter to pay Paul." (Bold print by this editor)
***
So, what do you agree or disagree with and why? .................Saskia
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