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DISABILITY RIGHTS NEWS REPORT
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REMEMBERING SHIRLEY KLEIN WHO DIED AT AGE 74
Report #067-2007  May 7, 2007 Monday
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Agnews Developmental Center
* Senate Budget Subcommittee Will Hear Follow Up On Outpatient Clinic
* Will Hear and Take Possible Action on Clinic and Other Health Issues
* Assembly Action Will Be Needed

SACRAMENTO -  The Senate Budget and Fiscal Review Subcommittee #3 on Health, Human Services, Labor and Veteran Affairs will likely take several actions  this afternoon (May 7) as a  follow-up from its April 9th hearing on the need for health clinic services and other comprehensive health services for people with developmental disabilities transitioned or who will be transitioned out of Agnews Developmental Center scheduled for closure by June 30, 2008.   [A copy of the Senate budget subcommittee agenda is available at the CDCAN website at www.cdcan.us]  The Senate Budget Subcommittee is meeting after the adjournment of the Senate Floor session (which was scheduled to convene at 12 noon) at the State Capitol in Room 3191. 

The Senate Budget Subcommittee, chaired by Sen. Elaine Alquist (Democrat - San Jose), whose district includes the state owned and operated health facility, heard on April 9th testimony from dozens of family members and advocates, including representatives from various regional centers in the area, and also from Bay Area local health plans who will be helping to provide community-based health services for those who are moved out of Agnews into the community.  While some families had major concerns about the transition of people moving out of Agnews, no one testified against closure, though keeping the facility open was still something that some of the families would have preferred. 

Background of the Closure of Agnews Developmental Center in San Jose
* Governor Gray Davis first announced intentions to close as part of his proposed State budget in January 2003
* The actual plan to close Agnews Developmental Center was developed over a three-year period and submitted to the Legislature in January 2005 as part of Governor Arnold Schwarzenegger's proposed State budget for 2005-2006. The plan was approved by the Legislature as part of the 2005-2006 State Budget. 
* Separate legislation critical to the implementation of the plan was passed and signed by the Governor covering differing elements of the closure and transition including housing, staffing and new types of homes and facilities.  The legislation included:
AB  2100 (Assemblymember Steinberg) in 2004  dealing "family teaching" model homes and authority to purchase housing stock
AB 1378 (Assemblymember Lieber) in 2005 dealing with State staff
SB 962 (Sen. Chesbro) in 2005 dealing with different type of licensed home
SB 643 (Sen. Chesbro) in 2005 dealing with Medicaid nursing facility waiver
* As part of an Agnews resident's Individual Program Plan (IPP) under the California Lanterman Developmental Disabilities Services Act (Welfare and Institutions Code), includes a process - prior to transitioning from Agnews - that each Agnews’ resident will receive a comprehensive nursing and risk assessment, which is then used to develop a Health Transition Plan that is incorporated into that person's  Individual Program Plan.
The Health Transition Plan is supposed to detail how each health need will be met following transition from Agnews, as well as the provider of each service.
* The last two previous closures of Developmental Centers (Stockton Developmental Center in 1996 and Camarillo Developmental Center  in 1997) resulted in the transfer of most of the residents to other state-operated facilities.
* The plan to close Agnews Developmental Center is significantly different  because it intends to move the majority of people into commuity-based settings, tied to the development of  improved and expanded community service delivery system in the Bay Area.
* Some families who have loved ones at Agnews Developmental Center, while no longer opposing closure, raised concerns at the April 9th Senate hearing - and the April 11th Assembly budget subcommittee hearing,  regarding the readiness, quality and availability of those community-based services, including continuation of the outpatient clinic. A few mentioned major concerns about health services for persons transitioning, and cited the death of at least one former Agnews resident in the community.  Others urged the subcommittees in both houses to look at alternatives for housing including a proposal by "Keeping Our Families Together".
* Other community advocates sympathized with the families concerns, but felt that community-based services and supports would be there for their loved ones, citing numerous cases of  persons with developmental disabilities who have successfully  transitioned from a development center or other similar health facility with disabilities and health needs similar or greater than those who still reside at Agnews. 

Background on Agnews Developmental Center Outpatient Clinic
The Department of Developmental Services, under the California Health and Human Services Agency, oversees the operations of both the regional centers and state owned and operated developmental centers (plus two smaller facilities). The Department of Developmental Services expanded in March 2006  the health facility license of Agnews to provide outpatient medical services to persons with developmental disabilities who reside in the community (both individuals who have transitioned from Agnews, as well as other persons with developmental disabilities living in the surrounding area). Medical staff from Agnews Developmental Center  is used to provide the health services.
* The Department of Developmental Services reported at the April 9th Senate subcommittee hearing, that the Agnews outpatient clinic has provided over 230 services to a total of 185 consumers. The most frequently uses services are dental (used 128 times according to the department), primary medical care, psychiatry and neurology.

What the Senate Budget Subcommittee Did on April 9th:
* Operations and New Positions - Increased the Regional Centers Operations budget by $503,000 ($126,000 in State general funds) and 4 positions for the three Regional Centers in the bay area closest to Agnews (San Andreas Regional Center based in San Jose, Regional Center of the East Bay based in Oakland and Golden Gate Regional Center based in San Francisco) to hire 3 Chief Health Care Community Specialists and one Assistant Health Care Community Specialist.
* Budget Related Legislative (Trailer Bill) Language -  Adopted budget related legislative language (referred to as a "trailer bill" because it follows or trails the main budget bill)  to ensure the continuity of health care, of persons transitioned out of Agnews by requiring the  Secretary of the California Health and Human Services Agency to verify that the Department of Developmental Services and the Department of Health Care Services
have established protocols to ensure accountability within the state agencies, including the Regional Centers impacted and the health plans participating in the Medi-Cal Program who will be providing health services to persons transitioned or who will be transitioned out of Agnews. 
Note: The Assembly Budget Subcommittee on Health and Human Services also approved this language at its April 11th hearing. 
* More Information from Department of Developmental Services - the subcommittee heard extensive testimony urging the continuation of the Agnews Developmental Center Outpatient Clinic beyond the closure date of Agnews Developmental Center, scheduled for June 30, 2008.  The Department of Developmental Services said at the hearing that it needed to research the issues for different options regarding continuing these services.  The Subcommittee directed the Department of Developmental Services to provide additional information, such as clarification of state licensure requirements, the potential for operation after June 30, 2008 and related matters for the May 7th hearing. 
* Community Health Care Capacity Options - Sen. Alquist, also directed Senate Budget Subcommittee staff to review options for increasing the existing community based health care services capacity since data from the Agnews Outpatient Clinic seemed to indicate a need for such services for people with developmental disabilities living in the surrounding community as well.
* Department of Health Care Services Intent for Higher Reimbursement - the Senate Budget Subcommittee heard testimony from a panel that included the Santa Clara Family Health Plan and the Alameda Alliance for Health who are two of the three Bay Area health plans that the Department of Developmental Services and the Department of Health Care Services are working with to provide a permanent health services for persons  transitioning  from Agnew’s. During the April 11th  hearing, the Department of Health Care Services testified that it was their intent to reimburse the those health care plans at a not yet established  initial "interim rate" to reimburse costs.  The Department of Health Care Services said that these health care plans would then provide utilization (use of services) data regarding the health care services provided, and the department would then “settle-up” the remaining costs. Subcommittee members and staff noted that no written information and no existing State law or other authority has been cited by the Department of Health Care Services to actually implement this. 

Action that the Senate Budget Subcommittee Staff Recommends For May 7th Hearing
At the direction of subcommittee chair Sen. Alquist, the subcommittee staff is recommending that the following action be taken at the May 7th hearing (subject to change at the hearing) Assembly has not taken action on any of these items yet::
1. Budget Related Legislative Language for Outpatient Clinic -  Recommend that the subcommittee adopt budget related legislative (trailer bill) language to have the Department of Developmental Services  continue operation of the Agnews Outpatient Clinic until the state disposes of the Agnews property in order to continue the continuity of care for consumers. [Note: handout will be passed out to subcommittee with proposed language]
2. Budget Bill Language - Wellness Initiative - Recommend that the subcommittee adopt Budget Bill Language (Item 4300-101-0001) to utilize funds appropriated for the Wellness Initiative for the Department of Developmental Services  to purchase two Mobile Clinics which will be specifically
outfitted to provide a range of health and medical services, as determined by the Department of Developmental Services in working with constituency groups as deemed appropriate. The Department of Developmental Services  may purchase these Mobile Clinics using a competitive process but is to be exempted from public contract code due to the need to ensure the protection of public health and welfare. [Note: handout will be passed out to subcommittee with proposed language]
3. Budget Related Legislative Language - Department of Health Care Services Commitment - Recommend that the subcommittee adopt "placeholder" budget related (trailer bill) language to codify (put into State law)  the Department of Health Care Services verbal commitment to the Subcommittee and the local health plans regarding the reimbursement to be provided under the Medi-Cal Program for services to be provided for individuals transitioned from Agnews to the community. [Note: "placeholder" means language that does not contain specifics but is holding the place for details that the subcommittee will develop later.  The "placeholder" language usually contains the general idea or concept of what the subcommittee wants, and if both houses approve the placeholder language, then subcommittee staff will work out final language later]
4. Future Use and Operation of Mobile Clinics - Senate Budget Subcommittee staff notes that that the clinics could be eventually granted to (1) a non-profit entity, such as a Regional Center and/or the three Bay Area health plans (all are non-profit entities); (2) a County (i.e, Santa Clara, Alameda and/or San Francisco) to be operated as a Federally Qualified Health Care (FQHC) Clinic to obtain cost-based reimbursement as recognized by the federal government; and/or (3) used under Sonoma Developmental Center’s license and be operated by state employees (including Agnews employees). Budget subcommittee staff recommends that there are many options available that need to be further explored but offer benefits to the community and can be made workable from a fiscal perspective. A community-state partnership is needed and is necessary to make all of this work.
5. Budget Act of 1998 and Wellness Initiative - Senate Budget Subcommittee staff notes that through the Budget Act of 1998, the Legislature first appropriated $1 million (General Fund) to the Department of Developmental Services  for the Wellness Initiative, for the purposes of improving the health, welfare and safety of people with disabilities living in the community. Since then, the Department of Developmental Services has used those funds to meet a wide variety of health needs, such as determining best practices for meeting nutritional needs for individuals or for providing dental services, as well as many, many other uses. Subcommittee staff says that the Wellness Initiative funds have been continued as part of the budget since this time. The funds are available for the purposes in transitioning people from Agnews, with the Department of Developmental Services informing the Senate budget subcommittee that there presently are no identified projects as yet for the 2007-08 State budget year for the expenditure of these funds.
6. Proposed Modifications to Reporting Information Regarding Agnews Closure Recommends that subcommittee, based on desire of the subcommittee in April after hearing public testimony, to collect more information regarding the Agnews closure transition, to add the following provisions to existing Budget Bill language  - originally developed in 2005 as part of the original closure plan (the proposed additions recommended by the Senate budget subcommittee are underlined and in italics.)

“The state Department of Developmental Services shall provide the fiscal and policy
committees of the Legislature with a comprehensive status update on the Agnews
Plan, on January 10, 2008 and May 15, 2008, which will include at a minimum all of
the following:
(a) A description and progress report on all pertinent aspects of the communitybased
resources development, including the status of the Agnews transition
placement plan.
(b) An aggregate update on the consumers living at Agnews and consumers who
have been transitioned to other living arrangement, including a description of the
living arrangements (model being used) and the range of services the consumers
receive.
(c) An update to the Major Implementation Steps and Timelines.
(d) A comprehensive update to the fiscal analyses as provided in the original plan.
(e) An update to the plan regarding Agnew’s employees, including employees who
are providing medical services to consumers on an outpatient basis, as well as
employees who are providing services to consumers in residential settings.
(f) Specific measures the state, including the Department of Developmental Services
and the Department of Health Care Services, is taking in meeting the health,
mental health, medical, dental, and over all well-being of consumers living in the
community and those residing at Agnews until appropriately transitioned in
accordance with the Lanterman Act.

REMEMBERING SHIRLEY KLEIN
[CDCAN Note: I will include other selections of her poems in my tribute to Shirley and post on the CDCAN website]

Signing of the ADA (Dedicated to my father, William Klein, who died the next day)
By Shirley Klein

When the last pen stroke died
my father slept assured
that promises would finally open their front doors to me
which I could enter on ramped opportunities
into broad hallways
that no longer held the tyranny UPSTAIRS,
- that I could see the splendor of Beethoven
or feel the texture of Michaelangelo;;
- that I could read the voice of a distant child
or hear the softness in my lover's eyes
or type the answer to my mother's touch
- that my learning would be measured by my will
and not by barbed numbers
- that my wheels could take flight to open adventures
or ride the rails of access through the beauty of my land
Yes, my father could finally rest
After the pen parted the waters
And he saw me to the shore
That had eluded us so long

Published 1993 - Seedlings

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MANY THANKS to Manteca CAPS, Training Toward Self Reliance, UCP, California NAELA, Californians for Disability Rights, Inc (CDR) including CDR chapters, CHANCE Inc, Parents Helping Parents, Arriba, Strategies To Empower People, Parents Helping Parents, Asian American parents groups, Resources for Independent Living and many other Independent Living Centers, several regional centers, People First chapters, IHSS workers, other self advocacy and family support groups, developmental center families, and hundreds of individuals.