Tuesday, October 15, 2013

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.

Thursday, October 10, 2013

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.

Tuesday, October 1, 2013

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
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