PHA President Reacts to Task Force Recommendations

The last task force meeting took place on December 13th in Sacramento. Parent Hospital Association President Kathleen Miller addressed her reactions to the ideas being generated by the task force to Secretary Dooley. These remarks are supported by PHA members, family and friends of Sonoma Developmental Center residents, and members of the Sonoma Coalition to preserve services for SDC residents

Please add your own input by leaving your comment here on the blog – or you can share your comments on the PHA Facebook page at facebook.com/ParentHospital.

This post is an update of an article included in the most recent issue of The Eldridge Gazette. If you are on the mailing list, you will receive your copy soon -- or download a pdf copy by clicking The Eldridge Gazette, Nov/Dec 2013.

Idea 1: Establish a comprehensive medical resource center for the community
We heartily support this idea and the concept that a clinic be located on Sonoma Developmental Center land to serve center residents who move to alternative placements. We are also pleased that it can include supports for consumers living in other alternative community residential options, who have complex medical and behavioral needs as well as those individuals who are moving from developmental centers. We continue to support the idea that community services must: 1) include a range of options; 2) have access to stable funding; and 3) have available the necessary supports for individuals to live successfully outside  developmental centers.

We also support the concept that a medical clinic be developed and maintained on Sonoma Developmental Center land that provides needed services to maintain the medically fragile individuals and behavior residents who are forced to move to alternative placements prior to them being moved. Those who are early movers must not be excluded from access to medical services simply because they were the first to move. Sonoma Developmental Center physicians should be given the option to work in medical clinics that serve these populations.

Idea 2: Use State Developmental Center land to develop community services, including a medical resource center and mixed use communities similar to Harbor Village
While we support the existing “Mixed-Use” Communities, such as Harbor Village, we do not support the expansion of such communities for current developmental center residents. We oppose the development of a large “Mixed-Use” Community on the Sonoma Developmental Center campus. Our reasons are as follow:

1. The residents with behavioral issues who currently reside in Sonoma Developmental Center require residences that do not have common walls and many require residences with structural supports. Residents with behavioral issues also benefit from having ample space to take walks and de-escalate when it is necessary.  They require an accepting environment that is safe and allows them to be in charge of their behavior when they need to do so. They benefit from the calm, beautiful grounds and a few residents spend the large part of their day outside paying occasional visits to the farm, or store , or simply wandering the natural setting that is SDC. Also, some residents with these issues may require a residence that is locked for a time. However, if this is the case then provisions should be made to be able to transition to unlocked residences as they are able to handle them safely. It would be best if these moves can be accommodated while maintaining most of the elements of their environment. Some residents have changing needs in this regard and provisions will need to be developed that enable those individuals to be able to transition in place within their community from locked to unlocked residences  as needed. Such requirements place serious economic constraints on the type of housing that would meet their needs and calls into question whether they can benefit from the advantages of living in a “Mixed-Use” Community.
2. We do not support the idea that community living is only possible in the company of non-disabled individuals. There are many examples of intentional communities, such as retirement communities, university campuses, housing arrangements for people with autism or other disabilities and developmental centers.” Community” is more than “Mixed-Use “housing which under current regulations means three nondisabled residences per disabled residence. ”Community” includes shared open space where people go to play, work, shop, eat, and celebrate life events together. Intentional communities for those with varied disabilities are often the first choice of consumers.  Two such intentional community housing options currently exist in the Sonoma/Napa Counties in addition to SDC and both have wait lists.
3. Local communities may want to decide how much and what types of development occurs in their neighborhood. Restrictions may currently exist on DC land. Economic realities must be included in the decision of whether a “Mixed-Use” community may be the best use for DC land. There may well be other locations that would better fit such a “Mixed-Use” living project other than developmental center campuses. Much of those considerations lie beyond the scope of this task force.
4. We also feel it is important to point out that whatever else is on the DC land it will need to contain a crises program, a transition facility, a state facility for those whose needs are best met in state housing, and a medical clinic. We fully support the use of DC land for these uses first and foremost and these uses may not blend necessarily with a high density “Mixed-Use” Community.
5. We support a public/private partnership to create half-way ICF homes for behavioral residents who may reside for a time in the state zero reject facility. These homes can create a bridge to help residents transition into community housing or may need to provide a more long term residence for those who present a higher risk to both themselves or to the community. These homes can coexist with a state zero reject facility on Sonoma Developmental Center land.

Idea 3: Serving Individuals with Enduring and Complex Medical Needs

We support the examination and use of mortality studies and mortality data and their recommendations before the forced relocation of medically fragile developmental center residents.

While we understand that there are models of care in the community that provide services to consumers with significant medical needs, we do not agree that they negate the need for state operated facilities. Until death data confirming that these services, and the transitions to them, do not cause the decline and unintended deaths of medically fragile DC clients, they should not be forced into other living options. Currently we do not have access to this data.

Following the closure of Agnews Developmental Center, there were studies to look at the success of the closure and subsequent moves. While there were studies commissioned by DDS at considerable expense, they neglected to provide data on the one issue of concern to our families of medically fragile DC residents -- the rate of deaths during the closure years in comparison to death rates prior to the closure process. When we attempted to obtain these data, we were given data that appeared to be inconsistent and incomplete. Attempts to get information on the rate of deaths during the current closure of Lanterman Developmental Center have yielded more inaccurate data or have been ignored.

Before we eliminate the safety net of the Developmental Centers for those with enduring and complex medical needs, we request that there be data collected on death rates. In the event that there is an increase in the rate of deaths during closures; we feel that needs to be addressed prior to any plan to move the remaining medically fragile individuals out. It is only reasonable that the DDS and anyone concerned about the safety and well being of these individuals would do this.

We also feel strongly that the clinic concept needs to be in place and ready to provide necessary medical support services before any medically fragile individuals transition to alternative homes. It is vital that they have access to enhanced medical services to maintain them in alternative settings.

Idea 4: Serving Individuals with Criminal Justice System Involvement
We support the state continuing to operate a secure treatment facility for those involved with the criminal justice system. We also support the continuation of Canyon Springs as a “step down” program for those leaving Porterville Developmental Center.

Idea 5: Individuals with Challenging Behaviors
We support state services for individuals with challenging behaviors including crises, stabilization and assessment, and residential services. Our reasons are as follows:

1. Members of the Task Force understand and have stated that no model exists outside of the state facilities that can safely provide for some consumers with challenging behaviors.  Closer examination of alternative housing reveals that what is best about an alternative housing model are the provision of enhanced staffing and access to behavior services. These models already exist in specialized housing arrangements with enhanced funding. These provisions have worked for some individuals, but have not worked for others who need even more services and supports. Adding increased restrictions on individual freedoms such as behavioral restraints and locking the homes, is not the answer. Without the intense oversight provided by layers of staffing and the many licensing requirements at the developmental centers there are too many opportunities for these restrictions to be misused. Locking the perimeter and/ or the building and mixing residents with different behavioral challenges, is very likely to lead to a dangerous situation. There is risk that such alternatives will not be safe much less therapeutic. The use of restrictive interventions should be used only with a high level of oversight.
2. Developmental centers already have a process in place to ensure that consumers who are stable and ready to re-enter the community by selecting an appropriate living option, are able to do so. In fact, recent trailer bill language mandates that every single resident have a complete assessment to determine if they are able to make a move to the community. Any resident who expresses a desire to leave has immediate access to assistance from a Client Rights Advocate to assist them in realizing that wish.  Without a mass forced relocation of the last remaining developmental centers of the challenging behavior residents, the DCs will continue to become smaller and leaner.  What is needed now is not closure but restructuring to develop a state system to more cost-effectively serve this limited population
3. Forcing those with intense behavioral challenges out of the developmental centers places them at unnecessary risk. We know from experience that this is a group of people that often suffer from all types of abuse, over or under medication, untoward police involvement, frequent evictions, a limited range of activities and other personal risks. For some people, the developmental centers have provided the only stable home they have ever known. We celebrate the stories of those who have gone to alternative homes and have been successful. Unfortunately, all too often, we families and friends are the only ones available when the community placement falls apart and the individual and the public are at risk. Too many families of behavior consumers have seen loved ones bounced from place to place due to the lack of necessary supports. Today, it is necessary to continue to have state residences to rely on so this will not happen. 

What services should be included at Sonoma Developmental Center

1. Crises services are lacking in for many regional center clients. They can end up in emergency rooms, acute psychiatric centers created for the general population, and even jails. We believe a crises center that can be accessed quickly for those who need it could be a service that should be located on Sonoma Developmental Center grounds and staffed by experienced and qualified state staff.
2. A zero reject state facility, recommended by the task force, should be included in the services provided on the Sonoma Developmental Center site. There are current SDC residents who need to remain there for their safety and well being and this service needs to also be made available to behavior consumers who have been ejected from alternative residences.
3. Sonoma Developmental Center land is an ideal location for a medical clinic recommended by the task force to provide much needed medical services to medically fragile and behavioral former SDC residents who have been required to move to alternative placements. Medical services need to also include dental, durable equipment maintenance, and mental health services for these vulnerable former SDC residents.
4. Sonoma Developmental Center land is an ideal location for public/private partnership ICF homes. Some of these homes can serve as half way homes for behavior residents who are transitioning from the state facility to alternative homes outside Sonoma grounds. Additionally there could be ICF medical homes developed that serve the most medically fragile who would be at risk in other alternative placements. These ICF medical homes would be located near to the clinic to further insure that medical services are available as needed.

Task Force Recommends Changes for California's Developmental Centers

The Future of Developmental Centers Task Force wrapped up its work in Sacramento yesterday recommending major changes at California's remaining developmental centers.

According to a report in Friday's Santa Rosa Press Democrat, "The state’s four remaining developmental centers, which collectively serve 1,383 residents, would no longer operate as around-the-clock care facilities under the recommendations. Instead, the state would focus its attention and resources on smaller, crisis-intervention facilities, with longer-term care provided in partnership with regional centers and other community-based programs

"The Sonoma Developmental Center, which provides housing and medical care for nearly 500 severely disabled clients and is Sonoma Valley’s largest employer, would be downsized dramatically under a state task force’s recommendations unveiled Friday in Sacramento."

You can read the entire PD report here: Major Changes Eyed for Sonoma Developmental Center (The Press Democrat, 12/13/2013).

Read the next Gazette for more information on ideas put forth by the Task Force -- and stayed tuned to the PHA blog, website and Facebook page in the new year for the latest developments.

What are your thoughts? PHA would love to hear what you think about how the essential services to California's developmentally disabled citizens can best be provided. Leave your comments here -- or write to Parent Hospital Association at P.O. Box 237, Eldridge, CA 95431

Final Task Force Meeting Scheduled for Dec. 13

The final meeting of the Future of Developmental Centers Task Force will be held on Friday, December 13, 2013, from 9:00 a.m. – 4:00 p.m. in Sacramento. The location for this session is the California Department of Health Care Services, 1700 K St., First Floor Conference Room. The meeting program will begin at approximately 9:30 a.m.

If you can not travel to Sacramento -- and because seating is limited -- access to the meeting is provided on a toll-free, land-line conference call. Call-in information will be available on the Task Force website (see below) closer to the meeting date. The meeting agenda will be posted on the same web page the morning of the meeting.

If you have questions, contact Jim Suennen at jim.suennen@chhs.ca.gov. More information about the Task Force, including audio recordings of past meetings, is also available on the Health and Human Services website at www.chhs.ca.gov/Pages/DCsTaskForce.aspx.

What: Future of Developmental Centers Task Force - Final Meeting
When: Friday, December 13, 2013
Time: 9:00 a.m. to 4:00 p.m.
Where: California Department of Health Care Services
1700 K Street
First Floor Conference Room
Sacramento, CA

Coalition of Organizations Urges Support for Sonoma Developmental Center

Several organizations have joined together over possible changes in store for Sonoma Developmental Center (SDC) and the land the Center has occupied for over 120 years. The Parent Hospital Association (PHA), together with First District Supervisor Susan Gorin and key land use and environmental groups, are working to safeguard the unique and valuable resources represented at SDC.

The agenda of the next PHA general membership meeting includes a presentation by the Coalition, and everyone interested in the future of SDC, it's residents, the valuable services it provides to the disabled and its irreplaceable open space is encouraged to attend. The meeting will be held from 10 a.m. to noon, Saturday, January 11, 2014, in McDougall Hall on the SDC campus (map).

Below is a portion of the information being circulated by the group. You can access a copy of the complete two-page flyer by clicking SDC Coalition Flyer (pdf file).

Holiday Craft Fair Dec. 4-5 at Sonoma Developmental Center

The Sonoma Developmental Center (SDC) will hold its annual Holiday Craft Fair Wednesday and Thursday of this week -- Dec. 4th and 5th -- from 10 a.m. to 4 p.m., in the gymnasium on the SDC campus.

The Craft Fair raises funds for client activities that are not funded by the state. Items available for purchase include knitted hats, pottery, beauty products, ornaments, handmade jewelry, children’s books, handmade toys, candles, ceramics, one-of-a-kind gifts, and much more. With 20-plus vendors from Sonoma County each day, it's a great place to do some holiday shopping while supporting the Center.

Entrance to the Craft Fair is free and the event is open to the public. For directions to the gymnasium, located on the corner of Wilson and Sonoma roads in Eldridge, go to www.dds.ca.gov/Sonoma/Directions.cfm.

For more information about the Holiday Craft Fair, you can contact Coordinator of Volunteer Services Becky Zyskowski at 938-6713.

Disability News Updates from Vast Horizons

Vast Horizons, Inc. are an advocate organization for people with special needs, including developmental disabilities and autism, and they have just released their latest -- and updated -- newsletter. Below are their top news items. You can click on the link at the bottom of the post to read more.

US REP. DUCKWORTH FIGHTS 'GAMING' OF DISABILITY BENEFITS
Rep.Tammy Duckworth plans to co-sponsor a bill to tighten the rules on who can receive veterans disability benefits and contract set-asides, after the revelation that a federal contractor was collecting excessive payments for...

GOVERNMENT EASING THE WAY FOR DISABLED AIR PASSENGERS
Federal regulators say they’re issuing new rules aimed at making flying easier for passengers with disabilities. A rule issued Monday by the Dept. of Transportation requires airlines to make pages of their websites accessible...

OFFICIAL FIRED AFTER CRITICIZING AFFORDABLE CARE ACT CHANGES
William White was fired from his job as D.C.'s insurance commissioner one day after he questioned the president's proposed healthcare fix. White told NBC News that on Thursday he released a statement reacting to the president's...

DEAF FOOTBALL PLAYER FORGES ON, WITH TEAM SUPPORT
A hearing impaired high school football player masters the game through courage, with the help of the coaches, teammates, and his ASL assistant, who even attends daily practice with him.

WHY 'AUTISM SPEAKS' DOESN'T SPEAK FOR ME
A social media firestorm erupts after the only Board member of the nonprofit Autism Speaks who is on the spectrum resigns over the organizations latest call to action...

To READ MORE on any of these articles, or to find out more about Vast Horizons, Inc., go to the VHIconnect.org website.

Changes and progress at SDC: Message from Executive Director Karen Faria

The following was written by Sonoma Developmental Center (SDC) Executive Director Karen Faria in the latest issue of the Eldridge Press. You can read or download the entire November issue here: Eldridge Press, 11/2013.

Message from the Executive Director

On October 30th the Quarterly Governing Body Meeting occurred. Information was shared from July 2013 to September 2013. The minutes from the Governing Body meeting are available for viewing on the Intranet. I thought I would take this opportunity to share what I reported:

• The roll out plan for the Physical Nutritional Support (PNS) for this facility will be to identify high-risk individuals, have Interdisciplinary Teams review the risks and develop PNS plans per the current PNS guidelines. The state-wide PNS Policy is still in draft form and will be implemented fully at SDC when a completed policy is available.
  
• Much planning was conducted in the last quarter, but specific consolidation moves did not occur. All moves involved the relocation and return of the people who had lived in nursing residences (NF), to accommodate the installation of the new federally-required sprinkler system. Planning was conducted to determine the best moves of client service areas to make them closer to the individuals’ residences.
  
• The essential activities in the last quarter were to re-establish policies, committees and procedures that had lost their effectiveness or operational outcomes.
  
• Another major activity during the quarter was the hiring of staff into all classifications and to attempt a reduction in the amount of Mandatory Overtime use.
  
• We needed to provide sufficient information and cooperation with the Delmarva Foundation so that they could conduct their data collection for their Root Cause Analysis which was approved on 9/3/13 by California Department of Public Health.
  
• Summaries were discussed of what remains to be done in order to be fully compliant with the combined Conditions of Participation for General Acute, Nursing and Intermediate Care Facilities. (See page 2 for details)
  
• Almost all of the clinical areas have current Individual Development Plans (IDP—for staff); Program 4 and 6 are completed and NF is just about complete. Administrative Services will work on their IDPs next.
  
• Clinical Nurses are now on all ICF residences and individual health needs are just starting to be more thoroughly and timely addressed.
  
• Email accounts have been given to all of the NOC shift employees. Plans were put into place for getting drop lines and computers in the conference rooms for better recording of meetings. The older servers have been removed and data was sent to the less old servers.
  
• The return of the Administrative Services Director has improved the budget monitoring process and hiring of administrative staff just started to occur at the end of the quarter.
  
• Quality Assurance (QA) Plan and Indicators are completely developed and data is being collected. A consolidated facility-wide QA committee has been initiated and is reviewing all the data.

Open Letter to Secretary Dooley: On the possible closure of Sonoma Developmental Center

Dear Secretary Dooley,

I am writing you regarding the current status of Sonoma Developmental Center (SDC) and it's possible closure. I am both a staff physician at SDC and a citizen with a brother who is living in the community with intelectual disabilities (ID) . As such I feel I have a unique perspective on the effects facility closure would have on our clients with ID.

I have significant concern regarding the possiblity of closing SDC. Currently we have a unique and highly dedicated staff of nurses, physicians and consultants with expertice in disability medicine that I do not believe can be matched in the community setting. Closure of the facility would have a dramatic negative impact on the well being and medical management of our clients, in my opinion. My collegues and I all have anectodal experience of poor outcomes, and in my case at least one death, due to transfer of clients into the community setting. Unfortunately, despite our efforts to obtain objective data of follow-up and outcomes of our clients following communty placement, we have been unable to obtain such data. While anecdotal evidence should not determine policy, the medical staff here is unanimous in our assessment that closure of this facility could be extremely burdensome if not catastrophic for our most challenging and sickly clients, especially the elderly residing most of their lives here.

As a brother of a person with ID I can not tell you the frustration and challenge I have had obtaining proper medical care for him in the community setting, with regards to his epilepsy and mental health needs . While his doctors are compassionate and well intentioned, it has become obvious to me, especially since working at SDC, that their expertice in managing his special medical needs are lacking. I have had, on numerous occasions, had to prescribe urgent or emergency medical management to him due to lack of availability or knowledge base of his physicians. My recurrent  thoughts in such incidents are: "we are both extremely fortunate I have this unique medical training." and " what do others who have no such training do for their family or loved one with such disabilities in these settings?"

Rather than closing such a valuable institution I believe we would all be best served by strengthening it to both maintain residence for those most challenged individuals, and even expanding its services. As an outpatient referral center for those already residing in the community who require specialty care in neurology, psychiatry, physical medicine, geriatrics and palliative medicine, our facility, physicians and consultants would be uniquely trained to offer state-of-the-art, cost-effective medical care to this underserved demographic of our citizenry.

As I physician practicing disability medicine for some of our most challenged citizens, and as a brother of one such citizen struggling to maintain his health in the community, I urge you to strongly consider the negative effects of SDC closure on these vulnerable individuals.

Sincerely,

Gerald Camarata, MD

Mark Your Calendars Now for 2014 PHA Events

Before the end-of-year festivities and busyness overtake you, take a moment to mark your calendars for these important dates. 2014 will be here before we know it!

January 11, 2014 -- PHA General Meeting, 10 a.m., in McDougall Hall at SDC

We will have a presentation on the Sonoma Coalition. Sonoma Developmental Center (SDC) has long had the support of the surrounding community. Community members have concerns over the future of the site as well as supporting the maintaining of services for developmental center residents. Learn how banding together can help us achieve our goals of supporting services and protecting the environment for future generations.

March 8, 2014 -- PHA Annual Legislative Meeting, 10 a.m., in McDougall Hall at SDC

This year many of our legislative representatives will term out. Assemblywoman Yamada, Senator Evans and others are leaving and we need to hear from those seeking to replace them in their key roles as legislators who oversee Sonoma Developmental Center (SDC). Your attendance is important and it will give you the opportunity to learn who might support us in creating a path forward for our family members who reside at Sonoma.

March 29, 2014 -- Annual Event at the Vintners Inn in Santa Rosa

Our annual event is a wonderful opportunity to get together with others connected with Sonoma Developmental Center, enjoy a delicious meal, and lend support to the Parent Hospital Association's ongoing work representing the interests of the residents at Sonoma Developmental Centers and other developmentally disabled people in Northern California. Please join us in March and support PHA at our annual event -- we'll be at the Vintners Inn again this year.

Parent Hospital Association (PHA) meetings are held in McDougall Hall on the
Sonoma Developmental Center (SDC) campus in Eldridge, CA. McDougall Hall
is the blue building pictured here at the corner of Sonoma and Wilson.

Progress Report on Task Force Reviewing the Future of California's Developmental Centers

The Future of Developmental Centers Task Force met for the third time on October 22nd and, while it won't reach any conclusions by its targeted November deadline, it will finish its task by the end of this year. The fourth and final scheduled meeting will be sometime in mid-December; check the California Health and Human Services website for the latest updates.

Meanwhile, the Sonoma Index-Tribune has published an article on the progress of the task force thus far. PHA President Kathleen Miller, who serves on the task force, was interviewed and gives her summary:

"Miller said the conclusions that can be reasonably drawn from the discussions held on a monthly basis since July are that, on the one hand, SDC won’t be sold by the state to private developers but that, on the other hand, its mission and resident population will likely change. What that change will be isn’t yet clear, Miller said, but it is not likely to happen quickly."

read the full article at Future of Sonoma Developmental Center under review, by David Bolling, Sonoma I-T (11/06/2013)

New Edition of The Eldridge Gazette is Available

The next general meeting of Parent Hospital Association (PHA) members and friends is coming up 10 a.m. to noon, Saturday, November 9th, in McDougall Hall at SDC. The agenda includes a panel discussion on community services and also discuss the new assessments that have been mandated for all developmental center residents.

The minutes of the last meeting are included in the September/October edition of the PHA newsletter, which is just hot off the press. If you haven't received your copy by snail mail or e-mail, you can download a copy from the website. Visit parenthospitalassociation.org/resources -- you'll also find links to all other back issues available.

We hope to see as many people as can make it next week. For everyone unable to attend -- there will be a full report in the November edition of the Gazette, so stay tuned!

McDougall Hall is the blue building at the corner of Wilson and Sonoma.

Mark Your Calendars for these Upcoming Events

Task Force Meeting in Sacramento
The next meeting of the special State task force considering the future of California's remaining developmental centers will occur on Tuesday, October 22, 2013, in Sacramento. Please take note of the change of venue if you are planning to attend and testify -- the meeting on the 22nd will be held at the Department of Health Care Services located at 1700 K St, Sacramento. It will be located on the 1st floor in the conference room.

Parent Hospital Association (PHA) General Meeting
The next PHA meeting is set for Saturday, November 9th, 2013 from 10 a.m. to noon, in McDougall Hall on the Sonoma Developmental Center campus. We will have a panel discussion on community services and also discuss the new assessments that have been mandated for all developmental center residents.

Please note that the names and contact information for the 2013-2014 PHA Board is available on the website at parenthospitalassosciation.org.

Sweetwater Spectrum, Housing for Autistic Adults in Sonoma, Profiled

Sweetwater Spectrum in Sonoma
Winni Wintermeyer/NY Times

The New York Times today published a profile of the Sweetwater Spectrum community that opened earlier this year in the City of Sonoma. Designed to provide housing for a group of autistic adults, its founding families and board members hope to make Sweetwater a model for like-minded communities across the country.

see: The Architecture of Autism

The innovative concept and design of the complex is meant to provide both a safe and stimulating environment for independent living for the residents. While the $10.4 million price tag for the project puts it out of reach as a private venture for many families, it is interesting that key components of the Sweetwater program (farm and garden activities, animals, and exercise facilities) have also always been important at Sonoma Developmental Center (SDC).

Sweetwater Sprectrum resident collects eggs / Winni Wintermeyer-NYTimes

Care attendant helps Sweetwater resident record the harvest / Winni Wintermeyer-NYTimes

Governor Signs Bills Impacting People with Developmental Disabilities

The following information comes from the latest CDCAN Disability Rights Report, which is circulated by the California Disability Community Action Network. Reporting is Marty Omoto of CDCAN; PHA is recirculating this information simply as a service to its members. You can also subscribe and receive regular updates on happenings in Sacramento affecting the disabled, or follow Marty Omoto on twitter @martyomoto.

• SELF DETERMINATION BILL
• BILL IMPOSING NATIVE LANGUAGE REQUIREMENT FOR REGIONAL CENTER
• AUTISM HEALTH INSURANCE MANDATE
• EMPLOYMENT FIRST POLICY
  
  

SELF DETERMINATION BILL SIGNED BY GOVERNOR BROWN

Governor Brown’s approval of SB 468 by Sen. Bill Emmerson (Republican – Redlands) was hailed by many disability rights advocates, including families in developmental centers and in community-based services as a “landmark” and “historic” step in advancing the rights of people with developmental disabilities across the State.

Emmerson said that the statewide Self Determination Program will build upon the successful Self-Determination Pilot Project the Legislature passed in 1998 that only applied to five of the 21 regional centers and was capped at 200 participants.

SB 468 will open up the Self-Determination Program to all persons with developmental disabilities eligible for regional center funded services throughout the State, but will be phased in over three years and serve up to 2,500 consumers.

After the initial phase in period, the program will be available on a voluntary basis.

Sen. Emmerson, in a statement released after the Governor signed his bill, said self determination “…is a giant leap forward for consumers in the regional center system.  Individuals with developmental disabilities will be able to take charge of their future by choosing services that are most effective rather than relying on services chosen by the regional centers.”

Emmerson said the bill will also eliminate “…needless bureaucracy as the participants and their parents will have control over the services, supports and resources that are available, which is the original intent of the Lanterman Act.”  

The bill was co-sponsored by Disability Rights California and Autism Society of Los Angeles.

Connie Lapin of the Autism Society of Los Angeles and a family member and long time advocate who pushed hard for the bill said that the enactment of SB 486 will mean that California is “…the only state in the country that has achieved this in legislation  - not just in regulations and administratively [as done in some other states]”.

Lapin said that self determination under SB 486 means “freedom, choice and flexibility for consumers and families,” and offered her thanks to Governor Brown and his Administration, Senators Emmerson, Jim Beall Jr (Democrat – San Jose), Holly Mitchell (Democrat – Los Angeles), Assemblymember Wes Chesbro (Democrat – Arcata) and former Assemblymember Bob Blumefield (Democrat – Van Nuys) for realizing the dream for thousands of people and families across the State who can look forward to “an amazing journey.”

“SB 468 is the most important law to have passed in decades for individuals with developmental disabilities like my son, who is now 45 years old. These individuals want choice and control over their lives. This law makes that possible” said Dr. Harvey A. Lapin, member of Autism Society of Los Angeles and a longtime disability rights advocate.

Some advocates for some of the regional centers, while supportive of the self determination concept expressed concerns about the State’s commitment in providing sufficient resources and funding for the program as it expands and opens up to more people across the State.

BILL IMPOSING NATIVE LANGUAGE REQUIREMENT FOR REGIONAL CENTER INDIVIDUAL PROGRAM PLANS AND FAMILY PLANS

Governor Brown also signed SB 555 by Sen. Lou Correa (Democrat – Santa Ana) that would require the 21 regional centers to provide communications related to a person with developmental disabilities (and their families) Individual Program Plan (IPP) or Individualized Family Service Plan (IFSP).

Correa previously said his bill was needed because for people with developmental disabilities, “…health disparities can result in significant health, social, and economic consequences,” and that “…California's diverse language and ethnic communities account for about  60% of its population and that ethnic disparities exist within the regional center system.”

Correa contended that people with developmental disabilities receiving services from regional centers – and their family members who are limited English proficient  “…have the right to get culturally and linguistically competent information about the Individual Program Plan (IPP) and the Individual Family Services Plan (IFSP) processes and procedures,” adding that “…health literacy is essential to promoting quality of life, health development, and healthy behaviors across all groups and life stages."

SB 555 is one of three bills that focused on the issue of cultural competency and linguistics related to regional center funded services (AB 1232, SB 367, and SB 555).

AUTISM HEALTH INSURANCE MANDATE EXTENDED

In another major bill impacting people with developmental disabilities, Governor Brown also today signed SB 126 by Senate President Pro Tem Darrell Steinberg (Democrat – Sacramento) that will extend by another two and half years what is known as the “California Autism Health Insurance Mandate”.

The state law reportedly has already helped more than 12,500 Californians receive insurance coverage for early autism treatment under SB 946 – also authored by Steinberg - that was signed into law by Governor Brown on October 9, 2011 but was set to expire July 1, 2014.

SB 126 extends, until January 1, 2017, the provisions of SB 946 requiring private health care insurance plans to provide coverage for “behavioral health treatment” of children with autism and pervasive developmental disorders.

Steinberg, widely respected by advocates for families with children with autism spectrum and related disorders, said in a statement issued following the signing of SB 126 that “earlier this year, I stood on the Capitol steps and called for an extension to help tens of thousands more receive autism behavioral health treatments. Today, that hope for more effective therapy is a reality for those who desperately need it. I’m proud that California is leading the nation on ensuring treatments for those with autism.”

SB 126 also provides for the evaluation of recommendations by the Department of Managed Health Care Autism Taskforce, a process for licensure for providers and paraprofessionals of behavioral health treatments, coordination with “Obamacare” – officially known as the “Affordable Care Act of 2010”, and assessment of future guidelines of that federal law.

Autism is the nation’s most rapidly growing serious developmental disability, as the number of those living with autism in the United States is 300% higher than it was in 2005. Nearly one in every 50 children in U.S. children exhibits signs of autism spectrum disorders.

Research demonstrated that early behavioral intervention therapies improve brain functions, promote higher cognitive functions and reduce self-injurious behaviors for a significant number of individuals with autism spectrum and related disorders

Since the autism insurance mandate initially went into effect on July 1, 2012, the California Department of Insurance estimates annual taxpayer savings of up to $200 million in intervention costs from regional centers and special education programs. The bill was sponsored by Autism Speaks.

GOVERNOR SIGNS “EMPLOYMENT FIRST POLICY” FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES

Governor Brown also signed this afternoon AB 1041 by Assemblymember Wes Chesbro (Democrat – Arcata) that will establish a statewide “Employment First” policy for persons with developmental disabilities eligible for regional center funded services.

Assemblymember Chesbro, considered by many advocates and policymakers as a leader in the Legislature for disability rights, said his bill was needed because the State “…has failed to adequately support people with developmental disabilities to achieve one of the central elements of leading a normal, productive life-employment,” adding that his bill “…seeks to re-orient the provision of developmental services by making employment opportunities the priority of the state."

The action by the Governor was applauded by many advocates and families across the State, though some advocates have argued that the State needs to do more in funding employment related services for people with developmental disabilities after years of budget reductions.

Secure Perimeters -- Is This the Sad Future for Folks with Behaviors and Dual Diagnosis?

DDS has written new regulations to create 15 bed “homes” with delayed egress and secure perimeters. These facilities are clearly more restrictive in fact, but not in law, than developmental centers. Residents can be held in these locked facilities for indeterminate lengths of time. The staff receive 16 hours of training and are good to go for some of the most mentally ill and behaviorally challenging consumers.

Is this what DDS has in mind for Sonoma residents who do not make it in traditional community settings? Do not take my word for it -- read the new regulations for yourself. Then write your legislator and ask that they not be passed as written.

Kathleen Miller, PHA President

links to documents:
Initial Statement of Reasons
Notice of Proposed Rulemaking
Text of Proposed Regulation

Immediate Action Needed in Support of Residential Choice for the Devlopmentally Disabled

On October 7 and 8, 2013, the federally-funded National Council on Disability (NCD) could vote on a policy in support of deinstitutionalization. VOR is urging as many people who can to write NCD in support of maintaining a range of options in residential care for the disabled.

More information and all the necessary contact details are available on the VOR website at the link below:
Tell the National Council on Disability to Support Residential Choice!

 The vote is just a week away -- make your voice heard today!

Governor and Legislators Urged to Save Sonoma Developmental Center

Supporters rally in support of Sonoma Developmental Center, on Saturday,
Sept. 14, 2013. (Alvin Jornada / The Press Democrat)

Over the past few months a group of Parent Hospital Association (PHA) members has been working to bring together the voices of the many who value Sonoma Developmental Center (SDC) and send a clear message to Sacramento that SDC must be saved.

The center piece of their efforts has been a petion drive on MoveOn.org. Members also lobbied legislators in Sacramento and testified before the Future of Developmental Centers Task Force.

In addition, earlier this month Sonoma's City Council unanimously passed a proclammation in support of the Center, and last week Mary O'Riordan delivered over 2,300 signatures, along with a message from PHA, to Sacramento, urging the Governor and state legislators to continue the services at Sonoma Developmental Center as an option -- and resource -- for the developmentally disabled citizens of California. She then reported on the progress of the petition drive to supporters at a rally on Sonoma Plaza on Saturday.

The following is the letter that was delivered along with the signatures to Governor Brown and legislators:

---

Supporters rally on Sonoma Plaza for SDC

Saturday's rally was covered in the local press. You can find that coverage online at the following links:

Slide show in the Press Democrat

Article in Saturday's Press Democrat: Advocates rally in Sonoma to support Eldridge developmental center.

Some of the people who rallied in support
of SDC listen to speakers afterwards in the
amphitheater on Sonoma Plaza.

On Saturday, September 14, supporters of the Sonoma Developmental Center (SDC) rallied on Sonoma Plaza to show their support for the center and keeping the resources and care available at California's oldest center accessible to the State's developmentally disabled.

After circling Sonoma's square people gathered in the Plaza's amphitheater where Mayor of the City of Sonoma Ken Brown read the proclamation in support of SDC passed by the City Council earlier in the month. (see: Sonoma City Council Voices Support for SDC on this blog.) Also speaking were a number of Parent Hospital Association board members, as well as Gina Cuclis, a Sonoma Co. Board of Education Trustee who advocated on behalf of SDC to the City.

Mary O'Riordan also gave her report on the MoveOn.org petition that she delivered to the governor and legislators last week. Over 2,300 people have signed in support of SDC to date, and signatures continue to be collected. If you have not yet had a chance to sign and would like to, visit petitions.moveon.org/sign/governor-brown-save-sonoma.

You can also show your support for Sonoma Developmental Center (SDC) by writing to California's Health and Human Services Secretary asking her to keep SDC open and allow it to accept admissions.  Suggest that SDC's unique services be opened up to the community, and ask her to share your letter with the task force now meeting on the future of developmental centers.

Secretary Diana S. Dooley
California Health and Human services Agency
1600 Ninth St. Room 460
Sacramento, CA 95814

email Secretary Dooley via jim.suennen@chhs.ca.gov

If you would like to contact the governor, you can write him with the same message.

Governor Jerry Brown
c/o State Capitol, Suite 1173
Sacramento, CA 95814

City of Sonoma mayor Ken Brown
read the proclamation passed by the
Council supporting SDC.

Newly elected PHA boardmember
Rev. Tom Chesterman spoke at
Saturday's rally.

Longtime PHA member and past
board President Steve Doherty at
Saturday's rally.

Staunch advocate for SDC and PHA
member Paul Ferrario also spoke to
the crowd in the amphitheater.

Dates set for next Future of the Developmental Centers Task Force meetings

Save the dates for the next two -- including the final -- meetings of the task force that is considering the future of California's remaining centers for the developmentally disabled.

The California Health and Human Services Agency has just posted the dates. They are Tuesday, October 22, 2013 and Wednesday, November 13, 2013, both from 9:00 a.m. - 4:00 p.m., at the California Department of Rehabilitation, 721 Capitol Mall, Room 242, in Sacramento.

If you would like to testify, plan to attend the October meeting if you can.

For more information about the task force, including agendas and audio recordings of past meetings, visit www.chhs.ca.gov/Pages/DCsTaskForce.

Sonoma City Council Voices Support for SDC

At its regularly scheduled meeting September 4th, the Sonoma City Council unanimously adopted a resolution in support of Sonoma Developmental Center (SDC). The resolution had been put on the Council's agenda by Mayor Brown after he received requests for support of SDC from a number of people in the community. Several people in attendance spoke in support of the resolution; there was no opposition.

You can read an article on the Council's action in the Sonoma Index-Tribune at Council supports keeping SDC open, by Pam Gibson (09.05.2013)

---

SUMMARY

The Sonoma Developmental Center (SDC) faces an uncertain future. In June, the State Health and Human Services Agency formed a “Task Force on the Future of the Developmental Centers”. The Task Force was charged with developing a Master Plan to be completed by November, 2013, that addresses:

• The service needs of all developmental center residents
• The fiscal and budget implications of the declining population
• The aging infrastructure, staffing, and resource constraints
• The availability of community resources to meet the specialized needs of residents now living in developmental centers
• A timeline for future closures

First District Supervisor Gorin has established the Sonoma Developmental Center Coalition, which includes representatives from various County Departments and Agencies as well as representatives of the Parent Hospital Association (PHA).

CITY OF SONOMA RESOLUTION

A RESOLUTION OF THE CITY COUNCIL OF THE CITY OF SONOMA IN SUPPORT OF SONOMA DEVELOPMENTAL CENTER

WHEREAS, Sonoma Developmental Center (SDC) is woven into the fabric of Sonoma Valley having provided services since 1891; and

WHEREAS, Approximately one thousand acres of land, lakes, and various structures encompass the Sonoma campus, including a residential campground, store/cafeteria, post office, petting farm, sports fields, swimming pool, plant nursery, and picnic areas; and

WHEREAS, SDC has proven to be a leader in meeting the needs of people with developmental disabilities by providing an extensive array of services that promote ongoing health, learning, self- advocacy, and increased independence. Innovative social, recreational, educational, vocational, and other programs are continuously offered. This is accomplished through the knowledge, innovation, creativity, and enthusiasm of our highly experienced staff; and

WHEREAS, The most significant issue is the people who are served by SDC. The rights of the patients need to be protected and the rights of the families who need the care of their loved ones need to be protected; and

WHEREAS, SDC should remain open in order to continue providing its specialized, 24-hour care to California's most vulnerable developmentally disabled individuals, who for reasons of medical frailty, mental, emotional or behavioral issues, or other profound disabilities cannot function or survive in community care homes; and

WHEREAS, The Lanterman Developmental Disabilities Services Act, known as the “Lanterman Act,” is an important piece of legislation that was passed in 1969 establishing that people with developmental disabilities and their families have a right to the services and support they need to live like people without disabilities; and

WHEREAS, The State of California should view SDC as an asset that should continue to serve people with developmental disabilities including residents and nonresidents. The State should explore improving SDC's financial viability by making its specialized services available to all individuals with disabilities. For example, personalized wheelchair, shoe and equipment construction, occupational therapy and counseling; and

WHEREAS, As the provider of 1,200 good paying jobs, closing of SDC would have a severe impact on Sonoma Valley's and Sonoma County's economy.

NOW, THEREFORE, BE IT RESOLVED that the City Council of the City of Sonoma supports the continuing operation of SDC and requests that the State Task Force on Development Centers focus on the critical patient care supplied by SDC and that the ban prohibiting new admittances to SDC be lifted.

BE IT FURTHER RESOLVED that the City Council of the City of Sonoma recognizes that the
professional staff at SDC make a great contribution to the “quality of life” of the patients.

ADOPTED this 4th day of September, 2013

Kenwood Press Reports on 2nd Task Force Meeting

In late May of this year California Health and Human Services Agency Secretary Diana S. Dooley today announced she will establish a Task Force on the Future of the Developmental Centers. The Task Force was charged to develop a Master Plan that addresses the service needs of all developmental center residents, the fiscal and budget implications of the declining population, the aging infrastructure, staffing, and resource constraints, the availability of community resources to meet the specialized needs of residents now living in the developmental centers, a timeline for future closures and the statutory and regulatory changes that may be needed to ensure the delivery of  cost-effective, integrated, quality services for this special population.

On June 17th the Task Force met for the first time, and on August 19th the group convened for the second time, and The Kenwood Press has just published a report on that second meeting.

from the article...

"The people charged with formulating a plan to manage the future of California’s developmental centers received a massive amount of data from the state at their second meeting on Aug. 19. They will use it to help sort out the difficult questions raised at the first meeting.

“'We are attempting to compile and organize data on characteristics of those in the developmental centers, the resources available for those types of individuals, and the gaps in service,' task force member Kathleen Miller said after the all-day meeting in Sacramento. Miller is president of the Sonoma Developmental Center’s Parent Hospital Association (PHA), mostly parents, guardians and family of SDC residents.

"While initially cautious about the nature of the task force, given its mission to come up with a comprehensive plan by November to resolve issues that have beset the state, private providers, clients and parents for decades, Miller expressed quiet optimism about what’s happened so far.

“'I think Secretary Diana Dooley is really looking, genuinely searching for a path forward,' Miller said. 'She is approaching this with an open mind. I feel that would be the consensus of both sides represented on the task force.' Dooley heads the state’s Health and Human Services Agency.

“'We’re getting the data,' Miller added, 'with the help of the Department of Developmental Services. [Dooley] has been able to get data that I haven’t.'"

[read the full article here: Developmental Center Task Force forges on, by Jay Gamel, Kenwood Press 09/01/2013.]

Save the Date - Sept. 14 Rally for SDC on Sonoma Plaza

Parent Hospital Association members are planning to rally in support of Sonoma Developmental Center on Saturday, September 14, at Sonoma Plaza in downtown Sonoma. People will gather after PHA's general membership meeting, which is scheduled for 10 a.m. to noon, at McDougall Hall on the SDC campus.

Sonoma's mayor is expected to attend and a wrap-up report of the Governor Brown: Save Sonoma  Developmental Center petition on MoveOn.org will be given.

Plan to attend and show your support for developmental center care as an option for California's developmentally disabled residents!

More details to follow…

Department of Developmental Services Director Terri Delgadillo Announces Retirement

Yesterday Terri Delgadillo announced her resignation as the Director of the Depatrtment of Developmental Services (DDS) after thirty-five years of state service. She cited health issues as her reason. She will stay on until a replacement is found.

PHA is grateful to her for her years of service and her recent commitment to improve services at Sonoma Developmental Center.

PHA Meets with Legislators for the Future of California's Developmental Centers

Parent Hospital Association (PHA) members organized a lobby day in Sacramento on August 19th in conjunction with the second meeting of the task force that is considering the future of California's remaining developmental centers.

Sonoma families spent the morning meeting with legislators and the afternoon at the task force meeting. Many offered heartfelt testimony at the meeting about how Sonoma Developmental Center has served as a haven for family members for decades. In reporting back on the day's activities, PHA President Kathleen Miller said, "I was proud to be associated with PHA and such articulate and loving family members." Kathleen also serves as a member of the task force.

Offering both personal testimony and a unified message from PHA was a goal of the group. Below is the information presented that day to legislators, and anyone else interested in PHA, its goals, and concerns. All PHA members are welcome and encouraged to use the statement in any way.

* * *

WHO IS PHA?

Parent Hospital Association of Sonoma Developmental Center is a group of families and friends of Sonoma Developmental Center’s residents and former residents. We advocate for choice and individual supports for all regional center consumers.

PHA Core Beliefs

1. Transparency -- PHA members know that there has often been a climate of secrecy around issues surrounding both the developmental centers and community care. Decisions about funding and creation of services for individuals with developmental disabilities need to be guided by data and a clear understanding of what works, what does not, and where gaps in services exist.
   
2. Communication -- PHA members believe that open communication is key to resolving and preventing problems. Individuals and families need to be included in decision making. Decisions made without including those most affected are not in the best interests of anyone.
   
3. Options -- PHA supports consumer choice. Choice is only possible when positive options for living are available. PHA members support both developmental centers and community-based service options and believe the decisions about where to live should be based on individual needs and choices.

Current PHA Concerns

PHA members have concerns that the community system of services has gaps. We believe that the deflection policy from developmental centers has led to some individuals in the community to be denied a needed safety net. The current patch work of services for some challenging individuals, particularly those with behavior issues and dual diagnosis, represents very real risks to those individuals. Current plans to create locked perimeter delayed egress facilities are of grave concern as they are more restrictive than developmental centers and have less oversight.

Also of concern are medically fragile individuals, many of whom may not even make it to a community home but die during the closure process. There is a lack of data to supports that medically fragile survive in community settings at the same rate they do in developmental centers.

* * *

Read more about the task force on this blog:
California Health and Human Services to Establish Task Force for State Developmental Centers

Appointments Announced to Task Force that Will Consider the Future of California's Developmental Centers

First Meeting of Developmental Center Task Force Today in Sacramento

Legislators Urged to Keep Sonoma Developmental Center Open

The second meeting of the State task force considering the future of California's remaining developmental centers was held yesterday in Sacramento, and the first press report is in on the lobbying activities organized around the task force meeting. Many family and advocates for developmental center residents testified in support of maintaining centers as an option for some, while others lobbied for closure of all state-run facilities.

from the article:
“'The next 25 years of Mark's life should not be spent with caregivers who are recruited from Craigslist and promised a wage of $10 an hour,' Diane Halcromb said of her 50-year-old brother, Mark Dunkelberger, who has been a resident of the Eldridge facility since 1988.

"Halcromb was among several family members to address the task force, which is weighing California's role in providing services to 260,000 of the state's disabled residents, including 1,510 who reside in one of the state's four remaining developmental centers. With nearly 500 residents, Sonoma is the largest of those facilities.

"Fighting through tears, Marcella Harris described for the panel the struggle to find quality care for her autistic 17-year-old son. She said she finally obtained a court order for him to be placed at Sonoma, but not before he may have permanently blinded himself, the result of him banging his head against walls and repeatedly hitting himself.

"She now fears for his future with the court order expiring and his return to a group home in San Jose.
Harris told the task force that 'there's something wrong in the safety net. There's a hole in it.'"

According to the PD, "about 50 people who staged a counter-rally outside the Department of Rehabilitation building called for the immediate closure of developmental centers, which they say have led to rampant abuse of patients, out-dated models of care and a waste of taxpayer money"

You can read the entire article here: Families urge keeping Sonoma Developmental Center open, by Derek Moore, in The Press Democrat, 8/19/2013.

Join PHA in Sacramento for Lobby Day

We all know that these are challenging times. Secretary Dooley’s task force has a timeline for closure of the Developmental Centers as one of its stated agendas. The task force will meet on only three separate occasions over the next five months. Now is not the time to sit by and let the future -- and the future of those we love -- be decided by others. Join with Parent Hospital Association on Monday, August 19th at 9 a.m. for a Sacramento lobby day. Here is the plan:

1. Meet on the west steps of the capitol building between 9:00 and 9:30 a.m. We will meet as a group and plan and strategize. Bring pictures of your family member. Bring along kids and grandkids and teach them to be part of this.
2. To prepare for the day, schedule meetings with your representatives or their health aides. You will only have time to meet with three representatives so make them count. Plan on sharing your stories and the reasons why Sonoma is important to you. If you have concerns about community care, share them. Express simply why you believe it is not an option that will work for your family member.
3. Lunch on your own. (There is a cafeteria in the capitol basement.)
4. At 12:45pm -- no later -- meet again on the capitol steps. Remember the task force meetings are not held at the capitol building but at the Department of Rehabilitation Services. The address is 721 Capitol Mall, Sacramento, Room 242. PHA supporters should join the task force meeting at 1:00 p.m. You should be given three minutes to speak. Plan your statement carefully.

PHA needs to be strong now more than ever. The PHA Board continues to work hard to support you and your family member but we need your support. Please make plans to join us in Sacramento on August 19th aside and let your voice be heard. Together we will make a difference!

California State Capitol Building, 915 Capitol Mall #200
Sacramento, CA 95814
The west steps are on the 10th street side of the building.

A Look Back at the History of Sonoma Developmental Center

The Hill property in 1888, which soon afterward was acquired by the State of
California for what is now the Sonoma Developmental Center. The central area
of the modern SDC occupies the vineyard. The road above the vineyard was the
main route in 1888; Arnold Drive did not exist at that time. Courtesy Bancroft
Library, UC Berkeley, via Sonoma Valley Sun.

Sonoma Developmental Center has changed much over the many years of its existence. First established in the late 1800s as a place for the care of so-called "feeble-minded" children, it's role soon expanded to the care and training of feeble-minded people of all ages. The Center's role and the people it serves has continued to change over the last 100 years -- and the knowledge and expertise on how best to care for people with developmental disabilities, and other mental and physical handicaps, has continued to improve and expand.

The Sonoma Valley Sun has just published a fascinating profile of the Center's history. See: Just wondering about... Early days of the Sonoma Developmental Center, by Judy Blum (July 25, 2013).

The Home for the Care and Training of Feeble Minded Children, on the eastern
slopes of Sonoma Mountain, in 1910.

Kern Regional Center Management Troubles Threaten Services for the Disabled

Apparent financial impropriety at Kern Regional Center in Southern California has put the management of the Center under scrutiny. The regional center serves some 6,300 developmentally disabled people in the community through a host of different services, and the concern is now that those programs could be negatively affected by the fallout.

KGET is reporting that "Several top managers were let go a few months ago amid accusations hundreds of thousands of dollars were inappropriately pumped into their retirement accounts.

"It's public money, but new C.E.O. Duane Law won't talk about what happened.

"And, several organizations that partner with the non-profit say Law is taking the regional center in the wrong direction."

(see: Kern Regional Center troubles on www.kget.com)

The report from KGET goes on to say:

"KRC is fully funded by the state and spends in the neighborhood of $130 million a year for Kern, Inyo and Mono counties on services for the disabled. Social programs like Inclusion Films that gives local autistic teens a taste of the industry.

"But, a fight behind the scenes of the Kern Regional Center threatens to derail things."

Audit of State Centers Spurs Calls for More Oversight

The California State Auditor issued a report earlier this month that concluded poor-quality investigations, outdated policies, leadership and staffing problems, and untimely licensing reviews at the State's four remaining developmental centers put residents at risk.

see:
Abuses not properly investigated,
in The Porterville Recorder
Audit finds California developmental centers botched abuse investigations,
in The San Luis Obispo Tribune
California State Auditor report, issued July 9, 2013

In response to the audit and other reports of lapses in care in recent months, advocates called on Gov. Jerry Brown this week to appoint an independent figure to improve safety at state-run care facilities. (see: More oversight sought at developmental centers, in the San Jose Mercury News) Those advocates ultimately want closure of all state-run centers.

California Health and Human Services Secretary Diana Dooley created a task force last month to determine how best to meet the needs of developmental center residents. PHA President Kathleen Miller is a member of the task force, which is expected to release a report in November.

In response to the article in the Mercury News, PHA member and past President Mary O'Riordan commented,

"The Governor needs to appoint an independent, non-biased, consultant to evaluate the entire system, not just the developmental centers. As unfortunate as it is that bad things happen from time to time in a developmental center and even if the reporting is sometimes not timely, at least it does get reported and fixed. Contrast that with private homes where there is no oversight, no quality assurance, no regulations or stringent licensing requirements, and you are putting frail, vulnerable, helpless people at greater risk of abuse and neglect. Reference the Dr. David Strauss Reports from the aftermath of the Coffelt settlement when the state hastily removed thousands of people from the developmental Centers and the mortality rate was as much as 80% higher in some instances. Please, Governor Brown fix what needs fixing and don't listen to the cries for closure of these centers by people who need to fill beds in the private homes and have a lot to gain from the closure of these centers now and in the future. They are looking at several contracts if these centers close. Listen to the families who know that in spite of these unfortunate instances, the everyday care at these centers is still excellent."

SDC Families Invited to Comment on Policy Revisions

Policies currently undergoing revision and updating at Sonoma Developmental Center (SDC) have been circulated for comment by family and others connected to Center residents. We are providing links to copies (pdf) for you to download -- or review online.

It is important to know that these are DRAFT copies and will be available during the two-week review period only. [Files have now been removed.]

Please take the time to review the policies and offer your input. You can leave your comments here on the blog -- or email them to Parent Hospital Association at info@parenthospitalassociation.org -- and Kathleen Miller will see that they reach the appropriate person at SDC.

• 440
  INFORMED CONSENT: CAPACITY AND CONSENTERS
  
• 441
  INFORMED CONSENT: ADMISSION CONSENT FOR CARE AND TREATMENT
  
• 442
  INFORMED CONSENT: CONSENT TO MEDICAL/SURGICAL/DENTAL PROCEDURES &/OR SEDATION/ANESTHESIA & SPECIAL CONSENTS
  
• 443
  INFORMED CONSENT: AUTHORIZATION FOR AND CONSENT TO RESTRICTIVE INTERVENTIONS
  
• 1171
  CONSENT FOR MEDICAL RESTRAINTS/RESTRICTIVES
  
• 1172
  CONSENT FOR BEHAVIOR ACCESS PROGRAM

This is an important opportunity to support staff in the continued improvement of care and services at Sonoma Developmental Center.

Kenwood Press Reports on First Task Force Meeting

The first meeting of the task force, formally known as the “Future of the State Developmental Centers Task Force,” was held on June 17, in Sacramento. The nineteen task force appointees, who have various connections to the care of the developmentally disabled, have been tasked with addressing the future of California's developmental centers as a component of that care.

Parent Hospital Association president Kathleen Miller is a member of the task force and attended the June 17th meeting.

The Kenwood Press has published a report on that first task force meeting. From Task Force deciding fate of developmental centers, by Jay Gamel, in The Kenwood Press, (07/01/2013):

California Health and Human Services (CHHS) Secretary Diana Dooley announced the formation of a task force on the future of developmental centers – including Sonoma Developmental Center – in May. The task force is charged with producing a “written master plan that addresses (1) the effective and efficient delivery of integrated services to meet the specialty needs of developmental center residents; and (2) the fiscal implications of developmental center operations, including the cost of resident care and services, maintenance of aging infrastructure, and utilization of existing resources.”

Just how this large group will accomplish all this by Nov. 14, still isn’t clear, according to some task force members.

“The concern I expressed to Secretary Dooley is what can we accomplish in four meetings," Kathleen Miller said. "There are people on both sides of the fence who won’t necessarily agree. I don’t feel like that question has been answered.” Miller, whose son has been an SDC resident for many years, is president of the Parent Hospital Association and is a strong advocate for keeping at least some parts of the developmental center functioning to serve the most severely disabled residents.

read the complete article...

The article includes comments from other task force members.

ADDITIONAL INFORMATION ABOUT THE TASK FORCE

Anyone with questions or concerns should contact Jim Suennen, Associate Secretary at California Health and Human Services Agency, at (916) 651-8056 or email jsuennen@chhs.ca.gov.

For updated information, including meeting agendas, about the Task Force, see the California Health and Human Services Agency page at: www.chhs.ca.gov/Pages/DCsTaskForce.aspx