ARC Newsletter Appears to Have Spread False Information

UPDATE (2/28/13):

Kathleen has received follow-up information from Assemblymember Mitchell's office clarifying information we posted earlier.

Ms. Orr let PHA know that while the assemblymember was contacted by ARC requesting that she author legislation, none of the normal processes that precede agreement to author and introduce legislation have occured. She went on to say that while she could not say what might happen regarding the proposal this year, or where Assemblymember Mitchell stands on the matter of California's developmental centers, their office has received a couple dozen letters in support of the centers and that they very much value the input. She also said that PHA "parents and family members are to be commended for taking swift action to defend an issue that is dear to them."

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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.

Today PHA received the following letter from Assemblymember Mitchell's office. PHA President Kathleen Miller also received word from Senator Monning that he also has not sponsored any such bill.

Hello,
I work with Assemblymember Holly Mitchell and I’m contacting you in regards to the letters and calls my office has been receiving from parents and relatives of clients of the Sonoma Developmental Center, asking Assemblymember Mitchell to not close the center. I believe there has been a huge misunderstanding or that someone is spreading false information, because Assemblymember Mitchell has not proposed legislation this year to close Sonoma or any of the developmental centers, nor has she even been formally asked to author such legislation. Please contact me at your earliest convenience to discuss this matter.

Thank you,

Mia Orr
Office of Assemblymember Holly Mitchell
State Capitol, Rm 2163
Sacramento, CA 95814
916-319-2054
916-319-2154 fax
mia.orr@asm.ca.gov

More details will follow as they become available, but it seems the ARC newsletter spread false information.

In Response to ARC Proposal to Close CA's Developmental Centers...

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 legislators
From: 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

Developmental Center Bills Approved by the Governor

Two bills affecting the way California runs its developmental centers were approved by the Governor days before the September 30th deadline. Both bills expedite a developmental center's report of any incident of resident harm or death and more clearly define the internal protection
agency's responsibilities.

California Senate Bill 1522, introduced by Senator Mark Leno, which proposed new reporting requirements for the State's developmental centers, was signed by Governor Brown on September 27th, along with SB 1051, a bill similarly designed to improve reporting procedures as well as set certain qualification requirements for the Director of Protective Services. 

(see SB 1522 (Leno) - search Chapter 666 in 2012)
(see SB 1051 (Emmerson and Liu) - search Chapter 660 in 2012)

SB 1522 and SB 1051 will also require developmental center employees to get further training on the reporting of abuse incidences. Both were introduced in the wake of specific problems at Sonoma Developmental Center.

VOR and the Parent Hospital Association of Sonoma Developmental Center’s Position in Support of California Senate Bill 1522

VOR is a national organization that advocates for high quality care and human rights of all people with intellectual and developmental disabilities (ID/DD). The Parent Hospital Association of Sonoma Developmental Center (PHA Sonoma) is a VOR affiliate. Together we support the right of individuals with ID/DD to choose from a full array of residential care.

We join together in our support for SB 1522, a bill calling for even more developmental center resident protections.

SB 1522, as amended, will require that developmental centers immediately  report -

“a death, a sexual assault, an assault with a deadly weapon by a nonresident of the developmental center, an assault with force likely to produce great bodily injury, an injury to the genitals when the cause of injury is undetermined, or a broken bone when the cause of the break is undetermined, to the local law enforcement agency having jurisdiction over the city or county in which the developmental center is located, regardless of whether the Office of Protective Services has investigated the facts and circumstances relating to the incident.”

California developmental centers are licensed Intermediate Care Facilities for Persons with Mental Retardation (ICFs/MR). A vast majority of developmental center residents have severe or profound intellectual disabilities, are multiply disabled and medically-fragile or experience dangerous behaviors.

Families and conservators of these individuals value the high-quality care received by their loved ones and take great comfort in the existing layers of state and federal oversight which ensure adequate treatment, humane and safe care. Families view SB 1522 as further assurance that consistently good care will be received, with any egregious actions against their well-being being reported, investigated and resolved with urgency.

July 26, 2012

Federal judge OKs DOJ settlement in Virginia disability services case

In a hearing this past Friday a federal judge said he would approve a $2 billion settlement between the Commonwealth of Virginia and the U.S. Justice Department designed to expand community-based services to people with intellectual and developmental disabilities.

But before Judge John A. Gibney enters the agreement into the court record, he wants a provision added that would give residents of state institutions the option to remain in a state-run facility.

Gibney's closing statement came after nearly five hours of testimony from experts and from relatives of people with disabilities living successfully in the community, as well as relatives of people who've resided much of their lives in large, state institutions or training centers.

...read the full report at Federal judge OKs DOJ settlement on newsleader.com.

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For more background on the case, see News from Virginia: Department of Justice defends Va. institutions settlement on this blog.

CAPT comes out in support of amending budget language

The California Association of Psychiatric Technicians (CAPT) issued a statement today in support of the Parent Hospital Association and our efforts to amend language in the trailer bill regarding state developmental centers. (See previous post, Concerns over proposed Trailer Bill language affecting DC clients and services, for more information on the legislation in question.)

According to the statement, CAPT believes "clients and families' voices should come first and foremost in any discussion regarding the professional services provided at our federally accredited developmental centers, or anywhere else. As such, proposed budget language as written raises numerous concerns for ourselves as nursing professionals and patient advocates, as well as for the families whose loved ones we serve at our developmental centers."

The group went on to list the following concerns with respect to the proposed changes for developmental centers:

• Further strengthening Department of Developmental Services' "deflection" practices away from Northern California developmental centers presents added costs for the state and hardships for clients and their families. Proposed budget language states that Fairview Developmental Center shall be the only developmental center authorized to admit a consumer in ate crisis, ignoring the professional crisis services available at other developmental centers. […]
• Continuing to severely limit admissions to Porterville developmental Center's state-of-the-art secure treatment facility leaves Californians with developmental disabilities locked in jails and prisons. The state's proposed language says that PDC cannot admit anyone in need to the Secure Treatment Facility unless the population is fewer than 230 persons total. […]
• Limiting admissions to "962 homes" further limits quality care options and choices for Californians with developmental disabilities. the proposed budget language limits the habilitation of "962 homes:" group homes specifically designed and staffed for individuals with developmental disabilities and related medical issues. […]

The group went on to say, "A recent court ruling out of Virginia should serve as a reminder for California in terms of residents and families' rights and choices on where they can live and receive services, not where federally financed attorneys and profiting agencies say they should. In that ruling, a federal judge has decided that families 'have a signifiant, protectable interest in receiving the appropriate care of their choice and protecting their rights' on behalf of their loved ones receiving developmental services."

(See News from Virginia: Department of Justice defends Va. institutions settlement on this blog.)

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You can download a full copy of the CAPT statement here. (pdf)

Concerns over proposed Trailer Bill language affecting DC clients and services

As part of an apparent effort to reduce costs to the State General Fund while shifting those costs to federal waivers, California's Department of Developmental Services (DDS) has Proposed Trailer Bill Language Titled 652 Consumers With Challenging Needs, which has raised real concern in the developmental disability community.

While placement outside a developmental center may be a good option for some when the family and care team endorse it, requiring someone to endure a life-altering (and in many cases, life-endangering) relocation in order to obtain increased federal matching funds seems unreasonable and a strategy lacking in compassion.

In summary, as we read the trailer bill, it would make the following changes:

• DC's are not to be considered as the placement of last resort. Technically, this Bill closes the remaining DC's in 5 years without calling it a closure.
• The moratorium on placements into DC's is absolute, even for those in crisis or under court order. They even refuse to accept more placements into Porterville, with a max of 230 residents in the secured facility. 
• Fairview can only serve crisis individuals for 6 months, then they have to move out, unless the DDS Director herself signs a waiver. 
• 962 homes & delayed egress facilities will be developed across the state, but still only restricted to DC movers. 
• Crisis beds and homes must be made available to any regional center in the state, so if there is an open bed in San Diego for someone from Sonoma, they will be moved.
• Regional centers must do assessments on ALL DC residents who they have not assessed in the last year. Of course the goal is to start a plan for transfer.

Fortunately, there are opportunities to make simple and reasonable adjustments and we've listed some specific concerns and proposed solutions below. If you would like to contact legislators to urge them to consider making changes to the trailer bill, we have also included contact details at the end of this post.

Specific concerns (and proposed solutions) regarding the proposed language include: 

1. The DDS places “a moratorium on new admissions to the developmental centers” (from the 8-page “Proposal to Achieve Savings” summary).

Concerns:

• The summary begins with a reference to “preserving the Lanterman Act entitlements” yet, via this moratorium, goes on to deny, for individuals in a crisis situation, the option of a developmental center placement. DC’s have acted as a ‘safety net’ for crisis situations ever since the community-based service system was developed, fifty years ago. Where will these individuals fall if their safety net is removed?
• The trailer bill proposes development of new crisis and ARFPSHN homes across the state, to serve individuals with “challenging service needs”. In the Agnews and Lanterman closures, these homes required nearly two years to develop, from purchase to move in. Why would the DDS propose a moratorium effective July 2012 if development of new homes has yet to begin and will take 2+ years?
• A moratorium on admissions lacks compassion for those individuals who live in areas where alternative options are not accessible or appropriate (such as incarceration within the correctional system).

Solution: Delay the implementation of a moratorium until after alternative resources and homes have been constructed.

2. Notwithstanding any other provision of law or regulation, effective July 1, 2012, Fairview Developmental Center shall be the only developmental center authorized to admit a consumer…”

Concerns:

• This mandate places families in northern California, who may need a crisis placement, in extreme hardship. Such a placement would prevent most families and friends from regularly visiting a loved-one placed at Fairview, especially when, during crisis situations, family and team support is critically important to the individual.

Proposed Solution: Make Sonoma Developmental Center available as a crisis resource for consumers living in northern California.

3. 4684.74 The State Department of Developmental Services shall only approve the development of Adult Residential Facilities for Persons with Special Healthcare Needs (ARFPSHN) that are directly associated with the community placement of developmental center residents.

Concerns:

• We applaud the DDS for creating additional ARFPSHN homes, a model that was first created for the transition of medically fragile residents out of Agnews. We simply ask why these excellent care options should be restricted to individuals being moved out of developmental centers? Many community individuals with challenging service needs would benefit from placement in an ARFPSHN home. 
• This limiting of placements to only DC movers created vacant beds at homes developed for Agnews’ movers, after the consumers living there died. Beds were empty for months while service coordinators searched for DC transfers, while local consumers could have benefitted immediately from placement.
• The success of the Agnews ARFPSHN homes was largely a result of knowledgeable, experienced staff that transitioned with the clients from the developmental center (over 120 state staff made this transition). Without the closure of a developmental center, the newly developed ARFPSHN proposed in this trailer bill will not have accessed to a pool of experienced state staff, which is necessary to ensure the well being of the consumers.

Proposed Solutions:

• Remove the reference in the trailer bill to ‘DC residents only’
• Add to the trailer bill a plan for a training program (possibly conducted at the DC) for new staff to be employed in the crisis and ARFPSHN homes.

4. 4418.25 b(2) Regional centers shall be required to provide DDS with information about all specialty resources developed with the use of Community Placement plan money and to make such resources available to other regional centers.

Concerns:

• During the closure of Agnews and Lanterman, one of the Department’s goals was to move individuals closer to their families. We applaud this goal and the resulting outcomes. The trailer bill language suggests individuals being moved out of DC’s (or those in crisis) would be placed at any regional center that had an available bed. There is no consideration for keeping the individuals, already confronted by a traumatic move, close to family and friends.

Proposed Solution:

• Add reference within the trailer bill to a seventy-five mile circumference for crisis placements.

5. 6000 (c ) Effective July 1, 2012 the DDS shall not admit any person to a developmental center pursuant to this section.
Concerns:

• Preventing admission to developmental centers for individuals under court order does not create alternative placements for these individuals. Where will they receive services, as promised by the Lanterman Act, after July 1, 2012?

Proposed Solution:

• Remove this reference from the trailer bill language, or at least define what alternative resource would be available to serve them.

6. 4418.25 c(2)Regional centers shall complete a comprehensive assessment of any consumer residing in a developmental center on July 1, 2012, who is not committed pursuant to 1370.1, has resided in a developmental center more than a year…

Concerns:

• Developmental centers conduct Individual Program Plans (IPP’s) for each consumer living there, on a yearly basis. The regional centers participate in these meetings, where comprehensive assessments are reviewed. Community placement is always considered as an option during these meetings, and regional center reps may suggest a potential placement, if they are aware of an appropriate and available option. Thus, this requirement seems to create a duplication of effort, as well as an undue burden on already overworked service coordinators.

Proposed Solution:

• Revise the language to read “regional centers shall review IPP’s and associated assessment of current DC residents…”

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LEGISLATIVE CONTACTS:
Senate Budget Subcommittee #3 on Health and Human Services

Mark Desaulnier(chair) Dist 7, Walnet Creek, Antioch, SF East Bay)
(Room 5035)
 Senator.Desaulnier@sen.ca.gov
916-651-4007 (ph); 916-327-2187 (f)

Chief of Staff: Krista Pfefferkorn, Krista.pfefferkorn@sen.ca.gov
Leg. Director: Rosanna Carvacho, rosanna.carvacho@sen.ca.gov
Exec. Assistant: Cruz Cole, cruz.cole@sen.ca.gov

Elaine Alquist District 13 (San Jose, Silicon Valley)
(Room 5080)
916-651-4013(ph); 916-324-0283 (f)
Senator.alquist@sen.ca.gov

Bill Emmerson District 37 (Riverside County, East LA, Palm Desert)
(Room 4082)
916-651-4037(ph); 916-327-2187(f)
Senator.emmerson@sen.ca.gov

Sub-committee #3 staffers    
Room 5019  
916-651-4103
Michelle Baass: michelle.baass@sen.ca.gov (health)
Jennifer Troia: Jennifer.troia@sen.ca.gov (social services)

Assembly Subcommittee #1 on Health and Human Services   (Room 6026)   916-319-2099
Committee Members
District
Office & Contact Information

Holly J. Mitchell - Chair
Dem-47
Contact Assembly Member Holly J. Mitchell
State Capitol, P.O. Box 942849, Sacramento, CA 94249-0047; (916) 319-2047

Wesley Chesbro
Dem-1
Contact Assembly Member Wesley Chesbro
State Capitol, P.O. Box 942849, Sacramento, CA 94249-0001; (916) 319-2001

Shannon L. Grove
Rep - 32
Contact Assembly Member Shannon L. GroveP.O. Box 942849, Room 3098, Sacramento, CA 94249-0032; (916) 319-2032

Allan R. Mansoor
Rep-68
Contact Assembly Member Allan R. MansoorState Capitol, Room 4177, Sacramento, CA 94249-0068; (916) 319-2068

William W. Monning
Dem-27
Contact Assembly Member William W. MonningState Capitol, P.O. Box 942849, Sacramento, CA 94249-002; (916) 319-2027

Bob Blumenfield - Dem. Alternate
Dem-40
Contact Assembly Member Bob BlumenfieldState Capitol, P.O. Box 942849, Sacramento, CA 94249-0040; (916) 319-2040

Jim Nielsen - Rep. Alternate
Rep-2
Contact Assembly Member Jim NielsonState Capitol Room #6031, Sacramento, CA 95814; (916) 319-2002

Health: Andrea Margolis, Andrea.Margolis@asm.ca.gov
Human Services: Nicole Vazquez, Nicole.Vazquez@asm.ca.gov

Residential-choice bill H.R. 2032 needs California support

The California Association of Psychiatric Technicians put out a call this week asking California constituents to contact their representatives in Washington and urge them to support the residential-choice bill House Resolution 2032, which is making its way through Congress.

H.R. 2032 is a federal bill that, if passed, will restore decision-making rights of developmental center residents and their families and guardians in certain federal-funded lawsuits aimed at closing developmental centers. H.R. 2032 must first pass out of the House Judiciary Committee before it can be passed by the full House. There is already strong support among Republican Committee members – Rep. Bob Goodlatte (R-VA) is sponsor and member of the Judiciary Committee. Rep. Barney Frank (D-MA) and Rep. Debbie Wasserman Schultz (D-FL) are also sponsors.

Action Needed: Calls to California Judiciary Committee Democrats

Five Democrats from California hold key spots on the House Judiciary Committee. Two of these Democrats are past cosponsors of similar legislation. The five Democrats are listed below with their D.C. phone numbers.

CAPT urged constituents to call by Friday, May 11 if possible with the following, or similar, message:  “I’m calling in support of H.R. 2032, a bill that is presently before the Judiciary Committee. I urge Rep. ________ to tell Judiciary Committee Chairman Lamar Smith that he/she will vote for H.R. 2032 and urge Judiciary Committee action as soon as possible. The Chairman needs to hear from Democrats who will support H.R. 2032. I ask that Rep. _____ help in this way. Thank you.”

You may be asked if you are from the representative's district and you should answer honestly, indicating your connections to people with developmental disabilities in California.
Below are the names of the Democrats that need to receive many calls.

DEMOCRATS FROM CALIFORNIA ON THE HOUSE JUDICIARY COMMITTEE

Central California (San Jose area)
Rep. Zoe Lofgren (D-16-CA) 202-225-3072

Southern California
Rep. Howard Berman (D-28-CA) 202-225-4695
Rep. Judy Chu (D-32-CA) 202-225-5464
Rep. Maxine Waters (D-35-CA) 202-225-2201
Rep. Linda Sanchez (D-39-CA) 202-225-6676

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California Association of Psychiatric Technicians: California calls urgently needed for residential-choice bill

Proposed bill would open unused developmental center property to lease

California State Senators Pavely and Rubio have introduced SB 1392, a bill that would create a new funding source for services to developmentally disabled people from the lease of unused or underutilized property on the grounds of the State's developmental centers.

Introduced in February, it has been making its way through the legislature and on Tuesday, April 24, 2012, came before the Senate Governmental Organization Committee for a hearing.

from a fact sheet on the bill:

"SB 1392 states that the Developmental Center property which has been dedicated to meeting the needs of people with disabilities for decades, would continue to be made available as a funding stream through lease, with the revenue generated deposited into the Californians with Developmental Disabilities Fund managed by the Department of Developmental Services. This fund would, upon the appropriation of the Legislature, be made available to continue to meet the needs for housing and other services for persons with developmental disabilities.

"SB 1392 does not propose the closure of any State Developmental Center. This bill simply preserves the economic value of the real property at any developmental center and gives the state an alternative option to liquidating the asset without addressing the unmet needs of former residents. If and when a Developmental Center closes, having the option to lease the property would generate a revenue stream that could then continue to serve persons with developmental disabilities."

You can download a 2-page fact sheet (pdf) on the proposed bill here:
FACT SHEET: SB 1392, (SENATORs PAVLEY AND RUBIO) - SUPPORTING PERSONS WITH DEVELOPMENTAL DISABILITIES; DEVELOPMENTAL DISABILITIES FUND

Download the text of the bill here:
SB 1392, amended

Or track the bill by visiting this link at aroundthecapitol.com and scroll down to find SB 1392.

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PHA President Kathleen Miller was unable to attend the hearing last week, however her daughter Molly Dillon prepared and submitted a statement. It is reprinted below.

Dear Ms. Carvajal,

My name is Molly Dillon and I am a member of Parents Hospital Association (PHA), a nonprofit, all volunteer group made up of family, friends and loved ones of those residing in Sonoma Developmental Center (SDC). My mother, Kathleen Miller, is the President of PHA. She is presently in the hospital recovering from knee surgery. So I write to you for both of us. I understand that Senator Pavley is sponsoring SB 1392 and that there will be a hearing tomorrow morning, April 24, 2012.  Please consider these comments on the proposed legislation, which would have been submitted sooner if PHA had earlier been made aware of the proposal. PHA continues to seek greater transparency and communication from the Department of Developmental Services and would like to be considered and involved when legislation is proposed that could have impact on residents at SDC. While I appreciate that this legislation doesn’t directly address the closure of the Centers, it still feels a bit like a hungry wolf waiting at the door.

PHA firmly believes that the developmental centers do continue to serve the needs of severely developmentally disabled state citizens, many of whom would perish without these unique and specialized services. Services which, at this time, are not available outside the Centers. As President of PHA, my mother has sought data from the Department of Developmental Services on the numbers of deaths of those who were moved out of Agnews when it closed. As of this date, she has been unable to get this information. This information is essential in the evaluation of whether the Agnews closure was in fact successful for its former residents. Without this data, it is premature to say that the Agnews closure was a success. Nonetheless, I understand that many would like to see all the Centers closed, regardless of what the actual data might suggest.

In the event of a proposed closure, I too have an interest in seeing the resources at the Centers preserved on behalf of the developmentally disabled, but contemplate the use of these facilities as more than simply a funding source for community vendors. I suggest that the legislation be amended to also create the ability for DDS to enter into public-private partnerships that would preserve the special capabilities, expertise and resources currently amassed at each of the Centers in order to be redirected to better serve the most severely developmentally disabled; Much like the recent move to preserve the unique and special resources at the State Parks.

Most who deal with the current dilemmas that face the provision of services to the developmentally disabled in the State would agree that the Centers house the most difficult to serve of this population, and also the most expensive, wherever they may reside. The Centers have also come to house a special wealth of resources; Doctors who specialize in caring for the unique physical and psychological issues of this segment of the population, social workers, nurses, psyche techs, and more who all have immense experience and knowledge. Regional Center experience has demonstrated that these resources are difficult, if not impossible, to develop and sustain outside of the Centers. This is particularly true in the northern part of the State, where the lack of population and cost of living converge.

If we are to look to the Centers as a source of wealth, let’s not limit our view to a nominal amount of rental income. Members of PHA have expressed an interest in proactively developing a mixed use facility on the grounds of SDC that would help support the wealth of specialized services for all developmentally disabled who might ever need them. And there will be need for this level of expertise. If we don’t take the opportunity to foster and sustain it while we can, someday it will be gone. This legislation should include the option for the Centers to be reconfigured in a way that would both enhance financial supports and preserve expertise and specialized services, including dental, psychiatric, and medical for all developmentally disabled who need them, as well as crises intervention and a residential component for those who would struggle to survive outside the Centers. Anything less would just condone a money grab among those in need within the DD system. We must be more collaborative and forward thinking in these difficult times.

Please make my comments part of the legislative record.  Thank you for your consideration.

Sincerely,
Molly Dillon

Bills would increase scrutiny of potential patient abuse cases at CA developmental centers

California Watch is reporting that State lawmakers have introduced two bills to increase the number of agencies alerted about injuries and alleged crimes against patients at California's developmental centers.

State law now requires developmental center officials to report patient deaths and serious unexplained injuries to law enforcement. But often, the centers’ in-house police force, the Office of Protective Services, is the only criminal justice agency involved in potential patient abuse cases.

Under SB 1051, the reports also would go to outside law enforcement and a patient advocacy organization, Disability Rights California. Sen. Carol Liu, D-Glendale, and Sen. Bill Emmerson, R-Riverside, are sponsoring the measure.

The companion legislation, SB 1522, goes further, mandating that city or county police agencies receive notice of cases of sexual assault, assault with a deadly weapon or force, and unexplained injuries involving broken bones or patients’ genitals. Sponsored by Sen. Mark Leno, D-San Francisco, the bill would require centers to alert outside law enforcement “regardless of whether the Office of Protective Services has investigated the facts and circumstances relating to the incident.”

You can read the full article at Bills aim to alert local police to developmental center injuries on the U-T San Diego website.

California Watch ran a series of articles in February (see: Broken Shield on the California Watch website) reporting failures to protect the state’s very vulnerable developmentally disabled residents. Hearings in Sacramento followed in March. Those hearing were chaired by Senator Carol Liu, a co-sponsor of SB 1051.

According to California Watch, the bills’ sponsors continue to seek supporters, including patient advocacy groups and the state Department of Developmental Services, which runs the developmental centers.

“The department is tracking and reviewing the bills, and the administration has no position at this time,” Nancy Lungren, the department’s spokeswoman, said in a written statement.

The impact on local law enforcement continues to be evaluated. As yet, there is no indication that the new requirements, if passed, would also apply to group and community homes run by the State's regional centers.

VOR calls for moratorium on deinstitutionalization lawsuits

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

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

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

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

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

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

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

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

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

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

Urge Washington to reform care for disabled

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

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

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

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

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

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

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

Healthcare coverage for autism mandated by new California bill

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

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

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

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

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

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

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

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

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

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

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

Furthermore (from the letter):

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

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

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

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

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

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

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

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

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

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

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-
* * *
(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.

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.

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.