Among those of us who care deeply for and about people with developmental disabilities, I hope to hear emerge a new voice, ours, rising together for the benefit of all, harmonizing with reason, respect and hope, and transcending divisions, giving birth to a new era of creative cooperation.

Toward this potential, DD EXCHANGE is for conversation, civil sounding off, sharing of stories, experience, information, resources, and inspiration, giving and receiving support, and creative problem solving.

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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