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.

Finding Your Way Around

TO SEE OTHER'S INPUT: below each post on the right, click "links to this post;" or in the left side column, under "Labels," click the discussion link that interests you.

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Thursday, July 7, 2011


Triple Tribute to Robin Sims

“Resolve is what brings us back every year and what keeps us going as advocates day in and day out, even against the odds. If not us, who? Our resolve speaks to the immediacy of the need and our unending actions to meet our daily challenges.” This statement was part of Robin Sims' last VOR President’s Message. Robin had been VOR’s President since 2008 and “resolve” describes so well her every action on behalf of individuals with intellectual and developmental disabilities (ID/DD) and their families. "

I never met Robin, but reading about her in VOR'S letter and memorial tribute, I found myself at once, sad to have missed her and grateful for all that she had done on behalf of rights of and services for all people with DD/ID. Seeing and listening to her video tributes from VOR's website infused me with inspiration. I hope they do the same for you. The first is her brother's tribute to her and the second is one by New Jersey legislators.

Here, with permission of VOR, is an edited version of the longer letter which I found so inspiring.

"Robin served as VOR’s President since 2008 until about a few weeks before, when her health required that she resign. Her dedication to VOR was so strong she even participated in VOR’s Annual Conference and Initiative earlier in June. As the mother of two children with developmental disabilities, Robin brought to VOR a passion for our mission that is really only felt by families whose motivation is personal. Advocating and leading alongside mothers, fathers, sisters, brothers and other close relatives, she motivated others by example and reminded anyone who would listen: “If not us, who?”

Robin was not easily deterred in the face of injustice. From the Halls of Congress to living rooms as well as the Bloomfield Recreation Commission, the National Advocacy of Families, and also a seat on the N.J. Council of Developmental Disabilities, Robin’s advocacy meant the difference between desolation and salvation for countless individuals and their families. Perhaps Robin’s greatest gift to our advocacy movement is her legacy. She has left us with the wisdom, the energy, and the knowledge to know we can carry on - that we must carry on. Her legacy will not fill the hole in our hearts, but will sustain our advocacy on behalf of all people with ID/DD.

VOR represents a necessary voice: VOR is the only national advocacy organization for people with ID/DD that stands up for the right of individuals and their families to choose from a full array of service options to meet very diverse needs (www.vor.net). VOR respects choice and embraces the individual and family voices as primary.

Robin's brother, Geofff, wrote: .

"This evening our lovely Robin passed away. Ever the fighter she gave every last breath to helping others! I am such a better person for having her as my sister and our kids are so much better off today having her as their advocate." Geoff also produced the incredibly moving video at http://youtu.be/bcEInf2tKxI Is it Robyn's incredible , singing that can be heard throughout tthroughout the tribute? She had been a concert soloist and member of the NYC Opera Co.

Following Geoff's tribute to his sister, you can find just behind it a tribute to her by state legislators.

Robin's family has set up the “Robin Sims Memorial Fund” as way to keep Robin’s passion for advocacy on behalf of people with intellectual disabilities alive. They see a managed and ongoing fund as a way to sustain Robin's incredible dedication to advocacy on behalf of people with intellectual and developmental disabilities. The fund will assist VOR, her local organizations, and families in need. To contribute, make checks made payable to the “Robin Sims Memorial Fund”.
Send to:
Robin Sims Memorial Fund
356 Jarome St.
Brick, N.J. 08724

For more information and a beautiful photo of Robin, just click on the title of this post.
In gratitude,

Monday, July 4, 2011



It has taken me a while to digest some staggering information from 2 budget "conferences" led by DSHS last Thursday. The primary speakers were Susan Dreyfus, DSHS Secretary and Mr. Doug Porter, Assistant Secretary for DSHS Health and Recovery Service.

Mr. Porter explained that many of the cuts are in jeopardy due to legislated "start dates" that were too "optimistic" with "impractical timelines": so some legislation will need to be revisited, next year.

New DDD (Division of Developmental Disabilities) " Investments"
The DDD will invest $10,000,000 in "community services." to provide Quality Assurance for Adult Family Homes, , it will invest an additional $1,500,000 for Vulnerable adults. Friends who are case workers tell me that the first residential placement they are supposed to try for a person with ID/DD is an Adult Family Home. Hopefully, the $1.5 million Quality Assurance Program that is developed will prevent the kinds of tragedies that were cited in the Times series that detailed horrendous abuse and neglect after DSHS had moved people from nursing homes to Adult Family Homes. http://seattletimes.nwsource.com/html/seniorsforsale/ , http://www.youtube.com/watch?v=w2fGpw6oQ64 Seniors For Sale: Dotti and DSHS.

"Community" Services: DDD & Other Reductions .
Personal Care Hours are reduced.
Mandatory caregiver training is deferred.
The employment and Day Services programs are modified, requiring, in some cases a change of waiver status.
Disability Lifeline Program funding is drastically cut.
State Food Assistance is cut.
Reduction in Mental Health Funding (RSN)
Reduction in Chemical Dependency Services
Staff funding & operating costs reduced at State Hospitals.
Management & Administrative funding is reduced: (Ms Dreyfus states this includes Oversight and Quality Assurance)
Medical cuts are drastic, including the closure of some Rural Health Centers, cuts in outpatient visits, non emergency emergency department cuts, & "Healthy Options FQHCs, antidepressants, wheelchair limitations, OT, PT, ST limited variably depending on origin of need. No glasses, hearing aids. Adult dental is available to Home and Community Based Waiver clients only. To learn more: dshs.wa.gov . Click on : "DSHS legislative highlights"

The Department is increasing the TAKE CHARGE PROGRAM, but taking eligibility down from 350% to 250% of the federal poverty level. (I am not familiar with this program, but am reporting what I heard in case readers who need the service understand it.)

Medicaid purchasing is moving to the Healthcare Authority. Little explanation was given for this "efficiency." It was stated that "not all things funded by medicaid are moving to the Authority." Confused yet? Me too.

Ms. Dreyfus praised the Department's tracking system which she says can track across departments and programs! She stated that DDD is required to make 4 assessments in the year following a move by "Money Follows The Person" clients. She seemed utterly unaware that the Department is drastically behind in their assessments and had stated as much in their Decision Package that was provided to the legislature. My sincere question is: if there is in place such a wonderful tracking system which can track across programs and departments, why is it like pulling hens teeth to get ALL of the "community" costs for any given client or any group of like clients?

Ms Dreyfus sounded proud and happy to have closed Frances Haddon Morgan Center, and frozen admissions at Yakima Valley School, saying that we still need "rehabilitation" centers (the centers are "habilitation" centers because the skills being taught are for the most part new to the clients; it is not a recovery process, but, evidently, Ms Dreyfus does not know this or may simply have trouble with language.) She went on to say we simply need fewer "rehabilitation centers" and they should only be for the hardest people to serve.

Challenges To Be Met

It continues to concern and perplex me that Ms Dreyfus, the governor and the legislature all ignored the very clear language in ADA/Olmstead that gives clients who qualify for ICF/MR level service CHOICE between "community" and "institutional" residence. According to this law, which HAS been tested and DID PREVAIL in Florida, the client must be admitted within a reasonable amount of time and may elect to make the institution their home. It does not matter what age they are or if they are "the hardest people to serve" or not, or , according to a letter written by CMS to DSHS, whether the legislature has appropriated enough money or will have to appropriate more via supplemental budget. Ms. Dreyfus, of course, did not approach this subject.

I would like to hear your thoughts concerning the possibility of using RHCs instead of home and community based waivers when budgets are cut below levels supportive of meeting the needs of the client and his family. If this would not be a good idea, I am eager to hear why, not ideology, but real concerns and fears. If you think it would be a good idea, I would like to hear why it would. Again, not generalizations, but thoughtful information that might be helpful to folks who soon may be faced with such difficult choices.

Real World Fallout From the Budget Cuts
Toward the end of the second conference, one such person, a mother, challenged Ms. Dreyfus, asking if the state would accept responsibility if, after having cut her hours of service, she had to get another job and her son got hit by a car while wandering in the street looking for her or if he burned the house down while she was at work. She explained she was worried about this because she does not have the money to pay a caregiver so she can leave him attended while she is at work. After she had repeated her fear about 3 times, Ms Dreyfus directed her to speak with a particular person to see what could be worked out for her.

A caregiver explained that the needs of her severely affected patient had increased and she had tried numerous times to procure something that was required due to his worsened condition, but finally, her job had been threatened because she was so persistent. She, too, was directed to talk with a specific person.

After these two complainants, another provider spoke on behalf of families and providers who "don't know how to work the system", saying that children's services in DDD were "hardly accessible."

RHC Parents and Guardians: Be Thankful
Yes, there have been cuts to RHC amenities and the loss of the RHC infirmaries was a loss to "community" residents as well as RHC residents; but Federal requirements are strict and protect RHC residents with regard to health, safety, jobs, recreational activities, behavior management and learning as foundation for independence when appropriate to the resident's capacity. Most of us can go to sleep at night trusting our loved ones are safe and appropriately cared for in our absence. And we also know that we are welcomed and respected as authoritative members of their professional teams with as much participation as we desire and can do.

One of my long standing fears about community placement for my sister has been that when a problem might arise, as they inevitably do, logic, creativity and the fact of her need would not be sufficient to overcome the roadblock of insufficient funding. When problems arise, it is, of course, a bother, but the good news is that there is always some place to go, some way to resolve differences to the benefit of our RHC resident.

I am looking and listening for ways to encourage DSHS to bring the "community" Quality Assurance performance up to the standards to which RHCs are held without diminishing the RHCs.

From my own review of numbers and letters to CMS, I know that Cheryl Felak's comments regarding "no paid services" in the DDD system ( http:/ddexchange.blogspot.com/2011/07/progress-or-pie-in-sky.htmlcomments ) are correct, but, even for those people who currently don't need DDD services there will come a day when most of them will.. Whatever their choice, then, if they qualify for institutional and HBCS services, we want them to be secure, and safe with all of their needs met. Getting from" here", where, generally speaking, that is only true of people using RHC services, to "there." where "community " dd services in truth will be offer the same high quality of care with adequate supervision, requirements for programs, healthcare, therapies, & audits with adequate funding is our collective challenge. Only when it has been met will the focus be right: that is, "Considering all of his or her needs, which on the spectrum of choices is the most supportive environment for the client and his/her family?"

Let's have your ideas and the ideas of your friends. Network these considerations,
please, and invite them to the blog. Collectively, we are exponentially more creative than the sum of us together. (Synergy)

Thank You,

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.