PHA President Kathleen Miller has responded to the recent proposal to close developmental centers in California put forward by the ARC (
www.thearc.org) with the letter to state legislators posted below.
If you are a member of PHA, you recently received a letter in the mail from Past PHA President Mary O'Riordan about the ARC proposal, and more information is included in the upcoming edition of
The Eldridge Gazette. (Watch for you copy in the mail or check the
Resources Page to download the issue when it is available.)
Your thoughts and comments are important. If you would like to contact representatives regarding this proposal, addresses to a selection of legislators is included at the foot of this post. And remember, the March 9th
general membership meeting is our annual legislative meeting and legislators and their representatives will be in attendance to receive your comments and input.
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To: California state legislatorsFrom: Kathleen Miller, PHA President
I write to address the proposed legislation aimed at closing California's developmental centers, which may be carried by Senator Bill Monning and Assemblymember Holly Mitchell. This proposal has apparently gathered some support due to the Cal watch reports of allege abuse that has occurred in the centers. I write on behalf of family members and others who support a full range of options for individuals with developmental disabilities. Let me be clear, if this legislation is enacted, it would mean fewer options for those who need the most intensive level of care, and would ultimately be disastrous for many who now reside with the centers. I acknowledge that the centers have recently seen some dark days and understand that we must take every action to improve the living environment for those who rely on their services. Supporting closure, however, without first taking steps to address the severe shortcomings that also exist within the community, including lack of necessary services and its won instances of abuse, is simply shortsighted and wrong. Those who seek immediate closure are using the current difficulties facing the centers to further a long-standing agenda: Eliminate the centers as an option and force all of California's developmentally disabled citizens not a one-size-fits-all private care home. These homes have failed our most difficult to serve clients in the past, and unfortunately, little has changed.
Any proposal to close all the remaining developmental centers with one ill considered bill fails on many levels to take into consideration the complex factors involved with closure and its impact on california's most vulnerable citizens. As President of the Parent Hospital Association (PHA), an organization comprised of families, friends and loved ones of the residents of Sonoma developmental center (SDC), I would like to outline a few of the considerations involved with closing just one such center, that of SDC.
1. The Department of Developmental Services (DDS) does not support these closures. In fact, in recent hearing Terri Degadillo has stated that this is not the time for closure as the services outside of the centers that are needed to adequately support those residing in the centers do not yet exist.
2. Closing the centers is very costly. The Agnews closure is estimated to have cost half a million dollars per person in Agnews. With California just getting its fiscal picture together, it is not the time for such a rash and costly venture.
3. The community of Sonoma is very supportive of SDC. In a recent Town Hall meeting, co-sponsored by Cal Watch and the Sonoma Index-Tribune, the support for SDC was loud and clear. Over 140 local residents came out talk about the future of SDC and they were vocal and outspoken in their support. It is likely that many areas where sonata residents would be placed would not be receptive to individuals with serious and severe behavioral issues, which compose the majority of SDC residents. Placing behavior residents in areas where they are not welcomed may mean limiting their freedom and community access far beyond any current limits on them as SDC residents.
4. The Lanterman closure is not going smoothly, as many families are voicing concerns over a whole range of issues. It does not make sense to add additional closures to the mix and further add to the current closure problems.
Most importantly, however, there is a severe lack ofservices currently available in the community for the large majority of SDC residents. In my written testimony to the recent senate hearing committee on issues related to SDC, I touched on the issues surrounding the placement of behavioral residents outside the center as follows:
"FACT: Providers like to get developmental center clients in their homes because there are often additional funds available to provide for their care. They can only meet their needs, however, until the day they can't. These community homes have the right to expel clients who prove too challenging. My son was expelled from community placements both times he attempted to reside in a community home. His bed was filled behind him so it was impossible for him to return. Providers rely on the monthly income they receive for each client; so naturally, they will not hold an unfilled spot for very long. As PHA President, however, I have heard several similar stories of failed placements. Until recently, our loved ones have had the option to return to the secure environment at the centers. This is no longer true.
FACT: There are essentially only two models of community placements. One is a form of board and care home and the other is supported living. Neither is really adequately suited to the needs of the complex behavioral client. Both leave the few relatively untrained staff in charge of these challenging folks when they may be in desperate need of additional expertise to handle their behaviors. There is a need for a new model to accommodate these clients and to alleviate the potential for escalating behaviors, which have resulted in their expulsion.
FACT: When a placement fails, the regional centers have few options left for a behavioral client. The North bay Regional center, which serves my son, currently has four behavioral clients at College Hospital in Southern California at a cost of $460,000 per year. The truth is that the only option may be a general acute psych facility, or jail. clients can end up in jail through no-fault of their own, but due to behavioral problems that arise because of mental illness or stress. When their placement can't control these behaviors, the police are called. Oftentimes the police have no other option than to take a client to jail.
FACT: Neither jail nor a general acute psych facility is a safe option for a developmentally disabled client in crises. Both have similar risks. There are no familiar staff who understand their medical needs and behavioral issues. The psychiatrist in charge of medicating them doesn't know them, their history, their behavioral issues, or their unique medical sensitivities. The last time my son went to an acute psych facility he ended up in an intensive care unit due to this lack of knowledge and expertise. Jail staff is neither trained to work with behavior clients nor sympathetic to their issues. Oftentimes staff views them as less than fully human. Finally the other residents who are not developmentally disabled, but clearly have behavioral issues of their own, are free to manipulate and bully them at will. This occurs both in jails and acute psych settings.
FACT: The Department of Developmental Services does not appear to have the necessary data to track how many behavioral clients are in trouble. When I asked, via a public records request how many former SDC residents had gone to jail, acute psych facilities, or had been forced into alternative placements, they were not able to give me the information, It is difficult to solve a problem when we don't know its true extent. Instead DDS has chosen to place the problem on permanent hold. With the coming wave of individuals with autism who are now reaching young adulthood, this may well prove a dangerous and tragic course."
There are also issues with placement of the most medically fragile residents. the date on deaths following placement to provide facilities has been woefully inadequate, but certainly it has failed to assure that they will survive these moves.
Those who speak out to close the developmental centers have failed to address deficiencies in community services, which pose risks for outsource residents. Instead, they provide blanket statements that such placements will be done in "compliance with the Lanterman Act provisions - and full consultation with residents, their families, and staff." But, this is NOT what is happening. Families even now are being separated, contrary to the direction of the Lanterman Act, because there is no placement in Northern California adequate to care for our most difficult to serve. If adequate resources haven't been developed within the 40 years since the centers have started closing, what assurance do we have that things will change overnight? This proposal to close the centers without any consultation with center residents, staff or families is callous and demonstrates a complete disregard for the lives and well being of the residents in the centers. As families and loved ones of California's developmentally disabled, we must all support each other, with the best interests of all at heart, wherever these citizens may reside, recognizing, as those who created the lantern Act did, that one size does not fit all. Please help us assure the safety and welfare of our most vulnerable citizens, please stingily oppose this bill.
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Co-sponsor of closure bill
Assemblywoman Holly Mitchell
State Capitol RM 2163
Sacramento, CA 95814
Co-sponsor of closure bill
Senator Bill Monning
State Capitol RM 4066
Sacramento, CA 95814
Senator Noreen Evans
50 “D” Street 3120A
Santa Rosa, CA 95404
Assemblyman Marc Levine
3501 Civic Center Drive #412
San Rafael, CA 94903
Assemblywoman Mariko Yomada
725 Main St. #206
Woodland, CA 95695-3454
Recently the Parent Hospital Association circulated information about a proposal to close California's developmental centers that appeared in a recent ARC newsletter. PHA members were urged to contact their state representatives -- and particularly the reported sponsors of the legislation that would close the centers: Assemblymember Holly Mitchell and Senator Bill Monning.
