April 8, 2016: Response by Cheryl Felak to Frame invitation for Viewer Comment Story
Hi Susannah,
I realize that I have sent you several letters in the past few days. Please, if you have any questions about any of the information I would be more than happy to answer them.
One last issue that I would like to pass along for the sake of transparency and that is concerning the cost of care. As you may recall, my son has just recently moved out of Fircrest into a supported living home. The information on the cost of his care is just starting to come in an I am not surprised at all. I knew that it would be expensive for his care in the community and I am right. But, then again, the care is better and of a higher quality.
Thomas lives in a supported living home. The agency receives $418.15 a day for his care. The nurse delegator receives $26.58 per day. These two expenses come to $13.786.65 per month or $165,439 per year. On top of this, my son needs to pay his own rent from his Social Security ( a rent that is subsidized by HUD), buy his own food (but he will receive food stamps). He will utilize his medical and mental health care providers in the community – billed to our insurance and Apple Health and his medications and incontinent supplies will also be paid for by Apple Health. Adding all these costs up his annual cost of care in the community will be greater than that of the cost of care in the RHC.
Interesting to note is that the Shoreline Police have already been called to his home due to being hit by another resident. There was no fault but only caused by the excitement of two adult sized men who have the emotional maturity of 2 year olds and often their communication involves swinging of the arms or hitting. My son was hit in the head and had a bruise on his ear. It was not a serious injury at all and there was no blame but it is the law that the police are notified and a report is filed. In all honestly this was much less of an issue than some of the injuries he had while at the RHC but I am not aware if the police need to be notified of all injuries for client-to-client “assaults”. At any rate, this does show the increased cost to the community when other agencies need to respond and support these folks.
I am writing this to you so that you are aware that it is NOT LESS expensive for those with high support needs to live in the community. The care is better, the health care meets standards, the providers work with the guardians and include them in correspondence and collaborate - to me that is worth the extra cost of care.
We need to be honest about what the real story is. If the RHCs closed and others (many with higher support needs than my son) moved to the community there would be a huge cost increase. To report otherwise is misleading and negligent.
Thank you again for the work you did on the series.
Cheryl
Cheryl Felak, RN, BSN
Sunday, April 10, 2016
"CRUEL MYTH:" Glories of Community Placements for EVERYONE with IDD
April 10, 2016: Written by Leone McMullen in response to Frame invitation for story based solely on viewer comments.
Dear Ms. Frame,
We are deeply disturbed that King5 continues to air this series, one dreadfully inaccurate segment after another.
Your emphasis on the glories of community placements for EVERYONE with developmental disabilities is for many, a cruel myth.
Our daughter Amika is a case-in-point: In the last 18 years, she has been moved in-and-out of Eight different community living agencies. (Here are a few: Share &Care, Walsh & Assoc., Aacres Alvest, Service Alternatives, CARR, CenterPoint, Stand together).
Most were substandard at best, failed to meet her needs, and only one, (Stand Together), was even partially successful. The rest left her with enormous physical and mental scars, which will never heal. And we never slept.
While DDD struggled to find still-another placement for Amika, she spent time at Fircrest. We noticed how much better she did while living there. The secure campus, in house doctors, psychologist, and plentiful staff gave her the security she so longed-for.
During community placement, Amika was kidnapped, sexually assaulted, arrested, cost the city of Kent $100,000 in first-responder costs,(the agency called police constantly, even for minor problems), lived in dangerous places, constantly eloped, food stolen by staff, etc. etc.
She is now a permanent resident of Fircrest. She is secure, there is no police involvement, no dangerous elopements. We sleep every night.
We do not know why you have such a skewed view of Fircrest and the other RHCs. But we DO know, that for many people, and their families, they are life-saving.
We have watched KING5 literally all of our lives. Always trusted for accurate news coverage. After watching this series, with it's clear bias and inaccuracies, our trust is gone. We will never again view KING5 reporting as accurate.
Please publish this email with other comments on this series.
Leone and Mac McMullen
Dear Ms. Frame,
We are deeply disturbed that King5 continues to air this series, one dreadfully inaccurate segment after another.
Your emphasis on the glories of community placements for EVERYONE with developmental disabilities is for many, a cruel myth.
Our daughter Amika is a case-in-point: In the last 18 years, she has been moved in-and-out of Eight different community living agencies. (Here are a few: Share &Care, Walsh & Assoc., Aacres Alvest, Service Alternatives, CARR, CenterPoint, Stand together).
Most were substandard at best, failed to meet her needs, and only one, (Stand Together), was even partially successful. The rest left her with enormous physical and mental scars, which will never heal. And we never slept.
While DDD struggled to find still-another placement for Amika, she spent time at Fircrest. We noticed how much better she did while living there. The secure campus, in house doctors, psychologist, and plentiful staff gave her the security she so longed-for.
During community placement, Amika was kidnapped, sexually assaulted, arrested, cost the city of Kent $100,000 in first-responder costs,(the agency called police constantly, even for minor problems), lived in dangerous places, constantly eloped, food stolen by staff, etc. etc.
She is now a permanent resident of Fircrest. She is secure, there is no police involvement, no dangerous elopements. We sleep every night.
We do not know why you have such a skewed view of Fircrest and the other RHCs. But we DO know, that for many people, and their families, they are life-saving.
We have watched KING5 literally all of our lives. Always trusted for accurate news coverage. After watching this series, with it's clear bias and inaccuracies, our trust is gone. We will never again view KING5 reporting as accurate.
Please publish this email with other comments on this series.
Leone and Mac McMullen
Collectively Prohibitive Community-At-Large High Support Needs Costs
April 7, 2016 Response by Cheryl Felak to Frame invitation for story to feature Viewer Comments
Dear Susannah,
I also wanted to add one additional issue that is often misunderstood. One of the arguments that is heard is that people who advocate for RHCs say that their loved ones are “too fragile” or “too disabled” to live in the community. It is not the medical fragility or disability that prohibits the person from living in the “community” but the cost of care and restrictions to the family when there is a person with extremely high support needs.
For instance, during the Developmental Disabilities Task Force meetings that were held in 2012 this very issue was raised. Lance Moorehouse, then The Arc of King County Parent Coalition Coordinator spoke about having his disabled son living in their family home.as proof of the fact that those with high support needs can live in the community. Mr. Moorehouse then stated that his son had 19 hours a day of 1:1 nursing care for 17 years that was provided by the Home and Community Based Service Wavier. The cost of this care is great – certainly much higher than the same care in the RHC yet there was no one telling Mr. Moorehouse that he needed to move his son to what they believed was a less expensive option or one that was against their personal choice. Mr Moorehouse was not being condemned as being evil or selfish by taking more than his share and therefore making it impossible for others to have any services. Yet this is the treatment that families of RHC residents receive from so-called advocates. The choice of families such as Mr. Moorehouse’ are honored ( as long as there are providers) just as the choice of families who choose to have their loved ones live in a campus community and share services and costs should be honored.
The Arc of King County (the agency which employed Mr. Moorehouse at the time of the DD Task Force) is one such agency which advocates for closure of the RHCs based on costs. It is clear just from this one example that the cost of care for some of the people with high support needs is something that needs to be looked at more closely. The cost of care for these individuals is well above the “average” cost reported and used as a cost of care analysis for moving RHC residents to scattered community settings. Continuing to use the average cost of care gives a very skewed representation of the actual costs that would be needed if such an endeavor to close the RHC was undertaken. If we based the budget on this average it would mean disaster to services and supports for those who live with intellectual and developmental disabilities.
The advocates who support the RHCs and campus community settings do so for many reasons. They are also being more realistic in what can be accomplished financially in community at large settings for those with high support needs. If we were to advocate for all people with very high support needs to live in a family home, the cost of care would be astronomical. In theory all people, no matter what their support level, can live in a community home. In reality, this goal is unattainable and cost prohibitive.
I am including links to three letters that I wrote in 2012 to the Developmental Disabilities Task Force. These same issues continue to be current. When I heard that you were doing an investigative series I had hope that these issues of a monopoly, conflicts of interest and biased reports would be exposed. I’m sorry to say that the series was more of the same and an advertisement for The Arc and their viewpoint.
https://becausewecare1.files.wordpress.com/2012/09/dear-friends-and-collegues.pdf
https://becausewecare1.files.wordpress.com/2012/09/dear-dd-task-force-september-20-2012.pdf
https://becausewecare1.files.wordpress.com/2012/09/september-25-letter-to-dd-task-force.pdf
Please feel free to publish this letter. Thank you for your interest.
Cheryl
Cheryl Felak, RN, BSN
Dear Susannah,
I also wanted to add one additional issue that is often misunderstood. One of the arguments that is heard is that people who advocate for RHCs say that their loved ones are “too fragile” or “too disabled” to live in the community. It is not the medical fragility or disability that prohibits the person from living in the “community” but the cost of care and restrictions to the family when there is a person with extremely high support needs.
For instance, during the Developmental Disabilities Task Force meetings that were held in 2012 this very issue was raised. Lance Moorehouse, then The Arc of King County Parent Coalition Coordinator spoke about having his disabled son living in their family home.as proof of the fact that those with high support needs can live in the community. Mr. Moorehouse then stated that his son had 19 hours a day of 1:1 nursing care for 17 years that was provided by the Home and Community Based Service Wavier. The cost of this care is great – certainly much higher than the same care in the RHC yet there was no one telling Mr. Moorehouse that he needed to move his son to what they believed was a less expensive option or one that was against their personal choice. Mr Moorehouse was not being condemned as being evil or selfish by taking more than his share and therefore making it impossible for others to have any services. Yet this is the treatment that families of RHC residents receive from so-called advocates. The choice of families such as Mr. Moorehouse’ are honored ( as long as there are providers) just as the choice of families who choose to have their loved ones live in a campus community and share services and costs should be honored.
The Arc of King County (the agency which employed Mr. Moorehouse at the time of the DD Task Force) is one such agency which advocates for closure of the RHCs based on costs. It is clear just from this one example that the cost of care for some of the people with high support needs is something that needs to be looked at more closely. The cost of care for these individuals is well above the “average” cost reported and used as a cost of care analysis for moving RHC residents to scattered community settings. Continuing to use the average cost of care gives a very skewed representation of the actual costs that would be needed if such an endeavor to close the RHC was undertaken. If we based the budget on this average it would mean disaster to services and supports for those who live with intellectual and developmental disabilities.
The advocates who support the RHCs and campus community settings do so for many reasons. They are also being more realistic in what can be accomplished financially in community at large settings for those with high support needs. If we were to advocate for all people with very high support needs to live in a family home, the cost of care would be astronomical. In theory all people, no matter what their support level, can live in a community home. In reality, this goal is unattainable and cost prohibitive.
I am including links to three letters that I wrote in 2012 to the Developmental Disabilities Task Force. These same issues continue to be current. When I heard that you were doing an investigative series I had hope that these issues of a monopoly, conflicts of interest and biased reports would be exposed. I’m sorry to say that the series was more of the same and an advertisement for The Arc and their viewpoint.
https://becausewecare1.files.wordpress.com/2012/09/dear-friends-and-collegues.pdf
https://becausewecare1.files.wordpress.com/2012/09/dear-dd-task-force-september-20-2012.pdf
https://becausewecare1.files.wordpress.com/2012/09/september-25-letter-to-dd-task-force.pdf
Please feel free to publish this letter. Thank you for your interest.
Cheryl
Cheryl Felak, RN, BSN
Correcting Frame Attacks & Misrepresentations: Unions, Campus Communities, Segregation, Advocacy Agency/Vendor Conflicts of Interest
April 6, 2016 Response by Cheryl Felak to Frame invitation for story based on Viewer Comments
Dear Susannah,
I have some additional comments and concerns regarding the issues that you have raised in your series “The Last of the Institutions.”
It appears that there is a consistent theme of attacking the RHCs for having union employees. It needs to be pointed out that all the Individual Providers under contract with DDA are members of SEIU 779. Also care givers from First Choice and ResCare have also joined this union. What is the motive for the attack on the union employees? Is it because they have benefits? If so, why is that so bad?
There is a national movement among families and people who live with intellectual disabilities to support campus communities and intentional communities. I urge you to read “Who is my Neighbor” and “Intentional Communities” for more information on residential options that many advocates are developing. We need to have more options not less and closing the RHCs reduces many of the options and also reduces the availability of crisis supports. See #ChoiceFirst and #increaseoptionsdecreasebarriersnow for more information on the nationwide movement to promote alternatives, campus living and intentional communities.
You and others speak of segregation without realizing that many families and individuals are segregated in their own homes and apartments. Not having the ability to go out, to work, to meet with other friends because they are locked inside their homes with no support. This is real segregation that needs to be highlighted. There is no such segregation such as this occurring at the RHCs.
Catering to the vendors is not the same as advocating for people with intellectual and developmental disabilities. There is a major conflict of interest when some of these advocacy agencies gain much of their income from providing residential services. Is this an advocacy agency which is really looking out for the people or for issues of its own gain hidden behind the cloak of advocacy?
Please feel free to publsh.
Cheryl
Cheryl Felak, RN, BSN
Dear Susannah,
I have some additional comments and concerns regarding the issues that you have raised in your series “The Last of the Institutions.”
It appears that there is a consistent theme of attacking the RHCs for having union employees. It needs to be pointed out that all the Individual Providers under contract with DDA are members of SEIU 779. Also care givers from First Choice and ResCare have also joined this union. What is the motive for the attack on the union employees? Is it because they have benefits? If so, why is that so bad?
There is a national movement among families and people who live with intellectual disabilities to support campus communities and intentional communities. I urge you to read “Who is my Neighbor” and “Intentional Communities” for more information on residential options that many advocates are developing. We need to have more options not less and closing the RHCs reduces many of the options and also reduces the availability of crisis supports. See #ChoiceFirst and #increaseoptionsdecreasebarriersnow for more information on the nationwide movement to promote alternatives, campus living and intentional communities.
You and others speak of segregation without realizing that many families and individuals are segregated in their own homes and apartments. Not having the ability to go out, to work, to meet with other friends because they are locked inside their homes with no support. This is real segregation that needs to be highlighted. There is no such segregation such as this occurring at the RHCs.
Catering to the vendors is not the same as advocating for people with intellectual and developmental disabilities. There is a major conflict of interest when some of these advocacy agencies gain much of their income from providing residential services. Is this an advocacy agency which is really looking out for the people or for issues of its own gain hidden behind the cloak of advocacy?
Please feel free to publsh.
Cheryl
Cheryl Felak, RN, BSN
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