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Marty Omoto -  martyomoto@rcip.com   website:   www.cdcan.us
  Report #160-2007  - October 25, 2007 - Thursday
 
Assembly Human Services Committee 10/24 Info Hearing
* AB 12 Pilot Could Help Direct Worker Health Care Says Beall
* Autism Commission Presents Findings and Recommendations
* Direct Care Worker Wages, Retention and Training Highlighted
 
SACRAMENTO (CDCAN) -  With a huge growing State budget shortfall of over $10 billion projected for next year, the soaring costs of healthcare coverage for thousands of workers employed by community-based organizations serving children and adults with developmental disabilities was one of the critical issues  highlighted during the Assembly Human Services Committee informational hearing on the Lanterman Developmental Disabilities Services Act held Wednesday (October 24) at the State Capitol. 
 
California Only State In Nation To Have Civil Rights Law for Persons with Developmental Disabilities
No other state in the nation has a similar law, which is named after the Republican Assemblymember, Frank Lanterman, who authored the legislation that was passed in 1969 and signed into law by then Governor Ronald Reagan. 
 
Over 220,000 children and adults with developmental disabilities are currently served by the 21 non-profit regional centers overseen by the Department of Developmental Services.   Thousands of community-based organizations and individuals provide actual services and supports in the community. Included in the total number are about 3,000 people with developmental disabilities who reside in the five state owned and operated developmental centers and also two other smaller facilities.  Included in the total is another 8,900 or so persons with developmental disabilities reside in privately owned or operated health facilities (skilled nursing facilities and intermediate care facilities).
 
According to the most recent data from the Department of Developmental Services, 86,500 persons (or 42% of the total population served under the Lanterman Act) are white, followed by 67,000 persons (32%) who are Hispanic, 20,900 who are African-American (10%), 11,800 who are Asian-American (6%), 4,165 who are Filipino (2%), Native Americans 822 (0.4%) and Pacific Islanders with 458 persons (0.2%) and others making up 16,359 persons or 8%.
 
Second Informational Hearing Set For November 16th in San Jose
November 16, 2007 - Friday afternoon  1:30 PM to 5:00 PM
Campbell Community Center - Roosevelt Room
1 West Campbell Avenue
Campbell, CA (near San Jose)
Subject: "The Lanterman Act: Expanding Opportunities for Employment and Community Participation for People with Developmental Disabilities"
 
Note: CDCAN is planning a series on of on-going community hearings on Olmstead,  the Lanterman Act and other related disability, senior and mental health issues.  For more information see special CDCAN reports or go to CDCAN website at www.cdcan.us
 
Olmstead Informational Hearing Set for November 14th
Though not directly connected to the Assembly Human Services Committee, another panel, the Assembly Aging and Long Term Care Committee has scheduled an informational hearing that directly impacts persons with developmental and also other disabilities, mental health needs and seniors. 
That informational hearing will focus on California's implementation of the 1999 US Supreme Court Olmstead Decision, which required the states to take measures to avoid the unjustified institionalization of persons with disabilities and seniors.  That informational hearing is scheduled for November 14th, Wednesday from 10:00 AM to 12:30 PM , at the Wilshire Grand Hotel, 930 Wilshire Boulevard, in Los Angeles. See separate CDCAN Report for more details. 
 
Oct 24th Hearing Focused on Autism Commission Report and Worker Issues
The October 24th Assembly Human Services informational hearing, the first of two scheduled, started off first with a report by the Legislative Blue Ribbon Commission on Autism's findings and recommendations to the Legislature and Governor. The hearing also included four panels focusing on worker issues, including a panel of adults with developmental disabilities (Jonathan Rosinus, Darcy McCann, and Nick Feldman)and a support worker (Tamara McClatchey, of Becoming Independent in Santa Rosa)  - sometimes referred to as a direct care worker. That panel testified about the impact on their lives of high turn-over of workers due to low wages, and the need for training.  Two other panels, including representatives from regional centers and providers, community colleges, and SEIU (Service Employees International Union)  spoke, covering other areas of worker retention, wages and training, including the impact on person centered planning. 
 
Terri Delgadillo, director of the Department of Developmental Services,, provided an update on the state's response regarding the fires in Southern California and that has impacted persons with developmental disabilities, and also provided a brief update on what the department is doing, including a focus on employment of people with developmental disabilities.
 
Public testimony followed at the end of the hearing, including testimony provided by several persons with disabilities, family members and providers.  Several persons who testified included persons with developmental disabilities and family members who are participating in an advocacy training program called "Partners in Policymaking".  For many of those persons, it was the first time testifying at a real legislative hearing in the State Capitol. 
 
Assemblymembers Express Support for Workers - But Budget Deficit Fears Raised
No votes on any actions are taken at informational hearings, though the committee chair, Assemblymember Jim Beall, Jr. (Democrat - San Jose, 24th District) and committee members in attendance - Assemblymembers Tom Berryhill (Republican - Modesto, 25th District) and committee vice chair,  Mike Davis (Democrat - Los Angeles, 48th District) , Mark DeSaulnier (Democrat - Martinez, 11th District), and Paul Krekorian (Democrat - Burbank) all pledged to continue to look at ideas and possible solutions.
 
But with a budget deficit that many analysts predict will swell to over $10 billion - finding money for many of the suggestions and recommendations to help services and programs - including increasing worker wages, will not be an easy task - a point of view echoed by virtually every member of the committee who was present.
 
Most analysts agree that a huge budget deficit next year could mean budget proposals that will reduce, freeze or cut spending on many programs and services, including those that impact people with disabilities, mental health needs and seniors. 
 
Worker Health Care Costs Highlighted  - Beall Says AB 12 Pilot Might Help Provide Possible Solutions
The health care issue, which has been raised publicly as a top priority by Governor Arnold Schwarzenegger, Assembly Speaker Fabian Nunez (Democrat - Los Angeles), Senate President Pro Tem Don Perata (Democrat - Oakland), and also by Sen. Sheila Kuehl (Democrat - Santa Monica), while not the main focus of the informational hearing, was raised by at least one community-based provider as a critical issue in keeping their doors open - and to hire and retain good workers.  Training Toward Self Reliance (TTSR), said that their health care insurance coverage costs continues to soar, draining tens of thousands of dollars more each year, - increasing 12% since last year, while state funding to pay for providing services to adults with developmental disabilities to live independently remain frozen. Nancy Chance, executive director of TTSR, said her health care costs for her 45 employees grew from $76,000 in 1999 to $197,000 this year, while cost containment measures imposed by the State continues to freeze funding to her agency that serves over 300 persons with developmental disabilities. 
 
The issue of health care for workers and the rising costs for community-based organizations to provide it was raised also by the Autism Commission report.
 
Assemblymember Jim Beall (Democrat - San Jose), committee chair said he understood the dramatic impact of health care costs on community-based agencies and workers with some possible help being addressed in a pilot program in Santa Clara County in legislation, AB 12 authored by him, that was recently signed by Governor Schwarzenegger. The funding for that bill was made possible in part because of a special Medicaid grant. 
 
What AB 12 Pilot Program Does
AB 12 creates the "Adult Health Coverage Expansion Program", a pilot project administered by the county's health care system, to provide health care coverage to 5,000 or more low-income adults who reside in Santa Clara County and who are employed in small Santa Clara County businesses - including small community-based organizations who provide supports and services to persons with disabilities.  The program can exceed 5,000 persons if approved by the Department of Managed Health Care and defines small business as Define "small business" to mean an entity located in Santa Clara County that employs 50 or fewer persons, with at least 35% of the employees earning less than 350% of the federal poverty level for a family size of one, and that has not offered health care coverage to its employees for the past 12 months, provided that the provisions of any such prior coverage required the employer to contribute at least 50% of the total amount of the premium for  that coverage.  Include individual franchise outlets within the definition of a small business.
 
The county's health care system, called the Santa Clara Family Health Plan, is a state licensed managed care plan (Knox-Keene licensed health plan) that currently provides coverage under Medi-Cal, Healthy Families, Healthy Kids, and Medicare programs.
 
Beall, who also sits on the Assembly Budget Subcommittee on Health and Human Services that reviews developmental services, Medi-Cal, In-Home Supportive Services, SSI/SSP (Supplemental Security Income/State Supplemental Payment) and other programs that impact people with disabilities, mental health needs and seniors, said that the Santa Clara County pilot program goal is to improve the health status of low-wage workers, including those employed by community-based organizations serving persons with disabilities, by providing participants with coverage and access to comprehensive,  primary, and preventive health care through the county's existing health care system. 
Beall, who has an adult step-son with developmental disabilities and is a former Santa Clara County Supervisor, said that his bill shares responsibility for funding the health care coverage  - called a "three-share" model, in which portions are contributed by the employer, employee and by the county, which will use funds from a special Medicaid demonstration grant awarded recently to the county by the Department of Health Care Services. In April 2007, Santa Clara County was selected by the Department of Health Care Services to receive $20,700,000 yearly for three years beginning September 2007 in federal funding under the Health Care Coverage Initiative to implement expanded coverage for adults in Santa Clara County. 
 
Other Worker Issues Main Focus of Hearing
Other major issues impacting hiring and retention of thousands of workers - sometimes referred to as direct care workers - included outlining the problems, the need for training and examples of training programs and the impact of low wages. 
Tens of thousands of persons work in various programs and services for persons with  developmental disabilities including those in supported living services, independent living services, supported employment, work activity programs, day programs, respite programs, recreational and social programs, residential services, certain types of health facilities and other programs.  These workers and programs are in addition to other services and programs for persons with disabilities - that also serve children and adults with developmental disabilities, including In-Home Supportive Services and special education. 
 
Three panels were devoted to covering different aspects of direct care worker issues - though many of those issues were previously in legislative budget hearings and in policy committees on bills impacting workers, including most recently, AB 1427 by Assemblymember Paul Krekorian (Democrat - Burbank). 
The Autism Commission report also underscored the need for increased worker wages and training.
 
One panel highlighted the impact of low worker wages and training on person centered planning, with updates by regional centers, a provider representative and an update from University of California, Berkeley, Center for Labor Research and Education.
 
Another  panel focused on training, including a report on a program at Taft Community College near Bakersfield serving people with developmental disabilities on independent living, and also one focused on training for direct support staff, who can earn an Associate of Arts degree upon completion.  A report on how community colleges provide a career ladder for direct care workers and an update on the College of Direct Support (implemented by Arc California) was also given as a part of this panel. 
 
The subject of low wages and benefits for persons who work to provide services and supports to children and adults with disabilities in general and specifically persons with developmental disabilities, has been an on-going issue for decades now, and was the focus of a October 1999 California State Auditor's Report that said "any additional funding should be earmarked specifically for increasing compensation for qualified direct care staff and reducing the caseloads for regional center case managers". 
 
See separate CDCAN Report for more details and coverage on the worker issues covered in the hearing. 
 
LEGISLATIVE AUTISM COMMISSION PRESENTS REPORT
Sen. Darrell Steinberg (Democrat - Sacramento), chair of the California  Legislative  Blue  Ribbon  Commission on Autism, Dr. Lou Vismara, senior staffer to Senate President Pro Tem Don Perata (Democrat -Oakland) who also provides staff support to the commission (along with executive director Sue North) and commission member Rick Rollens, a parent of a child with autism, presented the Commission's findings and recommendations at the Assembly Human Services Committee informational hearing.  For a copy of the full report and executive summary, go to the CDCAN website at www.cdcan.us
 
Commission Created By Senator Perata's Legislation in 2005
The commission was created by SCR 51 by Senate President Pro Tem Don Perata in 2005, to identify the gaps in programs,  services,  and  funding  for  autism spectrum disorders and to develop  recommendations to close those gaps, to the State Legislature and Governor  Arnold Schwarzenegger to address  these  gaps.  New legislation this year (SCR 55), also by Sen. Perata, was passed that extended the work of the commission (originally set to end November 30, 2007) to November 30, 2008. 
All through 2006 and this past year, the Autism Commission, composed of appointees of the Senate and Assembly, including many parents and advocates, held a series of hearings and meetings at the State Capitol and in several locations across the state.  
 
The commission intends to work to introduce legislation to implement many of the recommendations they have made, and also urge the Governor and Legislature to make the issues connected to autism spectrum disorders a "high priority" and a coordinated approach to addressing and solving the problems.
 
Commission Says Several Issues Need Further Work
The Commission said it was not able, given the time-frame and resources, to identify and make recommendations on many other issues impacting persons with autism spectrum disorders and their families, but said that further work  and analysis was needed to find solutions to these following problems not addressed in the commission's recommendations:
* There  is  an  insufficient  number  of  developmental  pediatricians,  speech  and  language  therapists, behavioral therapists, occupational  and  physical  therapists,  psychiatrists, psychologists,  neurologists,  and other health care providers to provide services  to individuals  with autism spectrum disorders.  
* Low-income  Californians  who  receive  health  and  mental  health  care  services  through  the  Medi-Cal  program  experience  serious  problems  locating  primary  care  and  other  health  care  providers  with autism spectrum disorder expertise.  
* A diagnosis of autism does not entitle children and youth who are full-scope Medi-Cal eligible and under age 21 to receive specialty  mental  health  services  through  county  mental  health  plans  under  the  Early and Periodic Screening, Diagnostic,  and  Treatment (EPSDT)  benefit.  
* There is a need for long term quality assurance and monitoring of the efficacy, or alternatively any specific risks, of the interventions  and treatments provided to individuals with autism spectrum disorders.
* The  needs  of  older  adults  with  autism spectrum disorders must  be  addressed  in  a  comprehensive  way  as  the  population,  their  parents,  and  other  caregivers  for  this  population  age. 
* There isa far-reaching problem of inadequate compensation and other incentives for service providers across systems of care to serve persons with autism spectrum disorders and other special needs. 
 
Findings of the Autism Commission
1. There is a significant number of children  with autism spectrum disorders who have not been screened, assessed,  or  referred  to  early  intervention  services in an appropriate  and  timely  manner. These delays are longer and occur with more frequency in underserved  populations and communities. 
2. In many communities, public awareness, education, and outreach efforts on autism spectrum disorder programs and services must be  intensified and expanded. 
3.  Many existing systems of care are very  complex,  and a significant  number of families confront  major  barriers  in  accessing  and  navigating  programs  and  services. Transitions  across  systems  and  programs  are  especially difficult  for children with autism spectrum disorders at age three.  In addition, families report problems accessing services through their health insurance coverage. 
4. There are many autism spectrum disorder programs and services that require greater coordination and integration to comprehensively  and  effectively serve individuals with autism spectrum disorders throughout their life span. 
5. Many  programs for persons with autism spectrum disorders are often categorical in nature with eligibility criteria and the types of services  offered that may vary across the state. 
6. Many such programs  and services could  be improved by the availability of additional resources, infrastructure, and supports to meet the needs of all  individuals with autism spectrum disorders and their families. 
7.  Many programs and  services would benefit from the availability of additional  professional and  paraprofessional development and  training. 
8. Some programs serving persons with autism spectrum disorders that  involve  the  public  and  private  sectors  require  clarification  about  the  roles  and  responsibilities  of  each  group  that  provides  services. 
9. In  many  regions of the state, some  programs, services, and  persons who are involved with and respond to specific emergencies, such  as medical and public safety responders, require additional information and training on autism spectrum disorders.  
10. Many programs that provide services to individuals with autism spectrum disorders and their families could benefit from additional  resources and assistance to promote effective strategic planning, communication, and collaboration between service agencies  and  consumers and  their  families,  and  thereby  also  avoid  contentious  disputes. 
11. Some highly effective programs and services for persons with autism spectrum disorders should be identified, analyzed, evaluated,  and replicated throughout the state.
12. Throughout  the state,  there is an intense need to plan for and address the impending housing,  transportation, employment, and  educational  needs of the huge number of young people with autism spectrum disorders who will soon transition  into community settings.  
 
Recommendations of the Autism Commission
The  recommendations  made by the Commission are linked to the  three  key  areas  identified  in  Senate  Concurrent  Resolution  51:  
1. Early  identification  of  autism spectrum disorders
2. Education  and  treatment  of  children,  adolescents,  transitional  youth,  and  adults  with  autism spectrum disorders
3. A  comprehensive  and  integrated  continuum  of  programs,  services,  and  funding  required  to  address  the  "aging  out"  of  children  who  comprise  the  current  autism  epidemic
.  

EARLY IDENTIFICATION AND INTERVENTION   
* Establish a demonstration  project at  multiple sites that will serve as a template to expand early identification programs. 
* The demonstration project should focus on distressed communities; ensure the timely diagnosis of and intervention  for  children  with  autism spectrum disorders; improve collaboration  among  providers; provide support to families  and caregivers; establish a seamless  system  for  service  delivery between regional  centers  and  local  education agencies;  and promote smooth transitions across programs  for children from birth to kindergarten.
HEALTH INSURANCE COVERAGE   
* Enact  legislation, regulations, and other policies to ensure appropriate and equitable coverage  for autism spectrum disorders by  private  health  plans  and  insurers.
THE AUTISM SPECTRUM DISORDER PUBLIC HEALTH CRISIS   
* Implement  a  statewide  public  awareness  campaign on autism spectrum disorders linked  to innovative efforts by the Department  of  Public Health to improve access to and  navigation of programs and  services.
EDUCATION OF CHILDREN  WITH AUTISM SPECTRUM DISORDERS   
* Address the need to increase the number of teachers, paraprofessionals,  and other school-based personnel trained in education of  children with autism spectrum disorders.
RESOLUTION OF SERVICE DISPUTES   
* Empower families and local education agencies to collaborate in establishing appropriate and effective individualized education programs  for children with autism spectrum disorders. 
* Have  the state of California conduct a comprehensive and independent review of the process for resolving service disputes and  identify and promote effective dispute resolution  models.
NEEDS OF YOUTH AND ADULTS WITH AUTISM SPECTRUM DISORDERS
* Expand postsecondary educational opportunities and establish  new  and  effective career technical education models, including  intensive support. 
* Expand innovative community-based approaches to supported employment,  transportation, social-recreational  programs, and  housing.
AWARENESS OF AUTISM SPECTRUM DISORDERS IN EMERGENCY SITUATIONS   
* Provide training and information on autism spectrum disorders  to peace officers, first responders, allied judicial public agencies, and  emergency response systems.
 
 
Please: Contributions Urgently Needed!
Advocacy Without Borders 
Advocacy Without Borders: Connecting People With Disabilities, Mental Health Needs, Seniors, Traumatic Brain & other injuries, People with MS & other health needs, including People of color, different languages, cultures,  Families, Workers, Providers, & Organizations to Rights & Unified Action. This report - and the CDCAN townhalls, and other events and projects are for all of them and for promoting advocacy without borders toward unified action.  We are one community. 
To respond to this report reply to: Marty Omoto at martyomoto@rcip.com    CDCAN website: www.cdcan.us

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The CDCAN Townhall Telemeetings are partially funded by a small grant from the USC UCEDD, Grant #90DD0540 from the Administration on Developmental Disabilities. (note: the opinions expressed or content in these reports do not necessarily reflect the views or opinions of the USC UCEDD. 
THANK YOU AGAIN - STEP!
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,