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

Seminar Notice: People with DD & Alzheimers

Press release submitted by Tami S Seitz 3/15/10 (Excerpted)
(http://qconline.com/archives/qco/display.php?id=483980)

MOLINE, IL:
"Alzheimer's disease is increasing among persons with developmental disabilities, particularly those with Down Syndrome. It must be considered a terminal condition that presents numerous challenges to provider organizations, families and friends of those who are affected" explains WIU Special Education Professor Don Healy.

An educational seminar sponsored by the Alzheimer's Association–Greater Iowa and Illinois Chapters and the Rehabilitation Research and Training Center on Aging with Developmental Disabilities will be held at the Western Illinois University-Quad Cities campus Wednesday, March 24. Cost to attend the morning session is $30, while there is no charge for the afternoon session. CEUs (3.5) in continuing nurse education are available for an additional $10. The event, co-hosted by the University of Illinois, Chicago, is part of The Professional Training Institute 2010 Programs.To register, call (847) 933-2413.

From Mainstreaming to Specialty School?

Could this proposal have merit?

By Carl Orth | The Suncoast News NEW CHARTER SCHOOL (excerpts)
Published: March 6, 2010
HUDSON - Potential is a terrible thing to waste. So Emile Laurino hopes his concept for a new charter school will go to the head of the class. Families are looking for a different approach to education for their children with developmental disabilities, according to an "action plan" for the charter school. " They want something different than the traditional classroom," Laurino explained in the statement. "Once they graduate from school they want to go to work; they want to provide service and help others; they want to be an integral part of their community."
Laurino, the chief executive officer for the Center for Independence in Hudson, believes such a school could cater to teens and young adults with developmental disabilities ages 16 to 22. "Young adults preparing themselves to go out into the world of work" is how Laurino sums up the mission of the proposed educational facility "I'm hearing more and more" the need exists to fill this educational void", Laurino said.

"If enough people show an interest, the Center for Independence would work toward setting up the specialized school as a separate nonprofit corporation with its own board of directors," Laurino said. As a charter institution, the Center's school would be privately operated, but would be under the supervision of the Pasco County School District. Laurino, his staff and board members of the Center for Independence already belong to many community groups, including Seven Springs Rotary Club and Chambers of Commerce. So they might be able to draw upon local resources.
The charter school motto could become "Everyone Has the Right to Know All They Can Know and Be All They Can Be," the action plan concludes.
What do you think?

Expanding Persective

Recently, I started this blog, hoping that conversation among people with their differing needs & experiences would lead to mutual caring & support &, eventually, to mutual, creative solutions to the problems we face.

Care for people with dd is very expensive, but thinking back over the many years I have been involved, assuming there is not enough money for this or that only assures that the thing cannot be afforded. We must go for what is best for the individuals who need the services. That is where the progress always has been made.

Where my sister, Kathy, lives, all her needs are provided for, which is a wonderful blessing. I know that I would burn out in about 6 months if I tried to take care of her, myself, even with help; and even then, she would suffer losses, for it would not be possible to provide from home all of what she needs. Her needs are just too intensive. If there were a situation in the "community" that could meet them all, it would be hard to justify the extra money it would cost when there are so many others who also need services.

This evening I was contrasting her living situation with another I encountered a while back. Kathy's Fircrest home is brightly lit, uncluttered and spacious with communal living room and activity/dining room shared bathroom and wonderful bathtub with excellent access, and semi-private sleeping areas for her and her 6 housemates.

The other situation I encountered as I was leaving from a meeting in a small, western Washington town. I was just approaching the freeway on-ramp when I noticed a dog trotting along in the same direction. I stopped & enticed him into my car. Finding that he wore a tag with an address, I took him home. The house to which he belonged was more on the order of a shanty. The property had not a plant nor blade of grass growing on it, just a wide expanse of hard dirt. The house, badly in need of paint, appeared to be only about 400 square feet.

A young man came to find out what I was doing with the dog and gratefully accepted custody of him when I explained. He said neither the dog, nor the house was his, but that the owner, his foster mother, was in the hospital, having taken a fall. He asked me inside so he could take my name and address for her. Inside was clean and old-fashioned homey, with lots of family photos on the walls of tiny, crowded rooms, the ones I saw, anyway. The young man chatted, praising his foster mother to the skies for having raised him and several other foster children, some of whom he called "mentally retarded," and all of whom he claimed as "family." He explained the children all had grown and were gone, now, didn't say where or how they were doing, except for one he said had gotten into trouble with the law. Most of his conversation was in praise of his foster mother whom he knew as the biggest hearted, most wonderful woman, ever. As I looked at the tiny living room, I wondered how she had managed with so many in such modest circumstances.

And I wondered how typical it was for DSHS to support living situations such as this one. I thought about the love the young man had experienced, pondered the struggles the woman must have had to keep it all together. Listening to the young man talk about his former life in that house with it's owner and all the children she took in who might not, otherwise, have had the love she had to offer, my perspective was expanded.

When I think of this, now, it helps me understand how there can be the sense of injustice that some express about the resources that are spent in residential habilitation centers (RHCs) for people like my sister. Then, I think about the fact that she and those with whom she lives need every resource that they are provided. They should not be deprived of what they need because of the needs of others. Instead, we all should be working toward more for those who receive so little or nothing at all.

I am convinced that in our society, there is plenty of money and plenty of resources. What is missing, rather than money, is the will to prioritize it's use for these purposes. It is there that we need to be addressing our collective attention.

As this blog grows into the inclusive vehicle that I envision, I hope to see us brainstorming with crackling creativity to find or develop the financial where-with-all to meet the needs of everybody. If this seems like pie-in-the -sky, perhaps that is what it will turn out to be; but for certain, nothing new or more creative will happen without some new kind of effort and thinking; so I invite you to come along, share your experience and perspective so others have a sense of who you are and can begin to see through your eyes. If enough of us do this, a sense of "our community" will emerge. From there, we could surprise ourselves with what we co-create.

I surely hope you will join in. I just know you have something very unique and special to share, even it it is something you are used to and, so, take for granted. How about it? You can click on "comments" and write or paste-in your contribution, or you can email it to me & I will post it for you. Saskialucianow@gmail.com
Together we are Awesome......Saskia

We All Belong!

"He drew a circle that left me out,

heretic, rebel, a thing to flout;

but Love and I had the wit to win;

we drew a circle that took him in."

This verse comes back to me from childhood. I wish I knew to whom the authorship credit belongs.

Just now, it seems to fit perfectly the strategy that those who need RHCs are called upon to adopt.

One of ARC's and the DDC's newest initiatives is "We All Belong" They make it clear that what they mean is that all people with dd belong at home or in their local community, "not in an institution." "WE ALL BELONG!" is a wonderful statement which SHOULD include everyone, no matter where they live: in an RHC, in the family home, in a group home, in an apartment or a nursing home.

Lets embrace INCLUSIVITY TO THE MAX! Every bit as much as universities, hospitals, schools, senior centers, churches, nursing homes, group homes, intensive tenant supported housing, adult family homes, boarding houses and families that live together are part of the community, so are RHCS and the people who live in them. WE ALL BELONG! Lets sing it out and celebrate! ........Saskia

A Dose of Sanity For SB6182

Yesterday, some much needed sanity was added to SB6182 by senators who understand the importance of the role that RHCs play and who support fiscal accountability & even-handedness in making law, as well as absence of conflict of interest. Gold stars for Senators Schoesler, King, Honeford, Roach and Sheldon!

Saskia

RHC Closures=Jail

Here is still another lucid argument & plea by the mother of a person with autism. Having recently lived in the "community," her son now is in an RHC." One can readily understand his family's strong support for retaining them.

"This is my family's story if Fircrest is closed:

We just barely survived Fodor Homes and the stress of the closure. Our severely autistic son, who can be violent, came home to live with us; and it put me into the cardiac care unit at Virginia Mason for one week. We had to pay, out of pocket, six thousand dollars for one month for his respite care. Nobody even offered to help us.

If we build up services too fast in the community we will be repeating another Fodor Homes scenario. Look at the mess the adult homes are in! Didn’t we learn this the last time? Why are we going to do it again to severely autistic people and their families? Haven’t we suffered enough already? Our kids are autistic, this should NOT be a criminal offense nor should it be a reason to toss our kids out of medical support living situations into the “community” where these medical and behavioral supports do NOT exist.

Once again, we are repeating history. We still see, everyday, the results of state closure of Mental Hospitals that has resulted in homelessness for millions of mentally ill people. Are we going to do the same thing? Are we now going to make autistic people the new homeless? We do not have the proper services outside the RHCs to care for many with severe autism, so are we going to ignore the problems and solutions. Just like we did the mentally ill and veterans, so that we can save a few bucks?

My son should not be thrown onto the street or into the justice system JUST BECAUSE HE IS AUTISTIC! Are we going to become the state known for jailing it’s autistic citizens? Yet this is EXACTLY what we are doing. Closing the RHCs will not make severe autism go away, it will just dump these kids, when they hit a crisis, as they do, into a Jail which has no ability to meet their medical needs at all. This is not a fear, it is a CURRENT REALITY.

If Fircrest is closed it will put my son in danger of the three strikes law just because he is profoundly autistic. My son can be aggressive and this is common for those who are non-verbal autistic. My son does not understand that it is against the law to assault. In fact, he does not even know what the law is. He can not, at times, control his emotional outbursts. This is why he has the intensive medical and behavioral intervention that the RHCs can provide him. He will more likely be physically and sexually abused in prison. My son will take off all his clothes if he even gets one drop of water on them. What do you think will happen to a handsome, non-verbal, autistic, person in jail when they and take off all their clothes because they are wet? How can we put someone like my son in jail or prison? What does this say about us in Washington State that we punish the innocent? What will the rest of the country think about us? If the safety net of Fircrest is taken away, my son could be sent to prison simply because he is autistic. How would you feel if this was your child?

Jailing autistic people will cost the state and us more money in the long run. One lawsuit that the state lost was for 4 million in Kitsap County because one poor autistic man spent 4 years in jail without being charged just because he hit his mother due to an autistic crisis. We are shutting down our safety net that will prevent many future lawsuits.

Advocates are supposed to help families like mine but they don’t and if Fircrest is closed it will make my life a living hell. It will put my 19-year-old son at risk to go to jail, prison, or become homeless, and it will make him an easy target for emotion, physical, or sexual abuse. This is about money, it is about taking away what my son and other people like him need to survive so that others can have the funds. This is discrimination and it is putting vulnerable autistic people knowingly in harm’s way. Why would any of us think that autistic people are better off in Jail or prison? Why?

Rebecca Sargent"