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.