VOR calls for moratorium on deinstitutionalization lawsuits

Concerned about deaths of intellectually disabled individuals, VOR, a national advocacy organization representing people with intellectual disabilities and their families, has asked Members of Congress in several states to call for a moratorium of federally-funded deinstitutionalization lawsuits.

“Protection & Advocacy and Department of Justice lawsuits have forced people with severe intellectual disabilities from their specialized homes and into smaller, unlicensed settings that are too-often not prepared to handle people with such severe degrees of intellectual disability,” said Tamie Hopp, VOR’s Director of Government Relations & Advocacy.

VOR’s call for a moratorium was prompted by the New York Times reporting of tragic preventable deaths of hundreds of people in New York group homes. Specifically, the Times found that “One in six of all deaths in state and privately run group homes [in New York], or more than 1,200 in the past decade, has been attributed to either unnatural or unknown causes. (“1,200 Deaths and Few Answers,” November 6, 2011).

“The silence by federal agencies in response to these deaths is deafening,” said Hopp. “Not only have P&A and DOJ done little if anything in response to these deaths, which numbered more than a 100 per year over 10 years, they have continued their ideological warfare on larger Medicaid-licensed and funded ICFs/MR.”

Since 1996, P&A have filed at least 17 lawsuits involving ICFs/MR for the purpose of “community integration.” In recent years, DOJ has also aggressively supported the closure of ICFs/MR in Georgia, Virginia, and Illinois, and is presently investigating similar facilities in Mississippi.

In Georgia, the DOJ settlement calls for the displacement of 10,000 people with mental illness and developmental disabilities.   “It’s a little like loading more passengers onto the Titanic,” remarked William Fischer, Professor of Psychology, Center for Mental Health Services Research, University of Massachusetts.

The Independent Reviewer’s first year implementation report, released October 5, cites serious problems associated with Georgia’s community-based care system, including access to health care, isolation and at least one death due to neglect.

Even P&A has recently acknowledged problems with health and safety in community programs in Alabama and North Carolina (National Disability Rights Network, “Keeping the Promise: True Community Integration and the Need for Monitoring and Advocacy,” December 1, 2011).  In Alabama, P&A was directly responsible for the closure of facilities, leading to the very health and safety problems it now condemns.

“Remarkably, P&A asks to receive more funding so it can better investigate problems in the community,” said Hopp. “VOR would rather they stop spending resources on lawsuits and other activities which serve to place these vulnerable people at risk in the first place.”

VOR’s call for a moratorium was sent to Members of Congress representing New York, Georgia, Virginia, and Mississippi, as well as the 66 Congressional cosponsors of H.R. 2032, federal legislation also which seeks to reform the way these lawsuits are handled.

New York Times article highlights concerns for disabled in state care

Early last month a report in the New York Times brought attention to a crisis in care for developmentally disabled residents in many state homes. Exerpts from the article are reprinted below. At the end of November, VOR referenced the same article in urging Congress to pass H.R. 2032 and improve safeguards. We've included their letter below as well.

You can help by writing to your representatives asking them to support reform and reauthorization of the Developmental Disabilities Act and passage of H.R. 2032.

EXCERPTS: In State Care, 1,200 Deaths and Few Answers (NY Times)

In New York, it is unusually common for developmentally disabled people in state care to die for reasons other than natural causes.

One in six of all deaths in state and privately run group homes, or more than 1,200 in the past decade, has been attributed to either unnatural or unknown causes, according to data obtained by The New York Times. In deaths not resulting from natural causes there had been concerns about the quality of care in nearly half of the 222 cases.  Few states that release such data. [*see Note below.]

What’s more, New York has made little effort to track or thoroughly investigate the deaths to look for troubling trends, and did not take steps to prevent reoccurrence (such as alerts to all group homes), resulting in the same kinds of errors and preventable deaths in group homes, over and over. Responses were typically limited to the group home where a resident died.

The state does not even collect statistics on specific causes of death, leaving many designated as “unknown,” even in cases where a cause is known.

The Times undertook its own analysis of 7,118 death records and found disturbing patterns: some residents who were not supposed to be left alone with food choked in bathrooms and kitchens. Others who needed help on stairs tumbled alone to their deaths.  Some died in fires. Still others ran away again and again until they were found dead.

The data from the state commission, which is responsible for overseeing treatment for the developmentally disabled, included only the broad “manner” in which people died — by homicide or suicide, accidents, natural causes, and “unknown,” the biggest category (10%), other than natural causes.  The average age of those who died of unknown causes was 40, while the average age of residents dying of natural causes was 54, which suggests problems in care.

At homes operated by nonprofit organizations, low-level employees were often fired or disciplined, but repercussions for executives were rare. At state-run homes, it is also difficult to take action against state employed caregivers.

New York relies heavily on the operators of the homes to investigate and determine how a person in their care died and, in a vast majority of cases, accepts that determination. And the state has no uniform training for the nearly 100,000 workers at thousands of state and privately run homes.

Group homes now care for a vast majority of the New York’s developmentally disabled. Staff training to avoid common mistakes which lead to tragedy (such as chokings, drownings, and fires) should be pursued. Providers are not inclined to make changes unless the state requires it; the state must act.

[*Note: Media reports from more than 30 states, however, indicate a widespread, systemic problem with assuring quality care in small group home settings. See, http://www.vor.net/abuse-and-neglect.]

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November 29, 2011

Dear Members of the U.S. Senate and House of Representatives:

VOR is a national, nonprofit organization advocating for individuals with intellectual and developmental disabilities (ID/DD) and their families.

The disability community is quite diverse, ranging from people with some physical limitations to people whose cognitive and/or physical limitations are so significant that they function at the level of a newborn or an infant and require around-the-clock care.

Families of individuals with profound intellectual disabilities who receive life-sustaining care in congregate facilities (ICFs/MR) fear that the forced eviction of their family members will be a virtual death sentence.

A recent New York Times front page story, “In State Care, 1,200 Deaths and Few Answers," confirms their worst fears (see above). It exposes an unchecked system of group homes throughout New York where 1,200 deaths occurred during a 10-year period due to preventable tragedies such as drowning in bathtubs, fires, choking and wandering.  The Times attributes these deaths to a lack of system-wide reporting or staff training.

New York is not alone. There is widespread documented abuse, neglect and death of individuals with profound intellectual disabilities (most of whom are also medically fragile with physical disabilities) in small settings in more than half the states. [*1]

With apparent disregard for the impact on affected residents, many ICF/MR evictions and closures are due to lawsuits and other actions by federally-funded organizations, such as Protection and Advocacy (P&As)  and the  Department of Justice lawyers.

Congress must act. Legislative solutions are at hand:

A.    Pass H.R. 2032, a bill introduced by Reps. Barney Frank, Bob Goodlatte and Debbie Wasserman Schultz, to restore the decision-making authority of individual residents of ICFs/MR and their legal representatives in federally-funded legal actions by P&A and the Department of Justice.

B.    Reform and reauthorize the Developmental Disabilities Act to prohibit their programs from using federal funds for downsizing and closing of Medicaid-certified and licensed public and private ICFs/MR, actions which disregard of resident choice and safety, and fly in the face of federal law, including the Supreme Court’s Olmstead decision.

With documented tragedies, why are the federal agencies, which are charged to protect people with disabilities, closing ICFs/MR? Could these federal protectors be more concerned about their reputations than the lives of those Americans they are charged to protec? [*2] People are dying. Residential facilities are necessary and must remain open. Congress must act.

Please contact Tamie Hopp, VOR’s Director of Government Relations at 605-399-1624 or thopp@vor.net with any questions. Thank you for your consideration.

Sybil Finken, Co-President       Ann Knighton, Co-President  

[*1] See, www.vor.net/abuse-and-neglect

[*2] See, “Neglect for Sale, The American Prospect (November 30, 2000) http://prospect.org/article/neglect-sale (“Because the P&As were so instrumental in closing state institutions, several advocates told us, they fear divulging anything, particularly to the media, that might reflect negatively on community-based programs.”)

Former SDC summer camp yields clues to Valley history

Senior State Archaeologist Breck Parkman
stands in what's left of Camp Butler
photo: Beth Schlanker/Press Democrat

There's an interesting story in the Press Democrat this week that includes a bit of Sonoma Developmental Center history. (see Archaeologists examining 1930s-era summer camp at Sugarloaf state park, 12/11/11, by Bob Norberg.)

Back in 1920, when the Sonoma Developmental Center (SDC) was known as Sonoma State Hospital, the Center acquired property along Adobe Canyon in the northern part of Sonoma Valley to build a dam to create a reservoir. Plans were ultimately stopped by neighbors, and in 1964, the land became a state park.

But while SDC still had the property, a summer camp for children was operated there, providing an outlet for Boy Scouts and Camp Fire Girls during the years of the Great Depression. Staff of the California Department of Parks and Recreation are now documenting what remains of the camp site.

According to the PD article, the camp was built in 1931 and named after Dr. Frederick Butler, who was superintendent of the Center from 1917 to 1948. It was closed at the advent of World War II and never reopened.

Breck Parkman, Senior State Archaeologist is quoted as saying, "What is not apparent is whether the campers were wards of the state center, children of the staff or both."

Do you have any stories about or experience of the camp -- or know anyone who attended outings there? You can email Parent Hospital Association at info@parenthospitalassociation.org. It would be great to know more and pass the information on.

SDC residents create ornaments for official state capitol holiday tree

Residents of the Sonoma Developmental Center (SDC) created over forty ornaments for the annual State Capitol Tree Lighting Ceremony in Sacramento, which was held on Wednesday, December 7th, on the west steps of the State Capitol. This year marked the 80th year for California's official tree lighting ceremony.

The tree was decorated with approximately 900 hand-crafted ornaments created by children and adults with developmental disabilities who receive services and support from the state’s developmental centers and twenty-one nonprofit regional centers. The sparkle factor was amped up by the illumination of 10,000 ultra-low wattage LED lights.

Sonoma Developmental Center residents have participated in creating ornaments for the state tree for more than twenty years. This year the Center's ornaments included colored glittery pinecones, foamed windsocks, decorated cd’s, handmade Christmas trees, and many individualized ornaments made from paper and paper plates that were laminated to protect them from rainy weather.

Merry Christmas California, from everyone at Sonoma Developmental Center!

Sonoma Developmental Center Holiday Craft Faire -- Dec. 6 and 7, 2011

The annual holiday craft fair held at the Sonoma Developemental Center is happening now -- today and tomorrow -- December 6th and 7th, from 10 a.m. to 4 p.m. both days, in the Center's gymnasium.

More than twenty local vendors will be displaying their crafts and handmade goods. Items available for purchase will include knitted hats, pottery, bags with your name embroidered on them, handmade dog bowls, beauty products, ornaments, holiday baskets, handmade jewelry, baked goods, handmade toys, potholders, body lotions, candles, ceramics, one of a kind gifts -- and much, much more.

It sounds like you could do all your holiday shopping with just one visit to the SDC Craft Faire!
Proceeds from the event raise funds for client activities that are not funded by the State.

Entrance to the Craft Faire is free and the event is open to the public.  For directions to the gymnasium, located on the corner of Wilson and Sonoma roads, go to http://www.dds.ca.gov/Sonoma/Directions.cfm.

For more information about the Holiday Craft Faire, contact Becky Zyskowski, Coordinator of Volunteer Services at (707) 938-6713.

Annual tree lighting set for Thursday at SDC

The Sonoma Developmental Center (SDC) will hold its annual Tree Lighting Ceremony from 3:30 to 5:00 p.m., this coming Thursday, Dec. 1, on Harney Circle, outside the SDC gymnasium. Everyone is encouraged to come and join in the festivities and vote for the top three decorated trees.

The large tree on the lawn outside the gym will be adorned with lights and ceremoniously lit at 5:00 p.m. The Peace On Earth Sign that has been a tradition at the Center for many years will also be lit -- you'll be able to see it from Arnold Drive at the four way stop sign.

In addition to the big tree, there will be approximately twenty smaller trees lining the sidewalk on Harney Circle that are being decorated by various programs and departments throughout the facility. This year all those in attendance at Thursday's festivities will be voting for their favorite tree.

Forecasters are calling for a 100% chance of snow for the event -- you won't want to miss it, or the warm refreshments and seasonal carolers. Come rain or shine -- and definitely snow! (Inclement weather moves the party inside the gym.)

If you have questions or need more information about the Tree Lighting Ceremony, contact JJ Fernandez, Public Information Officer at SDC at (707) 938-6643.

Rebuttal to Channel 5 News Report on Sterilizations

On November 10, 2011, the local CBS affiliate station in Sacramento aired a story on sterilizations at State developmental centers in years past. The following post comes in reaction to the story and is from Parent Hospital Association board president Kathleen Miller. You can read more about the news story that prompted this commentary at The Life Penalty: Sterilizing California.

As a former Social Worker at Sonoma Developmental Center and current President of the Parent Hospital Association for the center I find that it is important to me to respond to the recent Channel 5 news report about sterilizations that took place at what was then Sonoma State Hospital years ago. I do not deny in any way the wrong that was done to those individuals who were subject to sterilization against their will and without their knowledge or consent many long years ago. That this happened, not only at what was then Sonoma State Hospital, but also across the whole country in the 1930s, 1940s is a human tragedy. However, it is a tragedy that has been reported in the news on many occasions and one that is no longer appears to be happening. There are many current stories of budget cuts and all types of abuse to report on the population of California’s most vulnerable population of developmentally disabled citizens, many of whom can not even speak on their own behalf. Why do we not see those in the news?

Frankly, in some ways the latest news story on channel 5 offends me. The link of Sonoma to Nazi Germany seems to suggest that Sonoma was unique in its prejudices and quest to prevent reproduction in target populations. In fact the hospitalization up of individuals not in need of such, and “treatments” that would now be clearly viewed as inhuman today was wide spread and not limited to one hospital or even one state as the news story suggests. Further, in my experience as a Social Worker at the center, Sonoma is a particularly loving and accepting community. Every time we on the staff would bring residents to share in local Sonoma events the residents were met with acceptance, respect, and inclusion. Therefore it pains me to see both the center and Sonoma painted an in unfair and negative light.

More important to me however, is the harm done to the center and the current residents of Sonoma Developmental Center by this untimely story. The story about past wrongs should not reflect on the Sonoma Developmental Center of today. The center has, despite recent severe cuts, continued to provide quality care for California’s most vulnerable. Sadly, it does reflect. Any negative publicity, no matter how seemingly unrelated to the excellent care residents receive today, casts the centers in a negative light. Those in positions of political power who wish to close the centers and privatize the care industry use it to strengthen their case.

The losers in this war are people like my son who calls Sonoma Developmental Center home. There is no news story about how he was kicked out of his private for profit community home when his mental illness became more acute. No one bothered to report how he almost died as a result of the drug regimen he received at an acute psych center ill equipped to deal with developmentally disabled individuals. For that matter- how much coverage did the recent deaths of five individuals as the result of a fire occurring in a local community home receive?

I understand that every day news channels must be faced with difficult choices of what stories to report. What I still do not understand is why this story and why now? This story has certainly been reported in the news on many previous occasions. It added nothing new except the face of a man who had the sterilization procedure 65 years ago. Many of our developmentally disabled family members are at risk today! We who love them are engaged in a fight for the chance of our loved ones to have a choice about where and how they live. They are at risk of losing that choice. The recent news story only adds to that risk.

Kathleen Miller
Board President, Parent Hospital Association

News updates from PHA for the SDC community

The weather in Sonoma Valley has been beautiful lately, and this past Saturday was no exception. If you were able to attend the General Meeting, you'll know how stunning the Sonoma Developmental Center campus looks on a warm and sunny Fall day.

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At Saturday's meeting, board member Bev Austin provided statistics on admissions, placements, and other changes in the number of people living at SDC. In summary: The residential population at SDC on September 1, 2010 was 615 individuals. One year later, on September 1, 2011, the number of residents was 567. Details will be included in the next issue of The Eldridge Gazette. (Download a copy here when it is available.)

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SDC's 3rd Annual Christmas Tree Lighting festivities are scheduled for Thursday, Dec. 1, from 3:30 to 5:00 p.m. There will be carolers, hot cocoa, many beautiful and creative trees, and there is even talk of a SNOW MACHINE! Stay tuned for more details and updates -- you might remember that last year's party had to be postponed and then ultimately canceled due to sickness at the Center.

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The next PHA general membership meeting will include a panel of people with experience of the closure of Agnews Developmental Center and promises to be very informative. Mark your calendar for 10 a.m., Saturday, January 14, 2012. General meetings are held in McDougall Hall on the SDC campus.

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Planning is underway at SDC for temporarily moving some residents next year to accomodate fire sprinkler system upgrades and sewer line repairs. Check the next issue of The Eldridge Gazette for preliminary shedule and units affected. All needs of the residents are being carefully considered, and plans will necessarily be adjusted as the work start dates get closer, so stayed tuned for more details.

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Sonoma Developmental Center got a mention in the Sonoma Index-Tribune last month (see Flying high for the 'big one', by Sandi Hansen) for its participation in a Valley-wide earthquake drill as part of the 2011 Great California ShakeOut. It is good to be prepared with a plan when the inevitable happens...

Save the date for Heroes with Heart 2012

Preparations are underway for the 7th Annual Parent Hospital Association Heroes with Heart fundraising event to be held on Saturday, March 31, 2012, at the Vintners Inn Event Center in Santa Rosa.

We'll be returning to our signature theme "An Evening in the Emerald Isle" in an elegant new venue located just off Highway 101 in Sonoma County that we think everyone will enjoy.

Our annual fundraiser allows us to raise much needed funds to meet our mission and insure that the developmentally disabled receive the care and resources they need and deserve.

Your support and involvement are crucial to helping us to meet our financial goals. We hope you will join us for an enjoyable evening which includes a hosted reception, silent and live auction, multi-course dinner and socializing with good friends. And if you would like to make a night of it, you can reserve a night stay in beautiful wine country right there at the Vintners Inn. (Call 707-575-7350 to reserve a room. Ask for the PHA room block.)

To be sure that you are on our mailing list to receive further details, send an email with your details and questions to info@parenthospitalassociation.org.

Even if you cannot attend the event in March, there are many ways you can assist us -- as an event sponsor, with a donation to the auction, by purchasing an ad for the program, or by volunteering. Let us know how we can help you help us -- and together we will continue to help those less able than ourselves.

Urge Washington to reform care for disabled

VOR is urging the Obama administration to reform the care system for people with developmental disabilities. They have set up a petition to the White House and are asking everyone who can to add their name in support. If a significant number of people voice their concern about this important issue, White House staff will review it, ensure it’s sent to the appropriate policy experts, and issue an official response.

Called People with Intellectual Disabilities - Crisis in Care, the petition reads as follows:

Title
We petition the Obama administration to reform the care system for people with developmental disabilities to prevent additional tragedies.

Petition Description
The care system for many thousands of people with intellectual and developmental disabilities (ID/DD) is in crisis. Facility closures, service cuts, increasing abuse and an overall lack of oversight are symptoms of the crisis. The system is falling short - our country must protect one of its most vulnerable populations. How can it meet the needs of the 200,000+ individuals waiting for services? Highly publicized tragedies involving people with ID/DD in all settings speak to the urgent need for a solution. Proposed cuts to Medicaid, a life-line for the majority of people with ID/DD, and related policies which eliminate, rather than expand, services will only make the present crisis worse.

Advocates must set biases aside and unite. Elected-officials must act. The need is urgent.

To sign the petition, click here (http://wh.gov/bBY). You will be required to create a WhiteHouse.gov account. Please don't be put off by this procedure - it involves just a few steps. This is to ensure that only individuals (and not computers) are signing the petition. You will be asked to copy a series of numbers and/or letters, which you can change if you have difficulty reading it. A valid email address is also required.

The deadline for signing is December 1, 2011. Please also forward this information on to anyone else who you think would join in this effort.

A little good news for today

Here's a story about Justin, a high school student at Greece Athena High School in Rochester, New York, who happens to be autistic.  It's a report that made the CBS evening news and it will make you smile (and maybe cry).

Effects of antipsychotic drugs on kids raise concerns

A panel of pediatric experts has called on government regulators to further study the impact of antipsychotic drugs on children and improve labeling of the medications, which are often prescribed to children with developmental disabilities.

In a 16 to 1 vote this past September, a pediatric advisory committee to the U.S. Food and Drug Administration (FDA) urged the agency to continue to study the safety of antipsychotic drugs such as Risperdal, Seroquel and Abilify.

The committee also recommended that the FDA enhance drug labeling to emphasize concerns about weight gain, diabetes and other risks that children face when taking the psychiatric medications.

According to a report by Reuters, the recommendations come as more and more children — including many with developmental disabilities — are prescribed antipsychotics, though little is known about the impact of the drugs on young people.

For more on this story, see Advisers urge FDA to address antipsychotics in kids on the Reuters website.

You can also find some basic information on the types of medications used to treat mental disorders, the side effects of medications, directions for taking them, and FDA warnings on the National Institute of Mental Health website.

Disability-rights advocates sue California over proposed cuts

In late September a law suit was filed jointly in federal court by Arc California and United Cerebral Palsy (UCP) of San Diego against the State of California alleging that the State has “abandoned people with developmental disabilities and exposed them to health and safety risks by failing to provide reasonable support services.” Both organizations advocate for people with developmental disabilities. In filing suit, they are attempting to block nearly $100 million in proposed cuts to services for Californians with developmental disabilities, with millions more in cuts triggered if state revenue does not meet projections.

(See: California's budget faces new legal challenges, in the Los Angeles Times and Disability-Rights Advocates Plan Challenge to State Budget Cuts in California Healthline.)

“As California taxpayers, we fully appreciate the State’s need to reduce costs, but we cannot allow the State to endanger its citizens and risk their basic civil rights,” Arc California executive director Tony Anderson said in a statement released on the Sacramento-based organization’s website.

Report on developmentally disabled man at San Quentin

San Quentin prison
by Stephen Worrell

PHA lent some support to the mother of a developmentally disabled man who got caught in the legal system. You can read reports on the issue here on this blog at When the disabled slip through the cracks (06/09/2011) and Update on developmentally disabled man caught in prison system (07/01/2011).

Her efforts to keep him from being incarcerated at San Quentin State Prison in Marin County ultimatley failed, and it was with great concern - for his safety and over the appropriateness of the placement - that she saw him transferred there in September.

PHA has just received an update, which fortunately offers some hope for Malcolm in his situation. We'll reprint it here in its entirety.

I just received a call from a woman in the Mental Health unit at San Quentin about Malcolm. She asked the question on all of our minds: What is this person doing here? She said that she has visited with Malcolm twice and he will be meeting with a therapist at least once a week. He is already on the radar of staff as someone who needs looking out for, and people are very aware that he is no threat to the institution and is someone who needs to be protected.

We spoke for 45 minutes about Malcolm's history before, during, and after his arrest. She said given his short time it is possible they will keep him there at San Quentin. She looked in his file and saw a release date of February 12, 2012, but stresses that might not include all the calculations so don't count on that just yet. She said Malcolm explained to her very clearly that he was never told not to threaten sheriffs and that he is adament that he did not do anything against the judge's instructions when he was placed on probation. She said you can tell that at his core he is still a child.

To talk to someone who has spent time with him is such a blessing. To know that he is touching hearts means my Malcolm is still my Malcolm as I know him and even prison guards and staff can see his sweetness. I am walking on air right now and just wanted to share.

Love, Debora

There are some 30,000 developmentally disabled people in the California prison system. PHA will continue to support efforts to examine the State's penal code for ways in which legislation can be affected such that individuals who do not function at an adult level are not judged as adults in the courts and are not punished with adults in the prisons.

Healthcare coverage for autism mandated by new California bill

On Sunday, Governor Brown approved SB 946, a measure that will require health plans to include coverage for autism as a medical benefit. Passage of the bill makes California the 28th state to take steps to end autism insurance discrimination.

Insurers will be required to cover the treatments only until the federal healthcare law signed by President Obama is implemented. If the federal government does not provide coverage for the treatments outlined in the bill by July 2014, the state autism-coverage mandate will expire.

Senate leader Darrell Steinberg (D-Sacramento), the author of the bill, was quoted in the Los Angeles Times when he hailed Brown’s signature as "a critical victory for thousands of California children and families. For many of them, having this therapy covered by their insurance is the difference between despair and hope."

There are still many particulars regarding cost, effectiveness and the reach of the new provisions to work out. For instance, the mandate does not apply to Medi-Cal, California's Medicaid program, or Healthy Families, California's Children's Health Insurance Program, and so there are questions about its protections for children without private insurance.

Overall, however, it is considered a step forward in addressing the many health and financial concerns facing families affected by autism.

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For more information on the new legislation, read:
Questions About Costs, Duration of New Autism Mandate Persist in Calif.
Autism: Law make insurers cover therapy - for now in the SF Chronicle

PHA Board of Directors to meet Saturday

This coming Saturday, October 8, is the first regularly scheduled meeting of the new 2011-2012 Board of Directors for the Parent Hospital Association (PHA). PHA welcomes all returning board members, as well as a few new members, including board president Kathleen Miller.

The board has a full agenda planned for Saturday's meeting and is looking forward to a busy and eventful year working on behalf of the residents of Sonoma Developmental Center (SDC) and others with developmental disabilities in Northern California. Watch for a full report in the next issue of The Eldridge Gazette.

The PHA board meets the second Saturday of alternating months: October, December, February, April, June and August. General membership meetings are held the second Saturday of the other six months of the year: November, January, March, May and July. Full details are posted here. Please bookmark the page and mark you calendar for the next general meeting scheduled for 10:00 a.m., on Saturday, November 12th, in McDougall Hall on the SDC campus.

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For more information on the activities of the Parent Hospital Assocation, you can download back issues of the bi-monthly newsletter, The Eldridge Gazette, by visiting the Resources page of this blog and clicking on the links to each issue.

Lou and Bianca's autism story

This video really needs no preamble. Its compelling and inspiring message stands for itself. It's the beginning of a father and daughter's story of how their lives were affected by autism.



You can read more of Lou's story about his relationship with his daughter Bianca and his family's efforts to give her the best life possible despite her autism here on his blog 'Lou's Land'.

Remembering the Disabled

Earlier this week, on Monday, September 19, 2011, a Remembrance Day ceremony was held at Sonoma Developmental Center in memory of everyone who has passed away while living at the Center and all state hospitals in California.

The event was hosted at the Gazebo on the SDC campus by Disability Rights California/Peer Self-Advocacy Unit, People First of California and California Network of Mental Health Clients.

In addition to a statewide moment of silence at 1:55 p.m. to honor those who have passed away in state hospitals and developmental centers, simultaneous events were also held at the following facilities:

• Agnews Historic Cemetery, Santa Clara
• California State University - Channel Islands, Camarillo
• Porterville Cemetery, Porterville
• Metropolitan State Hospital Auditorium, Norwalk
• Napa State Hospital, Napa
• Parkview Cemetery, Manteca
• Patton State Hospital, Patton
• Stockton Rural Cemetery, Stockton
• Ukiah Cemetery, Russian River Cemetery District, Ukiah

Remembrance Day ceremonies are part of The California Memorial Project, a collaborative effort between the Peer/Self-Advocacy Unit at Protection & Advocacy, Inc., the California Network of Mental Health Clients, and Capital People First, along with other local People First chapters. The objective is to remember and honor the thousands of people who have lived, who are still living, and who have died in state institutions by:

1. Restoring the cemeteries at the state institutions
2. Recording the stories of people who lived in the state institutions by decade
3. Documenting the history of the consumer/survivor movement in California

Staff, clients and the public are always invited and encouraged to attend the annual Remembrance Day ceremonies.

PHA welcomes the 2011-12 Board of Directors

The Parent Hospital Association general membership meeting this past Saturday was an upbeat occasion with good news from the administration on the results of a summer of surveys and the election of a new group of board members for the coming year.

The PHA welcomed new board president Kathleen Miller. (Watch for a special message from Kathleen in the next issue of The Gazette.) Previous co-Presidents Steve Doherty and Mary O'Riordan remain on the board in the capacity of past presidents and will be joined by some returning and some new members.

The complete list of PHA Board of Directors for 2011-12 is as follows:

Kathleen Miller, President
Steve Doherty, Past President
Mary O'Riordan, Past President
Mike Hawkins, Vice President
Bev Austin, Secretary
Mary Grangoff-Lew, Treasurer
David White, Parliamentarian
Carolina Blake, Member
Alice Nemon, Member
Pat Walter, Member
Brian Farrell, Member
Sue Donaldson, Member

A big 'Thank You' went out to everyone who has agreed to serve on the board, and to Mary and Steve for all the time and attention they have put into PHA over the years. Kathleen was keen to let SDC staff and the general PHA membership alike know that the board will be looking to everyone to participate in PHA activities in any and every way they can in order to keep the group strong and effective.

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In other news, it was announced that next year's gala fundraiser is set for the last Saturday in March (March 31, 2012) and will be held at a new venue - The Vintners Inn in Santa Rosa, CA. The new location offers a convenient location just off Highway 101 and complete event services, which means less time and expense will need to go towards planning and staging the event and more proceeds can be retained for PHA programs. Mark your calendars now - the next fundraiser promises to be a lot of fun.

Safeguarding the Sonoma Mountain viewshed

Earlier this month Sonoma Mountain Preservation (SMP) received a Gold Resolution from the Sonoma County Board of Supervisors for their work over the years in protecting the open space and viewshed of Sonoma Mountain.

SMP began in 1993 as an informal group of Sonoma Valley residents who joined together in response to changes they'd begun to see on the mountain that they believed would adversely impact the nature of the area and its ecosystem over time.

They set out with the goal of preserving the agricultural land and open space on Sonoma Mountain and began by delineating the area and creating a map, setting the boundaries of their area of interest along Arnold Drive, Warm Springs Road, Sonoma Mountain Road, Pressley Road, Roberts Road, Petaluma Hill Road, Adobe Road and Stage Gulch Road.

In 2000 the group became a nonprofit, tax-exempt organization, and their next step involved organizing the community to prevent development on critical mountain parcels, including the Freiberg, Schlumberger and Sonoma Developmental Center upper parcels. These efforts ultimately led to 600 acres of land being transferred to Jack London State Historic Park - including the upper parcel at Sonoma Developmental Center where the Old Orchard area was located (see Old SDC orchard is a rare treasure on this blog).

Other acquisitions included the Galvin Ranch and a conservation easement over the McCrea property, which eventually allowed for a public loop trail.

In 1998, the Board of Supervisors approved an ordinance that was originally proposed by SMP and that protects the visual integrity of Taylor and Sonoma Mountains. In May of this year, guidelines for the Mayacamas as seen from Sonoma Valley were passed by the Board of Supervisors, again at the instigation of SMP, merging all three areas into one ordinance with added restrictions.

Development pressures continue in the area. Already some interests are anticipating the State adding SDC to the list of developmental centers slated for closure, and they have begun to make plans for alternate uses of the many acres remaining at the Center's campus on Arnold Drive.

Hopefully, as the Sonoma Mountain Preservation group continues to monitor land use activities in the area with an eye to continued land conservation, they will join with PHA in guarding Sonoma Developmental Center for its residents, the services it provides to the developmentally disabled community, and the open space it provides for Sonoma Valley.

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For more information:
Sonoma Mountain Preservation
The Eldridge Gazette, Jan/Feb 2011 (pdf file)

Mark your calendars for the September PHA general meeting

The next general membership meeting of the Parent Hospital Association is scheduled for 10 a.m., Saturday, September 10, in McDougall Hall, on the Sonoma Developmental Center campus. Members are encouraged to attend and vote on the new board for the coming year.

Minutes for the last general meeting will arrive soon in your mailbox if you're on the mailing list - or you can click here to download the latest issue of The Eldridge Gazette (pdf file), which always contains minutes to the most recent meeting.

Links to this year's past issues, along with a few from 2010, can be found on this blog's Resources Page or on the Resources Page on the main website.

If you would like to receive notification by email when the next issue of The Gazette is available, use the box in the lefthand column right here on the blog to add your email address to the mailing list. It's that simple, and you'll save the PHA the cost of a paper mailing.

Simple answers elude scientists in search for autism's cause

graphic: Yarek Waszul / NY Times

Is it nature or nuture? Studies indicate that both genetics and environmental factors play a role in causing autism, but clear connections prove elusive and doctors are often at a loss when it comes to offering practical guidance to parents.

An aritcle this week in the New York Times describes the difficulties in teasing apart the various factors contributing to a condition that itself often seems like a moving target. In 'Environment' Poses a Knotty Challenge in Autism, author Perri Klass, M.D. says "Genes matter, but we usually can't tell how. Environmental exposures matter, but we usually don't know which." Recent studies of autism in both fraternal and identical twins only underline the apparent complexities.

Many scientists now believe autism results both from genetic predisposition and from environmental influence, but the term "environment" itself introduces its own complications. According to Irva Hertz-Picciotto, a professor of epidemiology at the University of California, Davis, MIND Institute, environment refers to anything that is not the inherited DNA and include many factors including maternal health and nutrition, stress, exposure to chemicals and perhaps even exposure to a microbe.

How these factors affect the expression of genetic potential is perhaps another question yet again.
Results from a number of studies have associated some specific factors with incidences of autism, however none of the data seems to indicate cause and effect. Yet.

"Every case is probably a result of the confluence of many factors," Dr. Hertz-Picciotto said. "No case probably has one cause."

Which make the condition so concerning to parents - and the continued support of families with treatment and services so important, even in these diffcult economic times.

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If you have questions about the services available to someone you know with special needs, you can visit the Resources page on the Parent Hospital Association website for a list of government agencies that may be able to help. You can also send an email to PHA at info@parenthospitalassociation.org and someone should be able to point you in the right direction.

Generous pay for some executives at group homes for the disabled

[photo credit: Nathaniel Brooks in the NY Times
The day facility run by the Young Adult Institute
in Tarrytown, N.Y. The network collected
more than $1 billion from Medicaid over
the past decade.

The New York Times published a story this week on the money paid to executives of one nonprofit in New York State that operates a network of group homes for the developmentally disabled - $1 million salaries plus car, and then tuition and living expenses reimbursement for their children - all thanks to $1 billion from Medicaid over the past decade.

(See: Reaping Millions in Nonprofit Care for Disabled, by Russ Buettner.)

The story underscores concerns that exist elsewhere, including in California, where budgets are increasingly coming under scrutiny, services are being cut, state facilities are being shut down, and the developmentally disabled are being dispersed to privately-run facilities.

According to the article, New York state "spends, by far, more than any other caring for this population: $10 billion this year, and roughly 20 cents of every dollar spent nationally.

"More than half of that money goes to private providers like the Levys [the executives mentioned in the article], with little oversight of their spending.

"And the providers have become so big and powerful that they shape much about how the system operates, from what kinds of care are emphasized to how much they will be paid for it."

California spends much less. The downsizing and phasing out of state-run developmental centers here began decades ago. However lack of oversight of regional centers and other privately-run group homes that continue to take over care for the developmentally disabled - and the influence those providers have in shaping policy - are real concerns here as well.

Protection and Advocacy and the Department of Justice (DOJ) have a role to play to ensure that the disabled are protected and that the increasingly limited funds earmarked for their care are spent in support of effective and appropriate programs - not to benefit the coffers of nonprofit corporations. We can only hope that the squeeze on budgets and this kind of spotlight on executive pay will push them to step up more forcefully.

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Disability Rights California

A Message from PHA Co-PresidentMary O'Riordan

Dear Members and Friends of PHA:

Well, it's almost that time of year again when we elect new people to the board and re-elect some of the same people. That will all happen at the end of the meeting on Saturday, September 10, 2011. I have served for 8 years as president and one year as co-president with Steve Doherty. We get older, we get wiser, and the problems change, but they never go away.  We resolve some issues but others arise – and so it goes.

Roy Whitley got to stay at SDC and we got the definition of the Richard S clarified so the case workers can no longer misuse it to move people from SDC. We got legislation introduced twice – only to see it not pass due mostly to the strong opposition by DDS.

In spite of all that we have made some progress especially in the areas of getting the message out there and having our developmentally disabled citizens treated fairly and having appropriate services available to them.

The part I find most distressing is that with all our advocacy and hard work in so many areas, we were not able to prevent the downsizing of SDC and the eventual closure, unless something changes.
There is no substitute for the experience and expertise that has been acquired over the 100+ years at SDC. Every family member needs to fight to keep these services. Every family member needs to know that they have rights and they are the person who has the final say in where their family member lives, so exercise your rights and fight for your loved ones who live at SDC and want to stay there.

If you are not a conservator, you need to be. You may call me or Pat Walter at any time if you need information or a referral to an attorney. Our contact information is in another area of the Gazette.
It has been an honor and a privilege to have served as President of PHA and advocate for the precious residents of SDC. We are all families united by our concern for our developmentally disabled children. See you all in September.

Mary O'Riordan
Co-President
Parent Hospital Association

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The next board meeting of the Parent Hospital Association is scheduled for Saturday, August 13, 2011. The next general meeting will be 10 a.m. on Saturday, September 10, 2011 in McDougall Hall on the SDC campus.

For more details on PHA scheduled meetings, visit blog.parenthospitalassociation.org/pha-meetings

Update on developmentally disabled man caught in prison system

A few weeks ago we posted information about a developmentally disabled man named Malcolm who has become mired in the legal system and was in danger of being transfered to San Quentin. (When the disabled slip through the cracks, 6/09/2011)

PHA was able to help by contributing some much needed funds towards hiring a new attorney sympathetic to his special issues. His sentencing hearing, scheduled for June 22, 2011, was postponed. However, the judge did not allow a change of attorney.

Here is the latest update, from Mary O'Riordan, PHA Co-President:

I am sending this message to as many people as I can in hopes that everyone who receives it will forward it to others and let the world see what is happening to our vulnerable citizens -- those who are mentally retarded and/or developmentally disabled in other ways, including autism. Malcolm's is just one example -- but shows one mother's anguish. The Regional Centers won't come to the hearings with her, Disability Rights won't return her calls, so she came to us at PHA for assistance. How much can we do for her? Not very much under the present system, but we hope to bring attention to what is happening to her son and try to be supportive and comforting.

Her son is now 33 years old, he has been diagnosed as mentally retarded and autistic since he was 3 years old, has been in special education and special projects throughout his life. He got into an altercation with his boss and quit and sent his boss (what is considered) a threatening letter, which he stuck to his boss' door with bubble gum (how innocent). He later set fire to a napkin in a court room bathroom - no harm done - but the alarms did go off - so now he is considered a terrorist and an arsonist.

He has spent 18 months in Santa Rita jail and now they are planning to send him to San Quentin to "teach him a lesson". His mother found another attorney to represent him to replace the cold-hearted attorney who was assigned to him and now the judge said he is not inclined to change attorneys at this late date. This unfortunate young African American man is a large person - but is very sweet and innocent and his disabilities are obvious. Why are they doing this and how do we stop it?

Again, I would like to point out that this is what is happening as a result of the closure of the developmental centers and all the legislators know about it and the Department of Developmental Services knows it and the regional centers know it, yet they continue on this path. The prisons are now the answer for all vulnerable people - not just mentally ill people anymore, but also the mentally retarded, some of whom are functioning at not more than 4 years old, like Malcolm.

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.