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.

Good News for Sonoma Developmental Center NF Residents

The PHA Board received the good news from SDC administration that the units with medically fragile residents will be adding back clinical nurses. Having clinical nurses on those units is important to offering the support for other staff in providing care for those challenging residents. Prior to recent budget cuts clinical nurses were a regular and critical piece of the team providing services to SDC’s medically fragile residents. It is great news that will now be added back on NF units.

A Life That Mattered

Guest Commentary
by Marty Omoto, director/organizer of the California Disability Community Action Network (CDCAN)
 
Marty will be speaking at the next PHA General Membership Meeting scheduled for 10 a.m., Saturday, May 12, 2012, in McDougall Hall on the Sonoma Developmental Center campus.
This commentary was originally written in 2007 and is reposted here with the kind permission of the author.

I remember an enchanting photo of a young 4 year old boy, on a swing pushed gently by his unseen father, the boy's face lit on one side by bright sunlight, his eyes squinting in an almost teasing way, legs dangling playfully, his head tilted trying to catch the attention of his mother taking the picture, with a magical smile captured on a golden day long past.

Under the photo were the stark words "the darkness never overcame him".

It seemed unbelievable that those words and that photo - so full of life and joy - had anything to do with each other. And yet it seemed appropriate on the boy's memorial card, celebrating his short life and marking his unexpected death 19 years later.


"The darkness never overcame him..."

A year ago on September 7, 2006, Aaron Dimmitt, son of Michael and Barbara passed away just weeks before his 23rd birthday. They were with him, along with his sister, when he died in the hospital - his parents holding and hugging him as his life slipped away.

He had down syndrome and many other developmental and physical disabilities, including disabilities that may have been linked to autism.

He was most of all a beloved son to his parents and brother.

While darkness never overcame him in his short life, it sometimes seemed darkness overwhelmed the family he left behind. For his father - at the time, the Assembly Budget Committee consultant on Medi-Cal, health and developmental services - and his mother and sister, it was getting through the darkness of unexpected loss and unimaginable sadness.

It is a feeling that links them to so many of us who have experienced the same feelings of loss. It also links them to so many others who have experienced feelings of despair and anguish that comes when people are faced with one barrier, one struggle or one fight too many.

This is the other side of public policymaking and advocacy where people are often alone and unconnected, feeling helpless and without hope. It is the other side - I referred to as "the other California" before, that matters as much as any press conference, or debate on the budget, or hearing on some bill or drafting some regulation or writing a letter to a legislator, or analyzing an issue or putting out a report.

Long waiting lists for community placement one ripple effect of center closures

photo credit: Sol S. on flickr.com

In Connecticut a developmentally disabled person interested in placement in a group home in the community could wait years for a spot. The waiting lists are that long. As one commentator has pointed out, the problem seems to be exacerbated by the closure of developmental centers and other facilities.

Originally appearing in The Harford Courant, the editorial below was recirculated in the most recent Weekly News Update from VOR. We're reposting it because it is also a looming concern here in California as we continue to lose the resources housed in our DCs.

(Read to the end of this posting to find more commentary by the same author on this important issue.)

from The Hartford Courant (Commentary), April 1, 2012

About the author: David Kassel of Harvard, Mass., is communications director of the SouthburyTraining School Home and School Association.

Stan and Kathy Peters of Killingworth are facing the daunting task of finding a residential placement for their grown daughter, Sarah, 28, who is intellectually disabled.

The Peters would like to retire to Florida. Sarah, who now lives at home, would like her independence. But there is a waiting list in Connecticut for placements in group homes, and the wait can be years.

We have a suggestion that we believe would be a win for everyone. Instead of closing the Southbury Training School, as we believe the Malloy administration is now moving at full speed to do, the facility should be opened for the first time in more than 25 years to new admissions.

Southbury would probably not be the right place for Sarah, who is clearly much higher functioning than the average resident there. But it would be right for many people who are ahead of her right now on the waiting list for group homes.

Reversing course and opening Southbury would shorten the time that Sarah and her family would have to spend waiting for a residential placement to open up. It would immediately make a large and well-run residential facility with cottages and a beautiful campus available to people throughout the state who have been waiting for such an opportunity. To that extent, it would help solve the waiting list problem in general in Connecticut.

Secondly, opening Southbury would help reduce the cost of care per resident, which has risen steadily because the center has been closed to new admissions since the mid 1980s. Because of the lack of new admissions, the fixed costs of operating the center have been spread over a steadily shrinking base of residents.

Unfortunately, the Malloy administration is heading in the opposite direction. It is turning its back on Southbury and its residents and families and is ignoring the vast effort and hundreds of millions of dollars that have gone into improving the facility in the past two decades, bringing it to world-class status.

Southbury today is closely integrated with its surrounding community, meets strict federal standards of care and remains the best setting available in the state for the long-term well-being of its residents, according to the vast majority of the families and guardians there.

The Department of Developmental Services, however, is using the 2010 Messier v. Southbury Training School federal court settlement as a basis for emptying the center of its remaining residents by transferring them into community group homes as quickly as possible. The Messier settlement, which was reached without the input or approval of the families and guardians at Southbury, is based on outdated presumptions about the care provided at this institution.

While administration officials will not admit publicly that they are moving to shut down Southbury, internal DDS documents, obtained under Freedom of Information Act requests, project the virtual closure of the facility in six to nine years. Meanwhile, as community residences are developed or found for each of the more than 400 remaining residents at Southbury, what does this mean for Sarah Peters and the hundreds of other people waiting with her for residential placements? It means adding more years to the already unacceptable waiting time they are currently being forced to endure.

Connecticut has a serious problem in providing services and places to live for people with intellectual disabilities. Now is the time to explore every avenue to solve that problem, to re-examine long-held presumptions, and to step outside of rigid ideologies. It is not the time for business-as-usual approaches that are opposed by the families and guardians at Southbury and that will only worsen conditions for Sarah Peters and her peers in the DDS system.

Related post by David Kassel:
Why we’re concerned about the Connecticut DDS waiting list

As we note in our op-ed article in The Hartford Courant, allowing new residents into STS would do something real to help solve the waiting list problem by making existing cottages on the campus available to people with severe and profound levels of disability in the state who are waiting for residential services.  This would in turn open up opportunities for community-based residential placements for higher functioning people such as Sarah Peters of Killingworth who is currently facing a wait that could be years for such an opportunity.

Why the apparent rush to close STS and potentially make the waiting list problem worse? We think part of the answer lies in an anti-institutional and anti-governmental ideology, promoted by organizations like the Arc of Connecticut.  This ideology has given rise to court battles here and in other states to close state developmental centers.  But as noted above, there may be more going on here.   In Connecticut, the Malloy administration is also talking about reducing state funding for all residential services for the intellectually disabled, both public and private.

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Read more on The STS blog,
or click here to download VOR's April 6, 2012 Weekly News Update.

Budget news from Sacramento

Photo: Seyllou/AFP/Getty Images in
One billion people disabled, first global report finds on guardian.co.uk

VHIconnect recently posted a couple of budget and funding updates of interest to the developmental disability community -- and it's not all bad news.

In one post, they've reported that California’s Department of Developmental Services (DDS) has released its plan, as requested by the Governor’s December budget proposal, to cut $200 million ($100 million from General Fund) in expenditures in 2012/2013 ($100 million as required by the activation of “trigger cuts”, due to a revenue shortfall). (from DDS Releases Plan for $100 Mil in Savings)

The good news here is that the $100 million cost reduction will be achieved, according to the DDS plan, without having to make additional cuts to programs or services but through higher than expected savings from various existing measures already in place, and through an increase in federal matching funds.

DDS held a number of stakeholder workgroup meetings to provide input on where and how the proposed cuts/savings could be implemented. Senate Bill 73 directed the Department of Developmental Services (DDS) to consider a variety of strategies including savings attributable to caseload and expenditure adjustments, unexpended savings in contract budgets, and other administrative savings to meet this target.

In a related news item, VHIconnect posted that the Legislative Analysts Office (LAO) has issued a report titled “An Overview of DDS Programs and Recent Funding and Caseload Trends” which offers a summary of General Fund allocations to DDS developmental center and community based services. The report states that DDS spending has remained relatively flat over the past three years, although the report does not include costs such as In Home Supported Services (IHSS). The report credits the reduction in expenditures to “adoption of various savings measures that have offset growth in costs due to caseload and utilization of services”. (from DDS Updates Legislature on 2010 CA Auditor Findings)

See the VHI website for more details -- or read the full twelve-page report, which can be found on the LAO website at www.lao.ca.gov.

Despite these indications that DDS is holding the line on cutbacks, the vulnerability of funding for and continuation of services to the developmentally disabled community does continue to be a concern as the budget crunch continues in California.

Earlier this year, The Arc of California posted a report issued by the KTLP (Keep the Lanterman Promise) group on the results of a survey to providers that shows funding of many programs and services for community-based folks is at risk. (see In Danger of Collapse) As developmental centers continue to be downsized and closed and the disabled are dispersed to community-based care systems, it is important to ensure that support is maintained.