Join with PHA for 2011

This is the time of year when Parent Hospital Association (PHA) members are asked to renew their memberships and new people are invited to join. The letter below from boardmember Mary O'Riordan was included in the membership packet that was mailed to members, and we reprint it here to remind everyone how important it is to join together in supporting the developmentally disabled community of Northern California and the continuation of services at SDC.

If you would like to join with the PHA for 2011, membership dues are $25 Individual or $30 Family and can be mailed to Membership Chair, Parent Hospital Association, Sonoma Developmental Center, P.O. Box 237, Eldridge, CA 95431. Please include your name, address, phone number and email, along with your family member's name at SDC, the unit where they live and your relationship to them. If you prefer to receive a membership form to mail with your dues or donation, email us at info@parenthospitalassociation.org.

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For many years now, families and those who are advocates for people who live in our developmental centers have been trying to get someone - particularly our community leaders and social services representatives - to understand that the Olmstead Decision and the Lanterman Act - as presented by those with an agenda to push - is a lie. They claim that thousands of residents of our Centers want to leave there, and go on to ridiculously assert that even those Center residents who cannot speak a word have expressed a desire to leave.

Of course, nothing could be further from the truth.

The Department of Developmental Services (DDS) knows it, the Regional centers know it, the vendors and lobbyists and those seeking to selfishly promote their own agencies and agendas know it. And still, nothing has been done to stem the tide of center closures around the State.

But I'm writing today because I want to be clear about one thing: If SDC and all the remaining Centers close, we'll have only ourselves to blame.

We'll be at fault for not fighting hard enough, for letting those with an agenda succeed in intimidating and convincing us. We need to value our own rights and options highly enough and take seriously our responsibility to stand up for our developmentally disabled loved ones who usually cannot speak a word.

Every month I hear about another family whose loved one was forced out of SDC against the family's wishes - a result of bullying by case workers and representatives from the regional centers, and sadly, even case workers at SDC who are cooperating with them. So their child, sister, brother, aunt, uncle, etc. is forced out into a community home, even if he or she has lived at SDC for over fifty years. Imagine if someone forced you out of your lifelong home and sent you to live with someone else, away from your friends and caretakers.

So I often feel families are failing at exercising their options and rights in standing up to these agencies. There is a monetary incentive for the regional centers to move people from SDC, so be mindful of that.

This is not to say we haven't tried: We have stressed to the various associations of parents and families that family members (not the State) must have conservatorship over their developmentally disabled loved ones; families have spoken in overwhelming numbers that they want their relatives to remain at SDC; we at PHA have tried to raise money and make resources available to families who are fighting to keep their loved ones at SDC; and we have printed this information in every Eldridge Gazette. You just need to call us and let us know!

But we have to do more. I have served for almost nine years as President of PHA and have been fighting against these agencies and case workers who want to see SDC closed, and if there is one thing I could leave PHA with it is the importance of saying "no." NO. NO. "No, you cannot go against my wishes and move my son/daughter out of SDC. I am his/her legal guardian." That's it. And keep saying it, no matter how many of them gang up on you. Ask us for help and ask us to be there with you. They cannot force you to remove your loved one from their home at SDC. Perios.
The population of SDC is now 610. Typically, when the population reaches 400, the state puts the center in the budget for closure. That is why every family counts.

It's a well-known fact that the level of care for medical and dental care is not readily available in placements other than the developmental centers. Removing older people from SDC is particularly troubling as that is when they need the professional medical services the most.

That said, I want to make sure I stress that your loved one's living situation is entirely your choice. If you don't feel that SDC is the right place for him/her, that is perfectly reasonalbe. I just don't want to continue to hear from and talk with families who wanted to remain at SDC but were, in their words, bullied into changing their minds.

If you want to talk more about these tactics by case workers and learn how the Lanterman Act actually protects families so that you can be prepared, join our teleconference meetings, which will be starting up again the first Monday evening in February at 7:30 p.m. You need to contact me to get the call-in number. Email me at moriordan [at] aol [dot] com. The teleconference call is free and well worth your time.

The services at SDC were not always what they are today. In years past, it was overpopulated and understaffed. What you see today is what parents and other family members have fought so hard for to bring it to this level of care - a state-of-the-art facility. It doesn't do much good for us to work so hard if families aren't willing to fight also when confronted by people with an agenda to move their family member to a group home. Again, keep in mind, there is a financila incentive for the Regional centers to remove people from SDC to homes in the community, so you are sure to get a lot of pressure. Standing up for your family member's rights and preserving SDC and the wonderful services provided there is the only way to continue these services. It all comes down to you.

We have a questionnaire, which I hope everyone will fill out and return to us so we can determine what families really want. In what ways is SDC important to you? Are you interested and willing to fight to keep it open? We need to hear from all families so we can proceed to work for you as best we can, but we need to know what you want. A copy of the questionnaire went out with the yearly membership packets. If you would like a copy but did not receive one, please email Parent Hospital Association at info@parenthospitalassociation.org and we will see that you get a copy.

Thanks again and have a Joyful Holiday and Happy 2011.

Mary C. O'Riordan
Parent Hospital Association
Membership Committee

Save the Date for 'Heroes with Heart' 2011

Plans are well underway for the Parent Hospital Association's next annual fundraiser on behalf of the clients and programs of the Sonoma Developmental Center.

If you are on our mailing list, you should have already received your 'Save the Date' postcard. The date is March 19, 2011 - one week earlier than usual, and we will be celebrating at the same great venue: Cline Cellars Winery in Sonoma Valley.

We look forward to seeing you at our Heroes with Heart fundraising event. It will be another wonderful evening with families and friends of the residents of SDC, and an opportunity to support the efforts of the Parent Hospital Association.

If you'd like to attend, why not book early?! You don't need to wait for our official invitation. If you would like to reserve your place - or if you have an item for our auction - send an email to info@parenthospitalassociation.org and we will follow-up.

More information will be posted soon as arrangements progress. In the meantime, remember to Save the Date: Saturday, March 19, 2011. We'd love to see you there!

Updates: Tree Lighting Ceremony

Final (12/15/10): Due to unforseen circumstances and the expected continuation of the rainy weather, this year's Tree Lighting Ceremony had to be canceled. Fortunately, many people stepped in to make sure a festive air prevailed! Thanks go to all the areas and departments who participated by decorating a tree, with a special thanks to Plant Operations for lighting the big tree and the Peace On Earth sign.

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Latest (12/14/10): The tree lighting ceremony rescheduled for today (after being canceled from its original date of 12/8/10) has been postponed again. We will keep up updated as we learn more.

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Update (12/8/10): The tree lighting ceremony has now been tentatively rescheduled to Tuesday, December 14th, from 3:30 pm to 5:00 p.m. It will be held at Harney Circle - outside the gymnasium/amphitheater.

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The annual tree lighting ceremony previously scheduled for 3:30 p.m. today has been canceled. It may be rescheduled for next week - we will keep you posted.

Annual Tree Lighting Ceremony at Sonoma Developmental Center

Join in the holiday fun at Sonoma Developmental Center at the annual Tree Lighting Ceremony, this Wednesday, December 8th, from 3:30 to 5:00 p.m., at Harney Circle on the SDC campus.

This event is always a special highlight. We hope to post pictures later in the week from the festivities, but come celebrate Christmas with us at the Center if you can.

Annual Holiday Open House Set for Dec. 1 at Sonoma Developmental Center

The Sonoma Developmental Center's annual holiday open house a wonderful time to get together, visit and celebrate another year of caring at SDC. Sponsored in part by Parent Hospital Association, this year's event is set for Wednesday, December 1, from 1:00 to 4:00 p.m. in the Aro Building.

Spotlight on Regional Center Spending in California

While budgets for social services are being scrutinized and slashed, spending at the regional centers in California receives no such public oversight. In fact, even as the state's developmental centers continue to be closed and residents moved out of the few remaining -- ostensibly to save money, spending at California's 21 regional center systems seems to be flying high.

An article in the Sacramento Bee this weekend spotlights the issue (California regional centers spend without public scrutiny, by Jack Chang) and underscores the concerns of many that the move away from the established developmental centers to the regional center system may not in fact provide the cost savings the state seeks -- while at the same time, the level of care for the state's developmentally disabled is not being maintained.

Putting the care of such a vulnerable population in the hands of private facilities, albeit non-profit, with limited public oversight is a decision certainly worth re-evaluating before the last developmental centers are abandoned and that opportunity of choice in care eliminated.

News Update: Ruling Issued in North Bay Regional Center v. Maldonado Case

The website www.leagle.com has published a notice on the November 8th ruling in the petition for reimbursement of legal fees in the case of Roy Whitely, a 40-year resident of Sonoma Developmental Center who successfully won his right to remain at SDC after a lengthy court battle.

You can read a complete account here: IN RE CONSERVATORSHIP OF ESTATE OF WHITLEY

iPad Puts New World in the Hands of Disabled

Visual and intuitive and operated from a simple touchscreen, Apple's iPad has proved a godsend to some severely disabled people. Compared to other devices designed to make communication easier and put computer technology in the hands of the disabled, it is relatively inexpensive. Apple introduced it just this past April, and for those who have put it to the test, it looks to be an easy to use and accessible option - very promising for people with mobility and communication problems.

A recent article in the New York Times (iPad a Therapeutic Marvel for Disabled People) highligts the value of the new touch screen mobile technology, in particular for a young boy in Brooklyn who has great difficulty moving at all on his own but, because of the sensitivily of the iPad's screen, was able to independently activate the device and open a program and now reads books on his own using the device.

According to the article, "parents of autistic children are [also] using applications [on the iPad] to teach them basic skills, like brushing teeth and communicating better."

Glenda Watson Hyatt, a blogger based in Surrey, British Columbia reviewed the iPad last May. She is afftected by cerebral palsy and found the iPad's responsive touchscreen a bit too sensitive for her. Unintended movements and tapping means screens change or extra pages flip, but overall she did find it a useful tool. (see: The iPad as an Affordable Communicator: Initial Review)

It's not considered medical equipment, so it might be difficult to get insurers to cover the cost of the device itself, but the applications may be another story. If you're interested in finding out more, there are additional stories of how the device does and doesn't work for various people in the Times article - and you can try it for yourself at the nearest Apple store.

Join SDC for Lunch November 9

The Sonoma Developmental Center (SDC) marks their 2010 Giving Campaign with a Pasta Feed Luncheon catered by Zack’s Catering.

Sonoma employees and residents, as well as the public, are all invited. Spaghetti with marinara, pesto or meat sauce will be served, along with salad, bread and beverage for just a $6 donation.

All profits from this year's lunch will go directly to Social Advocates for Youth.

The event will be held on Tuesday, November 9th, from 10 a.m. to 2 p.m. in McDougall Hall,  McDougall Hall is located on the corner of Sonoma and Wilson on the SDC campus in Eldridge.

This is the 5th annual pasta feed held for to raise funds and awareness of local charities. SDC's annual Giving Campaign raises staff awareness of the many non-profit organizations in the local community that benefit from their help. Representatives of several deserving non-profit agencies will be at the lunch with information on their organizations and programs.

For more information about the Pasta Feed, contact Robin German, at 707-938-6518

UC Davis MIND Institute Kicks Off Lecture Series on Neurodevelopmental Disorders

The UC Davis MIND Institute’s Distinguished Lecturer Series began its ninth season this month with a presentation by Yale University researcher Kevin A. Pelphrey, Ph.D., on Neural Signatures of Atypical Brain Development in Autism.

The monthly presentations by nationally and internationally-recognized researchers in neurodevelopmental disorders continue through June 2011. They are intended for both specialists and community members and are free and open to the public with no reservations required.

Upcoming lectures include:

Mark F. Bear, Ph.D., Massachusetts Institute of Technology
Lecture Topic: Fulfilling the Promise of Molecular Medicine in a Developmental Brain Disorder
Lonnie Zwaigenbaum, M.D., University of Alberta
Lecture Topic: Early Developmental Trajectories in Autism Spectrum Disorders
Stephen P. Hinshaw, Ph.D., University of California, Berkeley
Lecture Topic: Attention Deficits and Impulse Control Problems: Mechanisms, Etiology and Multimodal Intervention
Daniel S. Pine, M.D., National Institute of Mental Health
Lecture Topic: Research on Pediatric Anxiety: Using Neuroscience to Generate Novel Treatment
Helen J. Neville, Ph.D., University of Oregon
Lecture Topic: Experiential, Genetic and Epigenetic Effects on Neurocognitive Development
David C. Bellinger, Ph.D., Harvard University
Lecture Topic: The Burden of Childhood Neurological Diseases of Environmental Origin: A Comparative Analysis
Joseph D. Buxbaum, Ph.D., Mount Sinai School of Medicine
Lecture Topic: Genetics of Autism Spectrum Disorders: From Genes to Novel Therapies
Elisabeth M. Dykens, Ph.D., Vanderbilt University
Lecture Topic: Insights into Prader-Willi and Other Genetic Syndromes

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The UC Davis MIND Institute (Medical Investigation of Neurodevelopmental Disorders) is a collaborative international research center, committed to the awareness, understanding, prevention, care, and cure of neurodevelopmental disorders. In 1998, six families, five of whom have sons with autism, helped found the Institute. Their intent was to bring together experts from diverse disciplines including neuroscience, education, molecular biology, developmental pediatrics, occupational therapy and psychiatry in order to work together to curing neurodevelopmental disorders, starting with autism. The Institute's research projects have since expanded to include Tourette syndrome, fragile X syndrome, ADHD and chromosome 22q11.2 deletion syndrome.

You can find out more about the UC Davis MIND Institute at www.ucdmc.ucdavis.edu/mindinstitute.
For more information about the Distinguished Lecturer Series, contact Laura Lacy, Ph.D., at (916) 703-0254. Full details and a complete lecture schedule are also available by visiting www.ucdmc.ucdavis.edu/mindinstitute/events/dls on the web.

Ruling spotlights problems for developmentally disabled in California's prisons

At the end of August, the Associated Press reported on a preliminary ruling issued by U.S. District Judge Charles Breyer in which he sharply criticized California's prison system in their handling of developmentally disabled inmates. (see: Judge pans Calif.'s mentally disabled inmate care)
Correction officials had petitioned to end the court oversight ordered after a 2001 settlement, but in his preliminary ruling, the judge found that California's prison system still does a poor job of identifying and caring for developmentally disabled inmates nine years after the state agreed to improve services — and he rejected the request to end court oversight.

Instead Judge Breyer ordered the California Department of Corrections and Rehabilitation to submit a new plan to improve employee training and to better identify developmentally disabled inmates, saying he doubted the state can correct the problems on its own.

Attorneys were given twelve days to file objections before the proposed ruling was made final.
Although the state had argued during a six-day trial in May that conditions have improved to the point that it is no longer violating inmates' constitutional rights, other testimony at the hearing suggested otherwise and the judge agreed.

Findings and testimony included:

The system as a whole appeared indifferent to the needs of these inmates despite the efforts of some employees.
Inmates are regularly verbally, physically, and sexually assaulted, exploited, and discriminated against in California prison.
Developmentally disabled prisoners are punished for violating prison rules that they do not understand, and are punished at hearings which they cannot comprehend.
They regularly have their food and property stolen, or give it up to buy protection or help from other inmates. They often lack the help they need with basic hygiene, or with getting routine medical treatment.

Studies show as many as 4 percent of California's inmates are developmentally disabled, yet the prison system has identified and treats less than 1 percent. Advocates hope that this latest ruling will force the State's prison system to make the changes necessary to safeguard the developmentally disabled under their supervision.

The related but unstated concern is how many of these vulnerable individuals end up in the prison system to begin with — but that's a subject for another post perhaps.

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The Prison Law Office, a nonprofit public interest law firm, filed the original lawsuit in 1996 and fought the state's attempt in this case to end court monitoring.

Prison Law Office
1917 5th Street
Berkeley, California 94710
(510) 280-2621

New California Budget Includes Lanterman Closure Plan

Last Friday, on October 8, 2010, California legislators finally passed this year's long overdue budget.

The California Association of Psychiatric Technicians (CAPT) are reporting that the new budget includes provisions for the closure of Lanterman Developmental Center.

According to information on the group's web site, the budget language, which was not made public until last Thursday includes the following:

• Extend many of the arrangements and provisions used in the closure of Agnews Developmental Center toward closure of Lanterman Developmental Center.
• Provide that the use of department state employees is in effect for up to 2 years following the transfer of the last resident of Lanterman Developmental Center.
• Require the Department of Developmental Services to prepare a report on the use of the department’s state employees in providing services in the community to assist in the orderly closures of Agnews and Lanterman Developmental Centers.
• Require the report to be submitted with the governor’s proposed state budget for the 2012–2013 fiscal year to the budget committees of both houses of the Legislature and annually thereafter.

CAPT Lanterman Chapter President Brad Whitehead noted in the report that, while the budget includes items called for by families and concerned staff to improve continuity of care, opposition remains to the closure of this vital and irreplaceable center.

:: To find out more about the closure of Lanterman Developmental Center, visit the Save Lanterman coalition’s website at www.saveldc.org.

:: You can read the full CAPT report at Just-passed budget includes Lanterman closure plan on www.psychtechs.net

Federal Law Mandates Residential Choice for the Developmentally Disabled

For people with developmental disabilities and their families, it is important to know that choice in care and services exists - and that it is the right of the developmentally disabled and their family members to exercise that choice.

There are agencies and organizations that can help find services and offer support in choosing the most appropriate care for the disabled individual.

VOR, an organization that speaks out for people with mental disabilities and works to unite advocates and educate and assist families, organizations, public officials, and individuals concerned with the quality of life and choice for persons with mental disabilities, is one such organization. VOR includes good information on their website to help the disabled and their parents and advocates understand and access the full array of residential options, including community and facility-based care.

Their information on provisions in federal law for the right of the disabled person and their families to choose residential care is especially interesting and helpful. (See Choice Defined in Law and Use in the Toolkit for Families section of their website.)

Here is just one example cited:

The Developmental Disabilities Assistance and Bill of Rights Act, 42 U.S.C. §2001(c)(3)
(c) POLICY. -It is the policy of the United States that all programs, projects, and activities receiving assistance under this title shall be carried out in a manner consistent with the principles that-
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(3) individuals with developmental disabilities and their families are the primary decision makers regarding the services and supports such individuals and their families receive, including regarding choosing where the individuals live from available options, and play decision-making roles in policies and programs that affect the lives of such individuals and their families.

Again, from the VOR web site:

In the landmark Olmstead v. L.C. ruling, the Supreme Court recognized the need for a range of services for people with mental retardation or other disabilities. This decision  responds to the varied and unique needs of the entire disability community: “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.”  119 S. Ct. 2176, 2187 (1999).

You can find more information on the Olmstead case on the VOR web site at The Olmstead Decision and the Disability Community.

More information on federal provisions of choice for the disabled can be found at Residential Choice for People with Disabilities.

Michael K. Gains Residency at SDC

Gail Bowen has been fighting since the closure of Agnews Developmental Center to have her son transferred to Sonoma Developmental Center (SDC). The San Andreas Regional Center has fought her in every way, ignoring the rights as a parent and conservator given to her in the Lanterman Act.

We posted a short article this past July about the latest developments in Michael K.'s case. (Road to residency at SDC hits another snag for one disabled man) Well, the matter has finally been resolved, and Michael will be moving to SDC.

VOR has published a review of the case on their website. (California: Procedural win is moral victory for family) It will give you an idea of what Gail has been put through in her efforts to get the best appropriate care for her severely disabled son. We also recommend that you click through and read the entire case. It is really educational and something all PHA members - or anyone with a severely disabled person in their family - need to be aware of.

Save the Date for the Next PHA Fundraiser - March 19, 2011

It's still quite a few months off, but preparations have already begun for the next gala PHA party and fundraiser. We're excited to be at Cline Cellars in Sonoma Valley again and very much appreciate the winery's generous support.


So save the date: Saturday, March 19, 2011. It's a week earlier than usual, so be sure to mark your calendars. If you're on our mailing list, you will receive a reminder, and then we'll follow up with invitations early next year.

Wine - hors d'oeurves - silent auction - music - dinner - live auction: We expect it to be every bit as enjoyable - and then some - as our past events. Hope you can attend - we'd love to see you there!

Former Agnews Resident Receives Good Care in Community

Agnews
Developmental Center

The Parent Hospital Association recently received a letter from a parent of a former Agnews Developmental Center resident. The letter was printed in the latest issue of The Eldridge Gazette, but we thought we would also post it here for those who aren't on the Gazette mailing list.

Concerns are often raised over the care available to clients at regional centers and other community-based homes as compared to the services received at developmental centers. Part of our role is to assist families in finding the most appropriate placement for their developmentally disabled family members and to advocate for the developmentally disabled, and so we often publish these concerns and the problems some members have experienced in the Gazette and on this blog.

Joanie's concern is that the instances when the system outside developmental centers does work for people has not been well represented and she has a very good experience to report with her son Brucie, which she relates in her letter. The letter was addressed to PHA President Steve Doherty. You can read it in its entirety below. Watch the Gazette and this blog for further comment and follow-up.

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Dear Mr. Doherty,

I receive the Eldridge Gazette and I was very disturbed by much of what was written in the latest edition regarding the closure of Agnews. It is very unfair to spread misinformation to the families of the Sonoma residents. It only serves to create tremendous worry and fear when quite the opposite is the truth.

My name is Joanie Pepper and my son Brucie was a resident of Agnews for over 30 years. Ever since Oct. of 2007 Brucie has been residing in a beautiful 962 home in the city of Morgan Hill less than a half hour drive from our house. I was able to decorate his new home with the things that I know have special meaning to him. My entire family is delighted with the wonderful life that Brucie is leading. He receives excellent medical care, takes part in dozens of trips out into the community every month, enjoys delicious home cooked meals and is cared for by staff that is very loving and dedicated. I feel as if they are part of my family. About 50% of the staff are former Agnews employees and the other 50% come from the community.

There are weekly visits from a dietitian, an occupational, physical, and recreational therapist. His housemates were on his unit at Agnews and are therefore familiar faces. The staff is able to give Brucie and the other residents a great deal of one on one attention. The transition into these new homes was very well thought out. And, most importantly, Brucie is very happy and has truly blossomed in this nurturing environment. The change in his life is miraculous and I realize now that had I known what his life would be like, I would have been welcoming the change.

Hopefully, all the lessons learned will be utilized in any future closures of a Developmental Center. This experience has taught me that sometimes when we fear change, that change can surprise you by creating a situation that is better than you had ever imagined.

When Agnews was slated for closure there was no parent more concerned than I about what the future had in store for my son. I thought that a home in the community was not ever going to be able to offer him the care he had at Agnews. Through the efforts of Agnews parents, siblings and other advocates, major bills were passed that resulted in the creation of homes that had never existed before. We now have the 962 homes for the medically fragile, the SRH homes for the behaviorally challenged, Family Teaching Models , AB 2100 to establish houses that would be the clients homes in perpetuity and AB 1378 providing state employees the ability to work in these residences and maintain their state salaries and benefits. In addition, there was a Quality Management System put into place by D.D.S. to oversee the care of our loved ones after they left Agnews and were situated in the community. And, very importantly, careful planning has gone into the transition of the medical and dental care. It is also interesting to note that the medically fragile folks are doing very well and have been able to go on field trips with great success.

There were several statements made in the Gazette that are not so. One example is, "The fear is that later these homes will not have licensed staff, but just be nice homes with granite counters." The legislation that was passed requires that the staff be licensed.

Another sentence states that, "No one who is moved out of the developmental center can come back to it for medical and dental care." In fact, there has been an Out Patient Clinic at Agnews for clients to attend. There are HMOs that have doctors in each community that care for our loved ones.
There was another statement that indicated that there should not be a speaker at your meeting who would say anything in favor of community placement. Why should the truth be hidden from the Sonoma families? We have seen first hand that community homes can be established that are truly wonderful and provide enriching lives for our children and siblings.

Another sentence stated that, "An inordinate number of people died just prior to or just after the closure of Agnews". In the history of any Developmental Center there are going to be deaths. Many of these folks are very fragile and some die due to old age. It is blatantly unfair and untrue to say that these poor souls passed away because Agnews was closing.

The Gazette states that a member of your parent group was depressed because there was one parent from CASH/PCR who had been against the closure of Lanterman, who now spoke in support of the closure. Isn't it possible that that parent had done some research and realized that perhaps a good home in the community was attainable?

Yet another statement reads, "The experiment to close developmental centers has not been working". Actually, the closure of Agnews has been working and working well. Yes, in the past years there were unsuccessful closures, but if the Agnews closure plan were to be implemented in future closures, there would be many more success stories. Believe me, I am not standing alone in my story. Every family I know is happy with the lives their children are now living. I hope that Sonoma will stay open for many years to come, but should it eventually close, the families should know that the future of their loved ones can be bright.

I realize that we have no crystal ball and cannot predict that a future closure of any DC would exactly duplicate that of Agnews. However, your newsletter had specific misinformation that was particular to the Agnews closure. I feel that it is important to make sure that that information is corrected.
I would be happy to give any Sonoma parent a tour of my son's home.

Thank you for your time.

Very Sincerely,
Joanie Pepper

Services for Developmentally Disabled Face Cuts in Proposed Budget

According to the CAR summary, the governor’s revised state budget for fiscal year 2010-2011 projects an estimated $19 billion deficit.

The deficit is a product of revenue shortfalls and increases as a result of state tax revenue shortfalls, lawsuits that have stopped major social services cuts from going forward (failed budget solutions), and some program spending due to increased caseloads. This year some $2.9 billion in new cuts to the general fund have been proposed for health and human services programs. Over $500 million in cuts have been sustained by the developmental services delivery system in the past few years.

From the CAR summary: "The current threat to vital services is real and could result in complete loss of programs and benefits. The administration has characterized the cuts as ‘terrible’ and appears relentless in its attempts to accomplish them regardless of the human or economic cost."

The Governor has support for the proposals from Republicans, while Democratic State Senator Darrell Steinberg seeks, among other ideas, to rescind some corporate tax breaks to pay for human services. Various proposals to close some of the gap in revenues continue to be discussed but
legislators appear cautious about altering tax rates and structures.

You can read more about proposals in the state budget and potential impacts in the full CAR memorandum. Download a copy by clicking here (Word document) - and keep a close watch on Sacramento as budget negotiations progress. We will be.

SDC Troupe Presents 'Mary Poppins'

Beginning September 22, The Eldridge Performing Arts Company (EPAC) at Sonoma Developmental Center (SDC) presents a two-weekend run of 'Adventures with Mary Poppins'. The annual production stars both SDC employees and clients and is a highlight every year.

The EPAC was established in 2005, the idea of former music therapist Melodie Mitchell. It brings together the performing talents of both clients and staff who reside and work at Sonoma Developmental Center. EPAC has produced musicals including Grease, Music Man and Wizard of OZ, and two musical reviews, the Best of Broadway and Musical Time Travel.

The client actors participate as leading characters, extras on stage, dancers, and band members, or they can also assist behind the scenes. All actors are assigned a staff stage coach to assist them when needed, and if called upon, to fill in if the client actor is unavailable to participate in the performance.

The theme for each performance is chosen by a vote of the previous year's cast. Ideas are solicited at the cast party after the last performance, and then all of the cast votes on what they would like to do. The cast is comprised of approximately 30-40 singers, dancers, actors and musicians.

Open auditions for this year's production began in early spring, and rehearsals have been held throughout the summer months. The hard work all pays off later this month.

The Eldridge Performing Arts Company: 'The Wizard of Oz'
September 22, 23, 29 and 30
7 p.m.
SDC Gymnasium

Volunteers would still be appreciated for this year’s show to help backstage, with rehearsals, props, costumes, and more. Those interested in participating can contact Becky Zyskowski at 938-6713.

State Auditor Shines Light on DDS and Regional Centers

The California State Auditor was charged by the legislature to take a look at the procurement and rate-setting practices at the twenty-one regional centers administered by the Department of Developmental Services in an effort to evaluate the cost-effectiveness of the centers. The report of their findings was recently released and indicates some areas of concern and certainly room for improvement in how California's regional centers function.

We first read about the audit at Trouble at Developmental Serivces by Anthony Pignataro on the Cal Watchdog web site. You can find a link to the full report in that article or download it by clicking here: August 2010 Report 2009-118 (pdf document).

The Old SDC Orchard is a Rare Treasure

We suspect many people don't know about the beautiful old orchard located on the hills behind Sonoma Developmental Center. It was planted between 1908 and 1912, back when SDC was known as Sonoma State Hospital, and until the mid-1960s, the 100-acre orchard was tended by both hospital staff and patients.

Along with the hospital's dairy farm, piggery, poultry house and vegetable garden, the orchard enabled the Center to operate nearly self-sufficiently for many decades.
The Center stopped using the orchard when staff and patient numbers began to decline and it could no longer be maintained, but many of the trees still remain and now the area known as The Old Orchards is part of Jack London State Park.

Last spring the National Park Service and California State Parks conducted an historic orchard management workshop at the SDC orchard. Old orchards are considered valuable historical landscapes in their own right, and the orchard at SDC is considered especially important because it's one of the few remaining historic orchards in California that was part of a self-sustaining farm colony.
Below is a video from that workshop. It includes some interesting historical views of the state hospital and beautiful shots of the old orchard in spring.

Eldridge Farm welcomes visitors

Besides the residential and medical care services provided to people with developmental disabilities, the Sonoma Developmental Center actually offers a variety of other community benefits. One such amenity is the Eldridge Farm.

Many parents and teachers of small children know about Eldridge Farm - for obvious reasons. Kids love to experience the animals! We think a lot of other people might not know about the farm or forget it's there to be enjoyed, so here's a reminder.

The Eldridge Farm used to be known as the Junior Farm. It has been in existence since the late 1960’s when Sonoma Developmental Center staff recognized the potential benefits to residents that animals could provide. Dozens (and dozens) of animals live at the farm including llamas, a variety of goats, pigs, ducks, geese, miniature horses, donkeys, Amazon parrots, cockatiels, chinchillas, chickens, roosters, rabbits, cats, guinea pigs, fish, pet rats and even a turkey - and visitors are welcome to come and see them all.

The Eldridge Farm is open every day from 8 a.m. to 4:30 p.m. and is wheelchair accessible. Entrance to the farm is free, but donations are accepted. There are plenty of picnic tables - bring a picnic and enjoy the day on the beautiful Sonoma Developmental Center campus.

The farm also welcomes volunteers. For information about volunteering at the Eldridge Farm or other volunteer opportunities at Sonoma Developmental Center, please contact the volunteer office at (707) 938-6213.

For directions to SDC, go to this link on the web. Once at the SDC campus, from Arnold Drive in Eldridge, turn east at the flashing light and continue through three stop signs and uphill until you see the duck pond on the right, about a half-mile from the light.

Eldridge Farm
Sonoma Developmental Center
15000 Arnold Drive, Eldridge, CA
707-938-6337
Hours: 8:30am to 4:30pm daily
Cost: Free

Ask about hayrides, tours and parties by special arrangement. (A campus use permit is required for events.)

VOR visit and lobbying experience

For those of you who receive a copy of The Gazette by mail, this post is a bit of a preview of something you'll find in the next issue. It was written by PHA member and supporter Kathleen Miller after an interesting trip back East. Thanks for reporting back, Kathleen.

This year at VOR’s Washington DC initiative I was lucky enough to be joined by my daughter, Molly Dillon. We met on Friday and began with hearing reports from other states, many of whom are having similar pressures to those we experience. I spoke about how our recent bill, which was to allow DD individuals in the community to use SDC as an emergency placement rather than go to jails or other unsafe placements, was squashed by DDS.

Many of the families from Lanterman were there and there was staff from Lanterman as well. It was fun to talk with them but sad to hear their concerns as well as those of families from other states. The shining example of a program that does work is in the state of Virginia. There, the state program not only provides housing for those who need it, but also acts as a resource center for those living in the community. That wonderful vision was one we tried to copy here at SDC before DDS made it clear that they would withhold support from anything that made positive sense for SDC. I briefly considered a move to Virginia.

Much of what I heard was twofold:

1. There is an attack on families as the primary decision maker for their DD loved ones. This thinking has many sides. People First, a group that at first glance seems positive, is quick to lump all DD in one basket and maintains that DD individuals should be their own decision makers. This is great for those who have the capacity but for many who need support making life’s tricky decisions, this does not work as well. Many DD are often easy to manipulate or else totally unable to make any kind of decision on their own behalf. If families are not allowed to decide for those individuals then lawyers and politicos and vendors will be all too happy to step in, often while maintaining that the DD individual is choosing for himself! HR 1255 is a bill that attempts to limit lawyers’ voices in place of family. It allows family to be informed and opt out of class action lawsuits that attempt to close all developmental centers. Please call your federal legislator and ask for his or her support of this bill!
2. There is a massive nationwide effort to close all developmental and state run facilities. We here in California are but one of many in the crosshairs of those in opposition. With money as tight as it is, things are likely to get worse before anything gets better.

I appreciate the opportunity to go to Washington, DC and speak on behalf of families. It was good to meet with others who stand with us and will join in our quest to preserve needed services for our loved ones and our voice to speak out on their behalf!
~Kathleen Miller

News from Nebraska underscores concerns for California developmental center clients

An Associated Press (AP) story published earlier this week underscores concerns for the well-being of severely disabled people after they are transferred from developmental centers. The article, Deaths of clients not reviewed, reports that in February 2009, forty-seven medically fragile patients were transferred from Nebraska's Beatrice State Developmental Center. Those transfers were ordered by Dr. Joann Schaefer, the state’s chief medical officer, "following a couple of deaths at the troubled center that she said showed the facility had become too dangerous for medically fragile residents," but a year and a half later, twelve of those transferred had died.

According to the article, Margaret Huss, board member of the Mental Retardation Association of Nebraska, had warned in a letter to state officials shortly after the forty-seven residents were moved that the sudden move could have “catastrophic results.”

Of most concern has been the lack of review of the transfers and subsequent deaths, which means little has been learned that can be used to reduce the incidence of deaths in the future. Regarding the death rate of transferred clients, Dr. Schaefer is quoted as saying, "I don’t know if there’s anything I’ve learned from that particularly."

Under an agreement with the federal government, the state had to form a special committee to help identify and promptly resolve preventable causes of death by reviewing deaths of Beatrice clients, including the medically fragile removed from the center in early 2009.
But to date, the committee has reviewed just three of the 12 deaths of medically fragile former residents who were moved and less a dozen other deaths of center clients since 2007. (AP)

In California, as state developmental centers continue to be consolidated and closed, similar concerns about the fate of clients who are moved to privately-run regional centers have been raised. In fact, reports of problems date back at least to the mid-nineties in the state, and in March of 1998, San Francisco Chronicle staff writers Edward W. Lempinen and Reynolds Holding won the prestigious Unity Award in Media for a yearlong investigation of life-threatening breakdowns in California's care of the developmentally disabled.

You can read more about that series of award-winning articles in our previous post, SF Chronicle series on care of the developmentally disabled archived. A complete list of the articles, as well as related articles, is listed at www.delicious.com/parenthospitalassociation/SFChron_coverage.

Road to residency at SDC hits another snag for one disabled man

The parents of "Michael K.", who have been working hard for his placement at Sonoma Developmental Center (SDC), got some welcome news recently in a favorable decision by the Court of Appeals, Sixth District. After two long years, it seemed Michael would finally be moving to SDC.
Unfortunately, no sooner had they received news of the ruling than they were informed by the San Andreas Regional Center that the center would be appealing the decision.

And so it goes. The process for families in choosing the most appropriate placement for their severely disabled relatives too often devolves into administrative and legal nightmares. As developmental centers continue to close in California and residency at the remaining centers is reduced, the stress and frustrations for families and the disabled can only be expected to continue.

PHA lends support to families and clients in matters of transfer to or from SDC in any way possible. If you have questions about a proposed transfer of a family member or placement at SDC, please contact us. You can email us at info@parenthospitalassociation.org and someone will contact you.

Below is the summary of the recent ruling by the Court of Appeals:
(MICHAEL K., on Habeas Corpus, No. H034209)

In 2005, the Legislature approved a plan to close Agnews State Hospital (Agnews). As part of the closure plan, it passed Senate Bill No. 962, which authorizes the Department of Developmental Services (DDS) and the Department of Social Services (DSS) to jointly establish and administer a pilot project for licensing and regulating Adult Residential Facilities for Persons with Special Health Care Needs, known as a Senate Bill No. 962 Home. Senate Bill No. 962 Homes are residences that can accommodate four to five individuals with significant developmental disabilities in a community setting.

Michael K. is a gravely disabled adult who had resided at Agnews since 1986. Gail B. and James K. are his parents and coconservators. When the Legislature approved the plan to close Agnews, San Andreas Regional Center (SARC) determined that Michael would be placed in a Senate Bill No. 962 Home. Gail and James objected because they wished Michael to be placed in Sonoma Developmental Center (SDC). In 2008, an administrative law judge upheld the objection and ordered SARC to place Michael at SDC.

But in 2009, the public defender, purporting to act on behalf of Michael and under the authority of In re Hop (1981) 29 Cal.3d 82, filed a petition for a writ of habeas corpus contending that Michael should be placed in the Senate Bill No. 962 Home. Gail and James appeared and objected. SARC appeared and asked for a court order for Michael's placement. The result was that the trial court granted the petition for Michael to be placed in the Home.

Gail and James appealed before the Court of Appeals of California, Sixth District, contending that the trial court failed to give deference to the administrative decision. Michael, represented by court-appointed counsel, countered that substantial evidence supported the trial court's order. SARC made no appearance on appeal. The Court agreed with Gail and James and reversed the order.

---

For more information about the provisions and guarantees for people with developmental disabilities in the State of California, familiarize yourself with the Lanterman Act.
To follow up on this particular case, reference:

MICHAEL K., on Habeas Corpus.
No. H034209.
Court of Appeals of California, Sixth District.
Filed June 22, 2010.
Certified for Publication
James K., Gail B., Monica B. Wegner, Randall Ricardo, Attorney for Appellants.
Michael K., Under appointment by the Court of Appeal, Jean F. Matulis, Attorneys for Respondent.

Call for Action to Stop Further DDS Cuts

On June 10, the California Association for the Retarded (CAR) sent out an alert urging people to call, write or fax the members of the Joint Budget Conference Committee.

At issue is a proposal to cut the Department of Developmental Services’ (DDS) budget by another 1.25% - a cut that, as CAR explains in the alert, is not necessary as the funds to cover the reduction can be found in an over-funded and under-utilized program.

Included in the alert was a sample letter members could use to send their views to the attention of the Chair of the Senate Budget Conference Committee, State Senator Denise Ducheny. The letter reads, in part:

The developmental disabilities service system has had its funding cut by over $500 million over the past two years. Providers are already subject to a continuing 3% cut and a further 1.25% cut has been proposed. The Assembly rejected this cut and we want you to do the same. It is our starkly real concern that this cut will bring the system to the verge of collapse as operating losses mount, service is diminished and people who need service are left without it.

The additional 1.25% cut is not necessary. There is a ‘prevention program’ operated by regional centers which is to receive $36 million for case management for 17,000 infants age 0-3 years, but only 4,100 infants have been enrolled. The program is over-funded and under-enrolled, and ought to be funded based on actual caseload – and the balance of the funding used to offset the elimination of the 1.25% cut. The estimated extra $25 million in the program can cover the funding cut and eliminate the need for it.

The CAR position supports the Assembly action to eliminate the cut and the related trailer bill language. (Trailer bills set forth the legislature’s directions on how funds are to be spent.)
People are asked to specify their support for the DDS version of the budget before the
Conference Committee, as approved by the Assembly.

If you would like to receive a copy of the alert and sample letter, email PHA at info@parenthospitalassociation.org.

You can also contact CAR at:
California Association for the Retarded
1220 S Street, Suite 100
Sacramento, CA 95811
(916) 498-1635
carforchoice@aol.com

Contact information for all members of the committee is as follows:

Assembly
Bob Blumenfield (D-Van Nuys), Vice-Chair
State Capitol, Room 6026
Sacramento, CA 95814
TEL - (916) 319-2040
FAX - (916) 319-2141

Connie Conway (R-Visalia)
State Capitol, Room 6027
Sacramento, CA 95814
TEL - (916) 319-2034
FAX - (916) 319-2134

Felipe Fuentes (D-Los Angeles)
State Capitol, Room 3098
Sacramento, CA 95814
TEL - (916) 319-2039
FAX - (916) 319-2139

Jim Nielsen (R-Biggs)
State Capitol, Room 6031
Sacramento, CA 95814
TEL - (916) 319-2002
FAX - (916) 319-2102

Nancy Skinner (D-Berkeley)
State Capitol, Room 2032
Sacramento, CA 95814
TEL - (916) 319-2014
FAX - (916) 319-2114

Senate
Denise Ducheny (D-San Diego), Chair
State Capitol, Room 5035
Sacramento, CA 95814
TEL - (916) 651-4040
FAX - (916) 327-3522

Bob Dutton (R-Inland Empire)
State Capitol, Room 5094
Sacramento, CA 95814 95814
TEL - (916) 651-4031
FAX - (916) 327-2272

Bob Huff (R-Diamond Bar)
State Capitol, Room 3048
Sacramento, CA 95814
TEL - (916) 651-4029
FAX - (916) 324-0922

Mark Leno (D-San Francisco)
State Capitol, Room 4061
Sacramento, CA 95814
TEL - (916) 651-4003
FAX - (916) 445-4722

Alan Lowenthal (D-Long Beach)
State Capitol, Room 4126
Sacramento, CA 95814
TEL - (916) 651-4027
FAX - (916) 327-9113

Glen Ellen community eyes main administration building at SDC for community center

Community members interested in renovating the main administration building on the Sonoma Developmental Center campus plan to meet again on Monday, June 7, to further explore their options. The old administration building has not been used in years and would require a fair amount of renovation to make it usable, but the potential in the historic building makes it seem well worth the effort it would take.

Preliminary plans, drawn up by architect and Glen Ellen native Mark Perry, include a theater and many rooms that could serve community groups and projects in the future. Perry is also optimistic that there are a variety of good funding sources available.

You can read more about Monday's meeting at Abandoned SDC building eyed as community center in the Kenwood Press. According to the article, the public is invited to attend the meeting, which is scheduled for June 7 at 2 p.m. in room 109 of the ARO building (King 29), on Holt Street, just off Arnold Drive, next to the baseball field in the center of the complex.

New social media website for families with special needs children

The latest venture of Vast Horizons, Inc., a San Francisco Bay Area company that operates assisted living homes, is a social network dedicated to families and caregivers of special needs children. Called VHI Connect it aims to connect individuals with special needs, their families, and their caregivers with information, services, supplies, and each other.

The site has not launched yet, but according to VHI is coming soon. Billed as a private network that will include an ecommerce facility and allow members to post classified ads as well as share information, expect the new VHI Connect network to differ significantly from other established platforms like Facebook and Twitter. Certainly there is real value in an online forum and gathering place dedicated to a community with a shared interest or need, which is why the Ning networks have been popular.

If you do use Twitter and would like to connect with others, you can also join The Coffee Klatch (@TheCoffeeKlatch) for a daily interactive forum on a variety of topics relating to both physical and emotional disabilities. Visit The Coffee Klatch website for discussion times and more information.
For more information about the new VHI Connect network, visit the VHI Connect website at www.vhiconnect.org.

Opportunity to Discuss the Lanterman Act Coming Up

Periodically the PHA schedules a conference call to provide community members the opportunity to talk about the Lanterman Act. The next teleconference is this Monday (tomorrow), May 3rd at 8:00 p.m.

If you would like to participate in Monday's call, please send an email to info@parenthospitalassociation.org and request the call-in number and code for joining the call. Prepare for the call by reading any part of the Act and then we can discuss it.

The Lanterman Act is an important resource for families of the developmentally disabled, and we encourage everyone to familiarize themselves with its provisions. For more information, read our previous post Lanterman Act is Key Resource for Families of the Developmentally Disabled.

Families and Staff Rally to Save Lanterman Developmental Center

On Monday, April 26, families and staff plan a rally to stop the planned closure of Lanterman Developmental Center in Pomona, Calif. The rally is organized to precede the April 29 state Senate hearing to consider the proposed Lanterman Developmental Center closure plan.

Date:    April 26, 2010
Time:   10 a.m. – 2 p.m.
Place:  Lanterman Developmental Center
3530 Pomona Blvd., Pomona, Calif. (front entrance on Diamond Bar Blvd.)

At least 100 people are expected to participate. The event is sponsored by the Save Lanterman coalition.

For more than 80 years, Lanterman Developmental Center has cared for thousands of Californians with developmental disabilities who depend on the facility’s unique combination of medical, therapeutic and rehabilitative round-the-clock services. The facility is now slated for  closure, primarily due to state budget cuts.

Save Lanterman coalition members say equal or better – or more cost-effective – services for these vulnerable individuals simply are not available in other settings, such as group homes.

In an announcement for the rally, Robert Hazard, whose sister lives at Lanterman, said, “The transfer of Lanterman residents to community settings would jeopardize their lives and those of others who rely on a community system that is not sufficient to care for everyone with complex medical and behavioral needs at the professional level required. There is no assurance that the residents will receive the services they need if they are moved to the community.”

“We believe a facility closure at the very least would be a highly disruptive experience causing clients great emotional and physical stress, and at the very worst would lead to dangerously inadequate care in inferior, little-regulated group homes,” said Tony Myers, a Lanterman Senior Psychiatric Technician, in the same announcement.

State senators will consider the formal closure plan at the April 29 hearing in Sacramento, choosing whether to adopt DDS’ proposal plan, to amend it or to oppose it. The Save Lanterman coalition asks members of the public to help them convince legislators to oppose the closure.

For more information, including legislators' contact details, visit saveldc.org. You can also add your name to a petition showing your support for Lanterman and its hundreds of residents.

Care Options Important for Developmentally Disabled

Concern over current plans to close some of the few remaining developmental centers in California stems in large part from the differences in care and services between the State-run centers and regional centers, where residents are transferred as State services are consolidated, downsized and eliminated.

Edward Lempinen wrote a series of articles for the San Francisco Chronicle in the late 1990s that brought attention to the downside of being moved to regional centers for many developmentally disabled people. (see: SF Chronicle coverage of developmental center news and issues from 1997-1998) Unfortunately, the issues spotlighted by Lempinen in his award-winning articles persist today.

Ana Mettler put a human face on all of these concerns and various reports when she related the story of her son Carsten on the VOR website. Carsten's journey to Sonoma Developmental Center illustrates the need for care beyond what a family can provide, the limits of care available from regional centers - at least for Carsten, and the benefits available to Carsten at Sonoma Developmental Center.

We're not sure when this story first appeared on the VOR website, but we thank Ana Mettler for telling it. And we're glad Carsten found a home at Sonoma Developmental Center. We are also determined that Carsten and others with developmental disabilities will always have the option of care from developmental centers in California.

The Eldridge Performing Arts Company to Appear at 'Heroes with Heart 2010'

Entertainment at tonight's gala fundraiser includes a special performance by the Sonoma Developmental Center's own 'Eldridge Performing Arts Company.' The group has appeared at previous PHA events, always with a lively and crowd-pleasing performance. The Eldridge Performing Arts Company is also one of the honorees at this year's event.

The Eldridge Performing Arts Company (EPAC) was established in 2005, the idea of former music therapist Melodie Mitchell. It brings together the performing talents of both clients and staff who reside and work at Sonoma Developmental Center. EPAC has produced musicals including Grease, Music Man and Wizard of OZ, and two musical reviews, the Best of Broadway and Musical Time Travel.

The client actors participate as leading characters, extras on stage, dancers, and band members, or they can also assist behind the scenes. All actors are assigned a staff stage coach to assist them when needed, and if called upon, to fill in if the client actor is unavailable to participate in the performance.

The theme for each performance is chosen by a vote of the previous year's cast. Ideas are solicited at the cast party after the last performance, and then all of the cast votes on what they would like to do.

According to Becky Zyskowski, SDC staff member and one of the group's coordinators, "Every year we hold auditions, and whoever auditions is guaranteed to be in the show. Rehearsals are two days a week for three and a half months, and then we have two dress rehearsals and four live performances. Every year the show is a sell out.

"The performances allow the clients to see what it's like to be involved in a community theater setting and a live stage production from beginning to end. At the end of each production the clients are awarded a bouquet of flowers and souvenir apparel. Each performance is a new and exciting experience for the actors involved, and it always shows on their face!"

Wiggins Introduces Bill Relating to Developmental Disabilities

On February 18, 2010, California State Senator Patricia Wiggins introduced SB 1129, an act that would add Section 4510.5, relating to developmental disabilities, to the Welfare and Institutions Code. The bill was re-referred to the Committee on Human Services on March 17, with a hearing and vote scheduled for today, March 24.

Below are notes on the legislation from the website www.aroundthecapitol.com:

Existing law vests in the State Department of Developmental Services jurisdiction over various state hospitals referred to as developmental centers, including the Sonoma Developmental Center, for the medical and nursing care of patients with developmental disabilities.

[SB 1129] would require the Director of Developmental Services to provide medical, dental, wheelchair repair and modification, orthopedic shoe, and other health-related services at the Sonoma Developmental Center, through the center's operation of an outpatient clinic, to persons with developmental disabilities who reside at the center, and also to individuals who reside in the surrounding community.

This bill would authorize the department to obtain status as a Medi-Cal provider in order to receive reimbursement for services provided to non-developmental center patients and would require the department to pursue other funding sources. The bill would make the provision of services to non-developmental patients contingent upon obtaining appropriate status as a Medi-Cal provider or otherwise obtaining sufficient funds through other funding sources.

This bill would require the costs of administering the program to be funded through existing resources of the department.

This bill would make legislative findings and declarations as to the necessity of a special statute for the County of Sonoma.

You can find more details and updates, including a copy of the legislation, by visiting www.aroundthecapitol.com. More information may also be available by contacting PHA's legislative consultant Mike Smith at irishmike (at) vom (dot) com.

Heroes With Heart 'Evening in the Emerald Isle' Just a Week Away

The Parent Hospital Association's big event of the year - our Heroes With Heart 'Evening in the Emerald Isle' gala fundraiser - is just a week away.

On Saturday, March 27, at Cline Cellars in Sonoma Valley, hundreds of supporters and members of the PHA community will get together for dinner, entertainment and a live and silent auction in support of the Sonoma Developmental Center and people with developmental disabilities.

If you don't already have your ticket, there is still time to join us. Tickets may be purchased as a block or individually. Catering this year is being provided by Rocket Catering in Sonoma. The preview tasting of the night's menu was wonderful - you certainly wouldn't want to miss the meal.

Donors have been generous this year, and the live and silent auctions will be exciting. Following are just a few of the items that came in early on:

• Gift Certificate to Raindance Spa at the Lodge in Sonoma
• Oil and Vinegar Sampler from The Olive Press
• Lunch at Flavor Bistro
• Overnight stay at the Lodge at Sonoma
• Tour and Tasting at Cline Cellars
• SF 49ers Football signed by Frank Gore
• Catered Firefighters' Dinner for 8 (This item was very popular last year!)
• Passes to the Sonoma Valley Film Festival
• trips to Lake Tahoe and Arizona

We also have a truly stunning collection of wine that has been donated for auction this year. The wines are too numerous to list here but include bottles from Arietta, Monte Bello Vineyard, St. Francis, Eisele Vineyards, Duckhorn Vineyards, Mazis-Chambertin, Chateau Potelle, as well as a Chateau Giscours Grand Cru Classé 1967 Margaux.

If you have any questions about this year's event, you can visit the event's page on our website or email info@parenthospitalassociation.org. If you would like to attend but have not yet reserved a ticket, email us soon so that we can have a place set for you. We hope to see you Saturday!

Sonoma Valley Footrace and Festival Coming to Sonoma Developmental Center

The Sonoma Valley Footrace & Festival returns to the Sonoma Developmental Center on May 22, 2010. The event includes both a challenging 10K on- and off-road run through the stunning landscape surrounding SDC and a 5K run that takes a mostly level course through the SDC grounds.

Enter the race of your choice. Awards will be presented to the top runners in various categories, and all runners receive a T-shirt. Adult participants will also receive a commemorative glass and tickets for beer and wine tasting at the Festival.

Both races start at 8:00 a.m. Advance registration fees are $25 for adults and $15 for children 12 and under. You can register online at www.active.com or by mail. See the event brochure for details. On race day, registration is $30 for adults and $20 for children and begins at 7:00 a.m. (Don't be late, or you'll be running to catch up!)

For those not running - and for runners after the race - a number of other activities and entertainments are planned. The Festival part of the day's events runs from 8:00 a.m. to 1:00 p.m. and includes:

• Live music from Harvey and the Wallbangers
• Children’s carnival attractions - including a bounce house, velcro wall and games
• Free fun run for kids at 10:30 a.m.
• Car show
• Beer and wine tasting starting at 9:00 a.m. (adults only, ID required)
• Food available for purchase
• Raffle
  

The Festival entry is free. There will be ticket sales for the beer and wine tasting, raffle, and the children’s carnival attractions and games.

For more information and to register for the race, visit the Sonoma Valley Footrace & Festival website (www.dds.ca.gov/SVFF).

You Are Cordially Invited - Heroes with Heart 2010

Final details are in place for 'Heroes with Heart 2010', the Parent Hospital Association's annual fundraiser. This year's event - just like last year's - takes place at Cline Cellars in Sonoma Valley. The date is set for Saturday, March 27th, and we would love to have you join us for the evening's festivities.

“An evening in the Emerald Isle”
5.30 pm Guest Reception & Silent Auction
7.00 pm Dinner & Live Auction

Visit our website for more details including the names of this year's honorees and the night's dinner menu.

The Master of Ceremonies this year will be Rich Walcoff, Sports Director of KGO Newstalk Radio. Rich Walcoff, who manages to blend a measure of entertainment and intrigue with the usual scores and sports highlights, has been adding his special brand of high energy sportscasting to KGO NEWSTALK AM 810 since July 1984, and we expect a lively evening.

For more information, and to attend this year's event, visit the Parent Hospital Association website or email us at info@parenthospitalassociation.org.

Lanterman Act is Key Resource for Families of the Developmentally Disabled

The Lanterman Developmental Disabilities Services Act (Lanterman Act) is the part of California law that defines the rights and responsibilities of persons with developmental disabilities. It also creates the agencies, including regional centers, responsible for planning and coordinating services and supports for persons with developmental disabilities and their families.

The central role of the Lanterman Act in the care of the developmentally disabled in California makes it a very important resource for caretakers and guardians, especially when it comes to advocating for residents subject to relocation. It's certainly well worth reading through in its entirety.
For example, some specific protections provided in the Lanterman Act include:

• Relocation must have been previously agreed in the resident’s IPP.
• The developmentally disabled person must receive the same level of medical and dental care as they received in the developmental center.
• The developmentally disabled person has the right to return to the developmental center for services.
• Postmortem rights include a mandatory autopsy.

Because of concerns about how the Lanterman Act is used or applied by the regional centers with respect to residents of developmental centers and the transitioning of those people to regional centers, the PHA recently began holding informal discussions on provisions of the Lanterman Act for interested family members. The first was held on February 1 and the next is planned for the evening of March 1, 2010. For details and directions for joining the conference call, email us at info@parenthospitalassociation.org.

California Department of Developmental Services Announces Plans to Close Lanterman Developmental Center

The California Department of Developmental Services (DDS) has announced its intention to close the Lanterman Developmental Center in Pomona, California. The announcement was made on Friday, January 29, 2010. DDS plans to submit a detailed closure plan to the state legislature by April 1, 2010. Legislature approval is required before beginning closure procedures.

The Lanterman Developmental Center, located on 302 acres of state-owned land in Los Angeles County, is an 82-year-old facility that provides 24-hour residential care for individuals with developmental disabilities, including cerebral palsy, epilepsy, down syndrome, autism and other lifelong conditions. Lanterman at one time served more than 3,000 residents. Today there are fewer than 400 people living at the facility, with the population declining 10 percent or more each year. Given the declining population and aging infrastructure, DDS determined that it is no longer economical to operate the facility.

In a press release announcing the planned closure, the DDS stated it will utilize a transition process that places each resident in a living environment appropriate for his or her needs. According to DDS this process is consistent with the U.S. Supreme Court’s Olmstead decision.

“The decision to recommend closure was not made lightly, as it will impact the residents served, their families, and the staff, all of whom have worked hard to make Lanterman Developmental Center a caring and positive place to live,” said Terri Delgadillo, Director of the Department of Developmental Services, in the press release announcing the planned closure. “The well-being of all who live and work at Lanterman will be of our utmost concern and priority as we move forward.”

DDS went on to state that it will work closely with the local regional centers in defining and developing resources that will support the needs of residents who are identified through the individualized planning process as appropriate for transition to the community and will work with labor unions to assist employees in finding opportunities for future employment.

According to Friday's announcement, in identifying Lanterman for closure, DDS sets in motion a process defined in statute (Welfare and Institutions Code section 4474.1) for closing developmental centers that will include extensive community outreach and at least one public hearing. All interested parties, including residents, their family members, employees, regional centers, advocates, service providers, public officials, representatives from the communities surrounding Lanterman, and others are encouraged to participate.

A detailed closure plan is expected to be submitted to the Legislature by April 1, 2010 (just two months from now). Legislative approval must be received prior to beginning closure activities, which are projected for fiscal year 2010-2011. 

For more information about the planned closure and details on upcoming meetings and hearing, contact Nancy Lungren, Assistant Director of Communications at DDS at 916-654-1820 or nancy.lungren@dds.ca.gov.

Visit www.dds.ca.gov for information about programs and services.