2011 VOR Annual Conference Report

In two parts:

Standing Up For The Rights Of People With Intellectual Disabilities
Further report on the VOR Washington Initiative this year

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Standing Up For The Rights Of People With Intellectual Disabilities, Family Members Take Our Concerns To Congress

By: Mary O'Riordan, President, Parent Hospital Association, Sonoma Developmental Center.

I attended the VOR Annual Conference and Initiative in Washington, D.C. from June 9, through 16, 2011. VOR is our national family/guardian organization advocating for people with intellectual and developmental disabilities. I was joined by other family members and advocates from southern California as well as representatives from the employee unions (CAPT AND AFSCME) mostly to bring the needs of developmentally disabled people to the attention of our elected representatives in D.C.

California representatives were briefed on important issues affecting people who are medically fragile and are fully dependent on 24-7 care for their survival.  We visited all members of Congress, as well as our two state Senators and other key federal agencies within the Administration.

The purpose of our visit to our elected representatives was, most importantly, to try to get them signed on as co-sponsors of H.R. 2032, if possible, or at least get them to support this Bill. This legislation, if passed, would require that residents of Intermediate Care Facilities, such as Sonoma Developmental Center, and their families and/or legal guardians be notified in advance of a class action lawsuit involving the closure of the facility where they live. They would be given a time limited opportunity to opt out before the lawsuit is filed. Lawsuits by federally funded attorneys have resulted in residential closures and the eviction of thousands of developmentally disabled individuals, without regard to their choice of staying in their homes where they have lived and thrived for many years. This very often has tragic outcomes – preventable deaths, homelessness, abuse, neglect, prisons.

This important legislation was introduced by Democratic Congressman Barney Frank of Massachusetts; Republican Representative Bob Goodlatte; of Virginia; Democratic Representative Debbie Wasserman Schultz of Florida.

Americans with severe and profound intellectual disabilities are being seriously threatened by these class action lawsuit and the closure of their homes. Reduction in budgets, and a shift of basic government philosophy that dictates all people are allegedly better served living in a community setting, such as board and care homes, or group homes. This often means that needed medical, and dental care, and other specialized care is reduced or non-existent once they leave these facilities which has all the centralized services to provide specialized care for this unique population.

Many of the important programs that serve this vulnerable population come from the Federal level, such as Social Security and Medicaid. Many laws have been passed on the Federal level that affect where this vulnerable population may live. Many of these laws are being misused by those with an agenda to close all congregate type care, where all the necessary services are centralized and are excellent, an example of this is the Sonoma Developmental Center and the other developmental centers in the state.

It is important to note that nothing in the Olmstead Decision, Olmstead v. L.C.119 St. Ct 2176 – speaks of the elimination of all congregate type facilities.  The following is a quote from Justice Ginsberg:

”We emphasize that nothing in the ADA “Americans with Disabilities Act “or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.” 119.S. Ct.2176,2187 (1999)

That's what the law states, yet the Regional Center case workers, Disability Rights Advocates, and numerous others who make decisions that are ideologically based constantly reference the Olmstead Decision as the law that gives them the right to close all Intermediate Care Facilities (ICF's) in the state. This leaves frail, disabled people without the necessary medical, dental, professional staff and oversight for medications that they need for their very survival.

We all remember the Reagan years in Sacramento when all the facilities for mentally ill people were closed and we see every day the horrible outcome – people on the streets and in the prisons instead of being in treatment centers. The same tragedy has been now happening to developmentally disabled people.

I know we will have those with opposing views on this come forward with examples of all the wonderful homes in the community and how well every disabled person is doing. They will show you their few wonderful homes but what you need to see is the hundreds of inadequate, unsuitable and inappropriate homes.  Also, listen to the families – not the highly paid advocates, the money-making vendors, the lobbyists, and the case workers who accommodate them.

Your help is needed. Letters from all our friends and supporters would be greatly appreciated and should be sent to Senators Feinstein and Boxer, Representatives Nancy Pelosi, Lynn Woolsey, George Miller, Barbara Lee, Mike Thompson, Jackie Speier. Gerald McNerney, Wally Herger, Dan Lungren, Doris Matsui, Barbara Lee, Laura Richardson, Pete Stark, Zoe Lofgren, Anna Eshoo, Mike Honda, John Garamendi, asking them to co-sponsor H.R. 2032.

Suggestions for your letter – remind them that VOR members throughout the country visited Congressional offices last week. In case your office was not able to schedule an appointment for a VOR member to visit, our VOR members were seeking support for H.R. 2032, and seeking cosponsors and seeking a Senate companion bill. This legislation is very important for the continuation of specialized services for developmentally disabled people  Please give this request your fully attention and support.

Important: We were told by several of the offices we visited that Disability Rights people called their offices that morning asking them to oppose this legislation. As we pointed out to the staff people we met with, Disability Rights is the state version of Protection and Advocacy and they are the ones who usually file these mean spirited lawsuits.

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Annual SDC fashion show set for Thursday, June 23

The Sonoma Developmental Center (SDC) holds its annual Fashion Show this Thursday, June 23, at the outdoor Gazebo on the beautiful SDC campus. Residents will be modeling the latest fashions from First Impressions.

First Impressions is the center’s clothing store and offers SDC residents a variety of new clothing and accessories. All of the clothing displayed is purchased from catalogs, clothing stores and private vendors.

The theme for this year's show is “Fashion Fitness and Fun.” Approximately forty residents will participate, modeling the latest sports clothes and accessories as they walk down the colorful runway. Fashions on dispaly will include the latest sporting clothes apparel and accessories available at the clothing store.

Teresa Murphy, Assistant Administrative Services Director at SDC, will be the official Fashion Announcer and give a description of each outfit, relating them to a variety of sporting events, while family members, other residents and employees cheer the models on as they strut down the runway.

For more information, you can contact Jorge (JJ) Fernandez at SDC by phone (707) 938-6643 or email jorge.fernandez@sonoma.dds.ca.gov.

New school for children with motor disabilities opening in San Francisco

Chef Elisabeth Prueitt, co-owner with her husband, Chad Robertson, of Tartine Bakery and Bar Tartine, recently announced that she is co-founding the Conductive Learning Center of San Francisco (CLCSF), a non-profit school for children with motor disabilities. The new school is scheduled to open this fall.

Prueitt and Robertson’s daughter, Archer, who has motor delays due to cerebral palsy, has been helped significantly by her work with Hungarian teacher Krisztina Abonyi-Bernstein (co-founder of the CLC), as well as short stays at the Conductive Learning Center in Michigan. Archer’s progress with the program inspired Prueitt to bring this innovative approach within reach of Bay Area families.

“It was evident as soon as we started working with Krisztina that this was an approach that combined common sense with what science now understands about brain plasticity. After attending the school in Michigan, there were two things that stood out: this was a unique educational program that made a huge impact on Archer, and that in a classroom setting children are inspired to help each other and show what they have learned,” says Prueitt in a press release announcing the new school.  “We knew we either had to move to Michigan or open a school here.”

Created to help children with motor challenges such as cerebral palsy and spina bifida, conductive education is based on the work of Hungarian doctor András Pető.  The CLC aims to integrate medical knowledge with educational methods that enable children to gain independence, self-esteem and problem solving skills for daily activities. Although the approach is widespread in its native Hungary and parts of Western Europe, few conductive learning centers exist in the U.S. When it opens this fall, the CLCSF will be the first such educational system of its kind in the Bay Area.

You can watch a clip of a segment that ran on 60 Minutes about the Pető Institute and its methods and successes here: 60 Minutes on Facebook.



Because of the significant costs associated with opening the new Conductive Learning Center of San Francisco, Prueitt has organized a fund-raising campaign. The first benefit dinner will be held at Bar Tartine on June 27th and will feature a Hungarian menu created by executive chef Nick Balla.  It will be a family style meal eaten against a backdrop of live music, paired with wines by Alex Fox, and ending with desserts that Prueitt herself is creating.

The benefit will also feature a silent auction offering rare items such as a bread baking apprenticeship with Robertson, a custom herb garden from Flora Grubb Gardens, Tartine tote bags hand painted by local artists, as well as various gift certificates to local restaurants and cultural institutions.

DETAILS:
Date: Monday, June 27th, 2011
Time: Cocktails served at 6:30 PM; dinner and auction to follow
Location:
  Bar Tartine
  561 Valencia St. (at 17th Street)
  San Francisco, CA 94110
  (Valet parking available)
  415.487.1600
Cost: $250 per person (includes dinner, wine, tax, and gratuity; fully tax deductible)
Tickets: available at Eventbrite (http://clcsfbenefit.eventbrite.com/)

For more information on Conductive Learning Center of San Francisco, including more details about the upcoming benefit dinner, visit their website at www.conductivelearning.org.

When the disabled slip through the cracks

San Quentin by Stephen Worrell

One of the things the Parent Hospital Association does is lend support to developmentally disabled individuals and their advocates when they need help accessing services or have legal difficulties.

One of the people we've helped recently with financial assistance to hire an attorney is a 33-year-old developmentally disabled man named Malcolm.

Malcolm was diagnosed as mentally retarded and autistic when he was 3 years old and has been in special education and special work projects all through his life. Until his recent troubles, he has been able to live with his mother.

Malcolm has had a few jobs during his life, although with the aptitudes of a 9-year-old, his opportunities and abilities are necessarily limited.  His feelings are easily hurt so he has often walked off jobs.

Malcolm's legal problems began when he got into an altercation with his boss on one of the jobs and wrote threatening letters, which he stuck on the man's door with bubble gum. The boss called the police and Malcolm got arrested. Another bad letter to someone resulted in a parole violation and he got sent back to jail. He has now been 18 months in Santa Rita jail, and there are plans to send him to San Quentin. According to the attorney who is now working on Malcolm's case, there is no exception in the law for people who are mentally retarded.

Throughout this chain of events, Disability Rights and the assigned Regional Center representative have never participated on Malcolm's behalf.

Malcolm has been described by people who know him as "a very kind and gentle autistic soul, very obedient and compliant, certainly not a 'behavioral' in any sense. While Malcolm has some histories with little prankish things, Malcolm has absolutely no history whatsoever of any violence of any sort. This isn't his nature, never has been."

Unfortunately, Malcolm's situation is not an isolated incident. As is too often the case, the actions and needs of developmentally disabled individuals are misinterpreted or simply not recognized by people who have little experience with them. Incidents land them in the legal system when a referral to care or supervision that is most appropriate would be more effective.

Below is the latest update from Malcolm's mother:

Hello All,
I just had a call from Malcolm. He was a bit upset because another inmate asked him to call a family member to get an address for him to write a letter. The person said they were being transferred on June 27. Malcolm said he tried to make the call but got confused about what to do. He wants to help but doesn't have the skills to know how and he feels bad. I feel proud to be his mother.

I think you all know that about 6 weeks ago Malcolm entered a plea of guilty in a plea bargain. He will be sentenced to 3 years and 4 months in the State prison. He is to be sentenced on June 22 and at sometime after that he will be transferred to San Quentin.
We accepted the plea bargain because again we really had no other choice. Malcolm could have fallen under the 3-Strikes law and been sent to prison for 30 years to life. He would have to serve 25 years before he was eligible for parole. The judge made it clear that the DA and the court had gone a long way to give Malcolm one last chance. I think he also said they doubted it would do any good, but Malcolm would end up in trouble again anyway. But it was because of all the support from family, friends, advocates, and church family that they were giving him that chance. I think that means prayers were heard and answered. With credit for time served and good behavior, I think Malcolm will be released after the beginning of 2012. As a side note, he will have served more time in jail than the BART policeman who shot and killed Oscar Grant.

While I am grateful for the mercy that has been shown Malcolm, I am still praying that he is able to remain at Santa Rita jail in Dublin rather than be transferred to San Quentin. The prison system we all know is overcrowded and has issues properly housing inmates with DD. Malcolm is terrified of going there and all doctor reports say it is unproductive to send him. Attorneys I have spoken with do not think the overcrowded problem and release of 33,000 inmates will have any effect on Malcolm's transfer despite Santa Rita is one of the county jails that will house California Department of Corrections inmates.

I have been blessed to find empathy from the Parent Hospital Association who is helping to pay for a private attorney to review Malcolm's case and meet with him. Hopefully Malcolm will decide that he wants this person, Christopher Shea, to be his new attorney. If that happens, Mr. Shea will ask for a continuance to review the files and the transcripts and to make sure the deal is in Malcolm's best interest. We hope Mr. Shea will be substituted in as Malcolm's attorney prior to sentencing on June 22.

The added benefit is that we assume Malcolm will not be sentenced on June 22. Until he is sentenced he cannot be transferred. It is reasonable that if he has about 3 months or less remaining on his sentence he would not be transferred to San Quentin but will on paper have served a State prison sentence. Right now I think he has about 7 and 1/2 months remaining. So the longer it takes to finish the process the better chance he will serve most or all of his sentence at Santa Rita jail in Dublin.

When I saw him last Wednesday morning he was excited to tell me "Its June". He said he knows because when he saw the paper on Monday it said it was May 31st. He said "one more month gone, six more to go." He is just counting the days and praying for the end to come soon. He got a visit from my mom and one of my sisters last week. Our home teacher visited again recently and does so regularly. Others also go and some have plans to go soon.

As always I thank you for your continued prayers and support. Your outreach to us has been so appreciated. We know we are closer to the end than the beginning. We know at least that there is an end date now, although it is impossible to say exactly when that will be. We hope to keep moving forward just putting one foot in front of the other, not really knowing how we do it. But I guess we really do know.

We receive confirmation after confirmation that we are not alone. I feel your prayers and the power in them. Soon everything will be okay and Malcolm will be home. I hear the word TRUST repeated, whispered from deep within. My testimony grows with Malcolm's.

We love you all.
Debora

Urge your representative to co-sponsor H.R. 2032 - help preserve choice of care for the severely disabled

Federal legislation designed to protect the rights of people with profound intellectual and/or developmental disabilites was introduced on May 26, 2011 by U.S. Representatives Barney Frank (D-MA), Bob Goodlatte (R-VA) and Debbie Wasserman Schultz (D-FL). Rep. Bob Filner (D-CA51) was one of the original co-sponsors.

The bill follows up on last year's efforts to pass H.R. 1255, which would have required that before federally-financed class action lawsuite against Medicaid-certified and funded intermediate care facilities for people with mental retardation (ICFs/MR) can proceed, residents and their legal representatives must receive notice of the proposed class action and be given a time-limited opportunity to opt out of the lawsuit.

H.R. 1255 garnered broad bipartisan support with 90 co-sponsors.

According to the letter circulated by the authors of the new bill to House colleagues, H.R. 2032 provides the same protections in class actions.

Furthermore (from the letter):

"It (H.R. 2032/the new bill) will also address similar actions by the Department of Justice (DOJ) that affect the choice of residency for our most vulnerable citizens. It does so by requiring DOJ to consult with the residents and their legal representatives in any DOJ action involving ICFs/MR and, when a lawsuit is filled, provide for a right of intervention for residents or, where appointed, their legal representatives.

"Passage of this bill is desperately needed to make sure that the residents of ICFs/MR and their legal guardians play a key role in the decision-making process as to where they choose to live from the widest possible array of choices. Too often federally-funded class action lawsuits have been filed, not with the purpose of ensuring that ICF/MR homes are providing quality care but in support of an ideological agenda that opposes ICF/MR care. The results have been unneessary deaths and abuse, as documented in studies and articles in major newspapers across the country.

"Many of the residents of ICFs/MR operate on a cognitive level of an infant or toddler and no one would question the rights of parents to make fundamental health care decisions on behalf of a one year old. This legislation respects the role of court appointed legal guardians, often close relatives or parents of the affected residents."

In urging representatives to join in co-sponsoring the bill, VOR eleborated on the concerns over DOJ actions in recent years.

"Since 2009, the Department (of Justice) has issued investigative reports, filed suits or presented briefs in cases alleging violations of the Americans with Disabilities Act (ADA), seeking or agreeing to settlements that would reduce significantly the population of or close all ICFs/MR in Virginia, Georgia, Arkansas, Pennsylvania, New Jersey, and Illinois.

"Like the federally-funded class action lawsuits which target ICFs/MR, DOJ actions have typically been taken without consulting affected residents or their families and legal representatives. Instead, DOJ attorneys are substituting their judgment with regard to ICF/MR living without any regard to the opinion of the affected residents, their failies or guardians. These DOJ lawsuits are inconsistent with the ADA and the Supremem Court decision interpreting it, Olmstead v. L.C., 119 s. Ct. 2176 (1999), which do not madate ICF/MR closures, but seek a balance between encouraging community integration and preservation of facility-based care for those who require or choose the comprehensive services offered at ICFs/MR. As Justice Ginsburg wrote for the majority, 'We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it.' (Id. at 2187)."

If you have concerns about the rights of the severely developmentally disabled and the future of developmental center care, join us in asking your U.S. representative to co-sponsor this critical piece of legislation. To refresh your memory on who you need to contact, visit www.govtrack.us to find the appropriate person -- and then tell them to contact Pilar Falo, Legislative Counsel to Rep. Barney Frank, at 5-5931 and add their name to the list of co-sponsors.

If you would like to write to Parent Hospital Associaion (PHA) and let us know you support H.R. 2032, we would appreciate your feedback. You can contact us by email [info@parenthospitalassociation.org], post a comment on the Parent Hospital Association Facebook page, find us on Twitter, or (gasp!) write to us at PO Box 122, Eldridge, CA 95431-0122. We look forward to hearing from you.

Have you pulled up a chair with The Coffee Klatch?

If you're a parent or caregiver of a child or adult with special needs, you might like to know about the resources available through a unique online community called The Coffee Klatch.

The Coffee Klatch is an interactive forum on Blog Talk Radio and Twitter bringing together expert guests from around the world and those with needs, concerns and interests in the special needs community.

Tomorrow, on Thursday, June 2, the chat on twitter is about parental stress, loss of work, and the financial and marital strains of dealing with a child/teen with mental illness with Marianne Russo of The Coffe Klatch. Time is 9:00 a.m. Go to tweetchat.com/room/tck to participate.

That's just one example of the kind of programming put together by the crew at The Coffee Klatch. There are other discussions scheduled as well - check The Coffee Klatch calendar for details and a direct link to TweetChat.

And then click over to Blog Talk Radio where The Coffee Klatch provides a "virtual cup of coffee for parents of special needs children." You'll find interviews with award-winning authors, expert psychiatrists, psychologists, physicians, advocates and internationally renowned children's foundations that provide valuable information to help you raise your special needs child.

The Coffee Klatch was begun to help remedy the isolation so many parents of special needs children experience and to provide much needed information and support. As they love to say, "You are your child's best advocate - if not you then who - become an informed educated parent."