National Council on Disability Quarterly Meeting
January 29-31, 2007
Town and Country Resort
San Diego, CA

MEMBERS                                                                  
John R. Vaughn, Chairperson              
Pat Pound, First Vice Chairperson
Glenn Anderson, Second Vice Chairperson
Milton Aponte, J.D.
Victoria Ray Carlson
Chad Colley
Robert Davila, Ph.D.
Barbara Gillcrist
Young Woo Kang, Ph.D.
Kathleen Martinez
Lisa Mattheiss
Anne M. Rader
Marco Rodriguez
Linda Wetters

ABSENT
Graham Hill

STAFF                                                                            
Mark S. Quigley, Acting Co-Executive Director                            
Martin S. Gould, Ed.D., Acting Co-Executive Director                         
Jeff T. Rosen, General Counsel (via teleconference)
Julie Carroll, Senior Attorney Advisor
Joan Durocher, Senior Attorney Advisor
Gerrie Hawkins, Ph.D., Senior Program Analyst (via teleconference)
Mark Seifarth, Congressional Liaison
Pamela O’Leary, Staff Interpreter (via teleconference)
Brenda Bratton, Executive Assistant (via teleconference)
Carla Nelson, Secretary           

GUESTS
Dinah Cohen, Director, Department of Defense, Computer/Electronic Accommodations Program
Tammy Duckworth, Director, Illinois Department of Veterans Affairs
Olegario D. Cantos, VII, Esq., Associate Director for Domestic Policy/White House
Michael McPherson, Protection and Advocacy, Inc., San Diego, CA
Sherman Gillums, Jr., National Service Officer, Cal-Diego Paralyzed Veterans of America Colonel John Folsom, Founder and Director, Wounded Warriors; Veteran, Nebraska
Evelyn Hamilton, Disabled Program Navigator, San Diego, CA
Carly Kaplan, Government and Unemployment and Disabilities, Sacramento, CA
Michael C. Collins, Exec.Dir., California State Independent Living Council, Sacramento, CA
Thomas Clark, GSA, Washington, DC (via teleconference)
Andrew Mudrick, Managing Attorney, Protection and Advocacy
Cyndi Jones, Director and Principal Investigator, The Center for an Accessible Society
Betty Bacon, San Diego Housing Ordinance
Susan Madison, Access to Independence, San Diego, CA
Louis Frick, Executive Director, Access to Independence, San Diego, CA
Barry Fox, MFT, Chief of Residential Services/Child Welfare Services/San Diego HHS
Evelyn Shuro, Global Partners United               
Patty Boles, Foster/Adoptive Parent; Executive Director of Straight From the Heart, Inc.
Vanessa Peters, San Diego School District
Debbie Davies, Team Leader for Forensic and Medical Services and Lead Forensic Interviewer for Chadwick Center
Betsy Brand, NCD Contractor – Director of the American Youth Policy Forum (AYPF)
Caroline Christodoulidis, NCD Contractor – Program Associate of AYPF
Terri Linehan, Program Diagnostic Resource Teacher in San Diego Unified School District
Jerry Hobbs, Teacher, Special Education/Special Day Class/Licensed Children’s Institutions- San Diego Unified Schools
Arthur Springer
Tammy Connell

CALL TO ORDER
Chairperson Vaughn called the meeting to order at 9:00 a.m.

ACCEPTANCE OF THE AGENDA
Motion 1
Mr. Aponte moved to accept the agenda as presented. Passed.

APPROVAL OF THE MINUTES
Motion 2
Dr. Anderson moved for approval of the minutes with the correction of 45,000 downloads to the NCD Web site as opposed to $45,000. Passed.

CHAIR’S WELCOME
Mr. Vaughn welcomed NCD members, staff and guests, and stated that first and second vice chairpersons Pat Pound and Dr. Glenn Anderson would first welcome public comments.

PUBLIC COMMENTS
Ms. Mary Lamielle, Executive Director, National Center for Environmental Health Strategies, recommended that NCD measure chemical and environmental sensitivity, and said there are many different populations with intolerance to chemicals. Secondly, she recommended NCD look at the Access Board projects and reports on indoor air quality, go to the meetings and comment on the actions applicable to NCD. She suggested NCD meet with a chemical and environmental sensitivity expert and conduct a workshop for staff and board.

DINAH COHEN, DIRECTOR, DEPARTMENT OF DEFENSE, COMPUTER/ELECTRONIC ACCOMMODATIONS PROGRAM PRESENTATION (CAP)
Ms. Cohen stated that NCD presently is in a perfect position to introduce technology to a wider audience. She looks to NCD to be a new champion of CAP. She challenges folks to do the best they can for young people with disabilities, and co-workers who become disabled, and to embrace the wounded service members and welcome back our armed forces members.

TAMMY DUCKWORTH, DIRECTOR, ILLINOIS DEPARTMENT OF VETERANS AFFAIRS PRESENTATION
Ms. Duckworth stated that the military wounded need to be recruited, federal and state policy need to change and we should fight for more funding. There is an opportunity with this group of war amputees, with the change of politics, to get new laws passed. She suggested we reach out to and join forces with Disabled American Veterans, Paralyzed Veterans of America, and AMVETS who conducted a national conference on the needs of young war wounded. Helping the military disabled community will help the larger community.

VETERANS’ PANEL PRESENTATION AND DISCUSSION                
Various veterans from the San Diego area submitted their personal stories to NCD and the general public.

OLEGARIO D. CANTOS, VII, ASSOCIATE DIRECTOR FOR DOMESTIC POLICY
Mr. Cantos stated that he was extremely grateful for the invitation to participate in the NCD meeting, and that he has had a strong relationship with the agency long before his employment at the White House. He said the NCD staff is amazing and dedicated.

Mr. Cantos said he uses NCD’s recommendations to the President and Congress as a check list. He values the input from NCD and forwards it to individuals of the Domestic Policy Council.

Mr. Cantos stated that a significant portion of his job is bringing people together from the different silos across government and from the nonprofit and for-profit sectors - to create a kind of synergy.

Mr. Cantos stated that under this President there has been a 42 percent increase in federal spending for students in special education-an increase of $2.7 billion. The Administration also has worked to advance the principles of the Elementary and Secondary Education Act to ensure there are standards and accountability, and that special education teachers receive the appropriate development and support they need.

He stated that the President will be releasing the New Freedom Initiative Progress Report. It will be the most comprehensive single central document highlighting the accomplishments of the Administration on the advancement and equality of people with disabilities.

Mr. Cantos stated that the Administration has supported and built the Youth to Work Coalition, a partnership between government and private nonprofit sectors, to bring together entities interested in providing internship opportunities for students with disabilities, and centralizing that information.

Mr. Cantos stated that NCD should be commended for its emerging work on the criminal justice front. NCD is working with the National Center for Victims of Crime, the nation’s leading resource and advocacy organization dedicated to helping victims of crime rebuild their lives.

VETERANS’ PANEL FOLLOW-UP DISCUSSION
Mr. Colley stated that there are 24 million veterans, 11 percent of whom have disabilities.
He gave an overview of the benefits/lack of benefits available to veterans with disabilities and the procedures followed by Veterans Affairs. 

ADJOURNMENT
Mr. Vaughn adjourned the NCD meeting at 3:00 p.m. for a closed executive session.

TUESDAY, JANUARY 30, 2007
Mr. Vaughn reconvened the NCD meeting at 9:00 am.

PUBLIC COMMENTS
NCD engaged in public comments from the audience and from those who participated via telephone.

CO-ACTING EXECUTIVE DIRECTORS’ REPORT
Mr. Quigley stated that the next NCD meeting will be April 16-17, 2007 in Atlanta and July 24-26, 2007 in Chicago, where we will be joined by former NCD chairperson Marca Bristo. The ADA’s 17th anniversary will be celebrated on Navy Pier with the mayor of Chicago in attendance. A location for the fall meeting has not yet been decided on, but the possible cities are Baltimore, Boston, or Philadelphia.

Mr. Quigley stated that GSA is helping NCD locate new office space due to next year’s $94,000 rent increase. The move would save NCD a considerable amount of money.

Mr. Quigley stated that the current tenants at one possible office location will be leaving furniture and other items that could be of use to NCD. He added that we will be looking at upgrading the office computer system as well.

Dr. Gould mentioned the work plan 2007 research project, Homeland Security activities and the Global Initiative for Inclusive Communications Technologies.

Dr. Gould stated that the work plan is enclosed in NCD members’ meeting materials. It outlines the operations and structure that support the strategic priorities NCD has set.

Dr. Gould said that Congress has agreed to fund us for additional projects in 2007- state of health for people with disabilities and the outcome and effects.

Dr. Gould elaborated on the activities that occurred and meetings attended by the Chairperson, members and staff over the past quarter.

Legislative Update
Mr. Seifarth stated that the upcoming activities in the 110th Congress may include the Americans with Disabilities Act, and possible issues on restoration legislation. Pursuant to its statute, NCD will be looking at the impact of the ADA, and will be reviewing and evaluating the impact.

Mr. Seifarth stated that other issues on Congress’ agenda are the following:

• reauthorization of the Workforce Investment Act
• issues with mental health parity and reauthorization of Substance Abuse and Mental Health Act
• reauthorization of the No Child Left Behind Act
• reauthorization of the Higher Education Act
• discussion of the minimum wage increase
• reauthorization of the Developmental Disabilities Act – referenced in NCD’s statute
• Veterans’ issues – some legislators would like to use possible savings from eliminating earmarks in the appropriations bills to provide additional services to veterans

Ms. Pound thanked Mr. Seifarth for the legislative briefings he arranged to have by teleconference and said they are very beneficial.

EXECUTIVE COMMITTEE REPORT
Ms. Pound stated that NCD has approved the Telecommunications and Emerging Technology papers. Also, approval has been granted for editing and releasing the ADA Implementation report and the two reports that NCD will be working on this year, vocational rehabilitation and health care.

FINANCE COMMITTEE REPORT
Mr. Colley thanked Mr. Vaughn for the opportunity to chair the Finance Committee and asked that Ms. Wetters assist in delivering the report.

Ms. Wetters thanked Thomas H. Clark at the Financial Liaison Division of GSA for his assistance in helping to prepare for this report. NCD is in excellent shape at this time. The audit did not produce any findings of significance and NCD is continuing to release important research documents and represent disability policy. We returned $110,000 to the general fund of the US Government last year, but we are taking steps so we don’t encounter that situation again.

Ms. Wetters explained the budget process by fiscal year. She added that NCD and other federal agencies are under a continuing resolution (CR), meaning the agency has to operate on a percentage of its last fiscal year’s budget.

Ms. Wetters stated that RFPs have been done for the VR and health care projects. The question is whether NCD wants to stay with the current scope of work or reevaluate.

Ms. Wetters stated that the Finance Committee cleared the issue of long term obligations under the CR. Except for one area we can accept quarterly or monthly purchases. We only had to change one obligation - the post office. She stated that staff was to submit a budget that covered their expenditures, including contracts and program issues under the CR. Staff provided information on the expenditures.

Ms. Wetters stated that the report release committee was asked to look at the timing and cost of report releases, such as the upcoming employment report.

Ms. Wetters said the Finance committee was asked to look at current practices and staff travel, processes and budget requests and develop fiscal reports that better advise us. It was determined that there isn’t a need to change the purchasing process. At this point, GSA standards are more than appropriate in reviewing expenditures. She added that Mr. Colley has worked with GSA in developing three significant new reports.

Ms. Wetters concluded by stating that NCD should be cautious about its FY 07 budget under the CR and keep in mind that in FY 08 there is a federal employee salary increase. The rent issue will be in NCD’s favor for we hope to have a significant decrease. She spoke about the programs, activities and costs of NCD’s programs and projects for the following fiscal year.

Motion 3
Ms. Wetters recommended acceptance of the memorandum of understanding of $5,000 a month for GSA services. Passed

Dr. Gould stated that the work of GSA involves billing, purchasing, and requisition work, and the ongoing and additional work the Finance Committee has requested of staff in the development of their understanding of how NCD’s budget and money flows. Junior members working with Mr. Clark are responsible for assignments from the Finance Committee, for developing travel reports and interim documents, and for providing services and supports that previously were not available at this level of quality or within these time frames.

TEAM AND ADVISORY COMMITTEE REPORTS
ADA

Dr. Davila stated that the Implementation and Impact reports are undergoing final editing and will be released soon. The team feels the reports should be released at the same time on the Hill, at the National Press Club or at NCD’s office. The Hill is preferable because we would like to recruit Congressional staff and other members of Congress to attend.

Dr. Davila stated that NCD has been contacted by the Disability Business Technical Assistance Center Network (DBTAC) regarding their 90-minute audio conference May 15, 2007.

Motion 4
Dr. Davila moved that NCD release the Impact and Implementation reports together and that NCD select the Hill as the location for the release. Passed.

Motion 5
Dr. Davila moved that NCD participate in the DBTAC teleconference and that Ms. Carroll speak on behalf of NCD and its Implementation report. Passed.

EMPLOYMENT
Ms. Wetters stated that the employment report is in its final drafting stages.Ms. Durocher has received a rough draft. There has been positive feedback from stakeholders, individuals with disabilities and agencies on the issues addressed in the report. We look for action to be taken up at the next NCD meeting.

FINANCIAL INCENTIVES
Mr. Rodriguez reported that the financial incentives study has five components and four are completed. The purpose of the study is to find innovative ways to help employers hire people with disabilities and to increase the numbers of people with disabilities who are employed. The contractor has reviewed and summarized the literature and provided information on direct and indirect financial incentives that advance socioeconomic possibilities for people with disabilities. The time line for deliverables is approximately 60 days - by the April meeting.

Mr. Rodriguez requested additional members of NCD to be part of the team.

PROGRESS REPORT
Dr. Anderson stated that NCD is mandated to have an annual progress report. NCD’s 2006 report covers the period January to December 2006. Rough drafts have been received by Mr. Rosen. Team members should be receiving a revised draft for their review and comments. The time line for completion of this report is May 2007.

EDUCATIONAL OUTCOMES
Ms. Pound stated that this report is on schedule. The contractor has nearly completed interviewing ten different states on how they are doing with the implementation of No Child Left Behind. She stated that the team would like to see more members and participants. The contractors are beginning to interview other stakeholders and then will begin writing a comprehensive study of everything they have learned during the process.

Dr. Gould stated that the challenge is to get the research, and get policy makers and funders to appreciate where states and localities are and try to learn at the national level to make sense of and to work with state and local school systems and data systems.

DISABILITY DATA AND STATISTICS
Dr. Anderson stated that there are two purposes for the study:

• to review, examine and evaluate federal data collected and measure the progress of people with disabilities
• to identify which data is important to collect and use with national indicator systems

Dr. Anderson stated that the contractors have already conducted six focus groups in the DC area, with diverse representation of consumers with disabilities and advocates and service providers.

HEALTH CARE
Ms. Rader stated that she and Ms. Carroll will talk about their major health care project and look at its scope and budget. The topic of health care will continue in tomorrow’s NCD meeting.

YOUTH ADVISORY COMMITTEE (YAC)
Mr. Rodriguez talked about YAC’s ongoing work. YAC has two products for future presentation to NCD. YAC members had an opportunity to serve on national level planning initiatives with federal agencies seeking youth perspectives. Dr. Hawkins added that YAC invites NCD members to join their teleconferences.

Mr. Phillips, YAC member and NCD intern, expressed his gratitude to NCD for his experience as an NCD intern. He said he was able to learn a good deal about disability policy from other youth and leaders in the disability community.

CULTURAL DIVERSITY ADVISORY COMMITTEE (CDAC)
Mr. Aponte stated that the charter of this committee has been extended for 2 years. The committee provides recommendations to NCD on cultural diversity and disability matters.

Mr. Aponte stated that the following were among CDAC’s activities this quarter:

• reassessment of 2007 fiscal plans and goals
• preparation of near future recommendations for NCD to consider,  such as health care, mental health, accessibility, housing, criminal justice and employment

Dr. Hawkins indicated that the next CDAC teleconference is scheduled for February 16, 2007. NCD members are invited and encouraged to participate in the teleconferences.

Mr. Aponte added that CDAC recommends NCD send a letter to selected members of Congress as a follow-up to the report entitled People with Disabilities on Tribal Lands. The report made recommendations, but no action has been taken on them.

LIVABLE COMMUNITIES PANEL PRESENTATION
Ms. Carlson introduced and moderated the panel of experts in the area of livable communities. Panel participants included: Andrew Mudrick, Managing Attorney, Protection and Advocacy; Cyndi Jones, Director, Accessible Site Society; Betty Bacon, San Diego Housing Ordinance; Michael Collins, Executive Director, California State Independent Living Council; Louis Frick, Director, Access to Independence.

ADJOURNMENT
Mr. Vaughn adjourned the meeting at 4:00 pm.

NCD RECEPTION
Mr. Quigley asked that NCD members proceed to the reception.

WEDNESDAY, JANUARY 31, 2007
Mr. Vaughn reconvened the meeting at 9:00 a.m.

PUBLIC COMMENTS
NCD engaged in public comments from the audience and from those who participated via telephone.

Ms. Evelyn Shuro recommended to NCD a resource person on veterans’ issues, and will provide contact information. She also urged NCD to think about the issue of qualified personnel working with school-aged children and toddlers, and vocational rehabilitation.

FOSTER CARE PANEL PRESENTATION
(See Attachment A)

CONTINUING BUSINESS SESSION
Mr. Seifarth stated that he has drafted two Congressional letters for the Chair’s signature, and listing full Council: a welcoming letter to new Members of Congress to be hand delivered for personal introduction and a letter to all Members of Congress that describes the functions and goals of NCD, as well as recent and current NCD projects and reports.

INTERNATIONAL WATCH
Ms. Martinez stated that there are a number of Federal Government agencies that do international work, including the Departments of Education, HHS, Labor, and Defense, but NCD is charged to be the official liaison to the State Department on international disability issues.

In 2000, under the leadership of Marca Bristo, NCD established the IW advisory committee to bring together individuals from the areas of international development and foreign assistance to advise NCD on how to approach various international issues.

Ms. Martinez stated that the UN Convention likely will be ratified and will benefit people with disabilities in the US and worldwide. A number of Ad Hoc Committee meetings have been held over the past six years - people with disabilities world-wide basically wrote the Convention. The draft language was approved by the Ad Hoc Committee in 2006 and the Convention will be open for signature in March 2007.

Ms. Martinez stated that NCD supports the Convention and agreed in 2004 to support the position of having our government ratify and sign the Convention. NCD was very active with the State Department during the process of developing text language. The State Department has been active in providing technical assistance throughout the Convention process and has included people with disabilities on its delegation, but it looks like the Administration does not plan to sign or ratify the Convention. She added that NCD has agreed to take the position that the US sign and ratify the convention. If NCD maintains this position, we will be looked to as one of the experts when time comes for ratification. At that time many countries will sign, and look to NCD for answers on how to develop and implement policies and legislation in their country.

Ms. Martinez stated that NCD has done an incredible amount to support the passage of the Convention, including providing educational sessions for delegates, participants, and people with disabilities, and developing a number of topic papers.

Ms. Durocher stated that in 2002 NCD produced a White Paper: Understanding the Role of an International Convention on the Human Rights of People with Disabilities that explained and defined the process for ratifying the Convention. NCD has done numerous updates and has participated in several of the Ad Hoc Committee meetings by holding topical side events – all of which is included in the Decision Memo that Ms. Durocher drafted.

Ms. Martinez added that the reason the US is not planning to sign this Convention has little to do with disability or this specific Convention, but very much to do with the US approach to UN treaties in general and what it means to ratify a Convention. In fact, there are a number of conventions that the US has not ratified, such as the Convention on the Elimination of Discrimination Against Women, and the Convention on the Rights of the Child. She added that Mr. Steven Hill of the State Department has pushed for the Department to take positions during the entire Ad Hoc process.

Ms. Pound stated that NCD is looked at very favorably by the disability community for its work on the Convention. The disability community is looking to NCD to play a leadership role. Ms. Pound added that she does not see a reason to change NCD’s position. Chairman Vaughn clarified that this means urging the Administration to sign and ratify it.

Ms. Durocher clarified that there is only a small window of opportunity for NCD to go with Option 2 from the Decision Memo – urging the Administration to sign (but not ratify) the Convention. If a country signs at the end of March when the Convention is open for signature, it preserves its ability to ratify at a later date. If a country does not sign at that point, its only option is to both sign and ratify at a later date.

Motion 6
Ms. Pound moved to table the discussion until a later time on the position NCD will take on the signing and ratification of the UN Convention. Passed.

UNFINISHED BUSINESS
None at this time.

NEW BUSINESS
NCD discussed the possibility of having its fall quarterly board meeting in Boston in October 2007.

Motion 7
Mr. Vaughn moved to amend the motion to meet in Boston the third or fourth week in September. Passed.

Motion 8
Mr. Aponte moved that the Executive Committee examine the options for future new office space for NCD and use consultants with members in the process. Passed. 

Mr. Vaughn stated that we are operating under an approved FY 07 budget that was reduced to $2.7 million from the original $3.14 million. Under the CR we are operating and getting reimbursed as if the budget were $3.14 million. He stated that a motion was needed to put roughly $400,000 back into the budget.

Mr. Vaughn thought this money would allow for more member travel to visit independent living centers in their state and see what their issues are, and visit rehabilitation advisory councils for the VR programs in their states. He thinks this type of outreach is needed. He stated that this money also could be used for homeland security issues.

Mr. Aponte recommended that NCD consider funding projects to deal with new issues we have been advised of.

Motion 9
Ms. Wetters moved that the difference garnered from the new pass back from OMB for fiscal year 08 budget be split equally between accounts that cover member time and travel and Homeland Security. Passed.    

Motion 10
Mr. Vaughn moved that half of the additional $372,000 would be made available for NCD member travel, reimbursements, and possible fifth meeting and the other half for Homeland Security. Passed.

Mr. Aponte suggested that there should be a coordinating effort to minimize travel issues.

Ms. Wetters stated that Thomas Clark of GSA said that NCD members are allowed to schedule their own travel, but it must be at the government rate.

Mr. Vaughn suggested that NCD meet more oftenso there is an opportunity to do more things. He suggested shorter teleconference meetings.

Mr. Aponte supported the idea of more days for NCD meetings and lengthy teleconferences.

NCD members engaged in dialogue about the cities for the upcoming quarterly meetings as well as expressed their views on the structure of panels and suggested ideas.

Ms. Pound suggested a summary of the information from panelists be provided to Members, although the CART transcription also is very helpful.

Ms. Wetters asked if there would be time set aside on the agenda at the Atlanta quarterly meeting to discuss employment issues, dialogue about the Business Advisory Council and how to tie the employment report to some of the social security recommendations. She suggested having an employment panel. There is a regional EEOC office in Atlanta from which perhaps NCD could get an update on employment and disability issues.

NCD members suggested a list of agenda items to be included in the Atlanta quarterly meeting.

Mr. Aponte raised a question of whether NCD may consider additional collaboration with a number of federal agencies if NCD members are able to represent this agency in that regard.

Ms. Wetters said that NCD indicated that the employment study team would revisit some of its information in light of concerns that were brought to NCD’s attention. This would be done before the report is released.

Mr. Aponte mentioned revisiting the concept of public hearings and how NCD might consider implementation.

ANNOUNCEMENTS
None at this time.

ADJOURNMENT
The meeting adjourned at 4:30 p.m.

Attachment A

Contact Information: Panel Speakers
Youth in Foster Care with Disabilities Panel Discussion
January 31, 2007

Patty Boles, Foster/Adoptive Parent and Executive Director

Straight From the Heart, Inc.
839 W. San Marcos Blvd.
San Marcos, CA 92078
(760) 744-2240
pattyboles@cox.net
sftheart@sbcglobal.net
www.straightfromtheheartinc.com

Patty Boles has fostered over 100 medically fragile and developmentally delayed infants over the past 27 years. She and her husband have adopted 8 children and hope to adopt their 9th child this year. Patty is the Director of Straight From the Heart, Resource Center, which is dedicated to the support of foster children and their caregivers. Foster parents receive help in all areas of fostering including working within the system, location of resources, advocacy and mentoring, grief and loss support and free training at our Training Center.

Judy Steet Borchert, Associate Chief of Case Management Services

San Diego Regional Center
4355 Ruffin Rd.
San Diego, CA 92123
(858) 496-4352
jborchert@sdrc.org
www.sdrc.org

Judy Steet Borchert is the Associate Chief of Case Management Services at the San Diego Regional Center, which serves as one of 21 regional centers in California through which a person with a developmental disability and his or her family can obtain services and be linked to other community resources within San Diego and Imperial counties. It is the philosophy of this regional center that each consumer shall be provided with the maximum opportunity to participate in every day living experiences that promote development to the highest potential and full participation in the community.

Debbie Davies, Team Leader, Forensic and Medical Services; Lead Forensic Interviewer

Chadwick Center for Children and Families
Rady Children’s Hospital – San Diego
3020 Children's Way, MC 5016
San Diego, CA 92123
(858) 966-5814
Fax: (858) 966-8535
ddavies@chsd.org
www.chadwickcenter.org

Debbie Davies is a Team Leader for Forensic and Medical Services, as well as a Lead Forensic Interviewer at the Chadwick Center for Children and Families. She works with children and youth who are victims of abuse. The Chadwick Center promotes the health and well-being of abused and traumatized children and their families through evaluation, treatment, prevention, education, advocacy, and research.

Richard A. Devylder, Deputy Director

Independent Living and External Affairs
California Department of Rehabilitation
(916) 263-8699; TTY: (916) 263-7477
Fax: (916) 263-7474
rdevylde@dor.ca.gov
http://www.dor.ca.gov/

Richard Devylder was born in 1969 without arms or legs. His journey in life has been full of challenges, opportunities, and blessings. Richard’s life has grown from being viewed early on as a curse or punishment to the present where he now has a life full of blessings and successes. Richard is a Deputy Director at the California Department of Rehabilitation where he is responsible for the Independent Living/Assistive Technology Section, External Affairs, Emergency Response and Recovery, and the Disability Access Section.

Barry Fox, MFT, Chief, Residential Services
County of San Diego Health and Human Services Agency:

Child Welfare Services
1700 Pacific Highway, Rm. 320
San Diego, CA 92101
(619) 767-5420
Fax (619) 767-5419
Barry.Fox@sdcounty.ca.gov
www.sdcounty.ca.gov

Barry Fox is the Chief of Residential Services in the Child Welfare Services section of the San Diego Health and Human Services Agency. Residential Services provides services to dependent children with severe emotional problems, their siblings, and parents/guardians and/or caretakers. Children who are unable to be maintained in their own home or in a County licensed foster home are referred to the Residential Services Section for placement in a higher level of care: a Foster Family Agency certified foster home or a licensed group home. Approximately 900 children are assigned to this section.

Jerry Hobbs, Teacher, Special Education

Special Day Class
Licensed Children's Institutions
San Diego Unified Schools
4100 Normal Street
San Diego, CA 92103 
Cell: (619) 405-2429
jhobbs@sandi.net
jerrylhobbs@aol.com
www.sandi.net

Jerry Hobbs entered the California foster care system at the age of eight and “aged-out” of the system on his 18th birthday. At the age of 11, after experiencing eight residential placements, Jerry found permanence and educational stability through loving foster parents. Because he received generous financial support and scholarships upon high school graduation, Jerry was able to complete a B.S. degree by age 21. After a successful 25 year career as a corporate executive (i.e. Executive V.P., President), Jerry began a second career by studying at the Beach Center on Disability at the University of Kansas. Jerry is now a special education teacher in the San Diego Unified (City) Schools, as well as an advocate, for children with disabilities who are in the foster care system.

Terri Linehan, Program Diagnostic Resource Teacher

Secondary ILS, PACE
San Diego Unified School District
Wangenheim Center Gold Coast Dr.; B-25
San Diego, CA 92126-3725
(619) 204-3519
Fax: (858) 693-5506
tlinehan@sandi.net
www.sandi.net

Terri Linehan is a Program Diagnostic Resource Teacher in the San Diego Unified School District. She works with high school youth with developmental disabilities, some of whom include foster youth.

Michelle Lustig, Coordinator

San Diego County Office of Education, Foster Youth Services
6401 Linda Vista Road
San Diego, CA 92111
(858) 503-2628
mlustig@sdcoe.net
www.sdcoe.k12.ca.us/student/ss/fys.asp

Michelle Lustig, MSW, ACSW has worked in public and child welfare since 1985. In 2005 Michelle became the Coordinator of the Foster Youth Services Program at the San Diego County Office of Education. She is nearing completion of a doctorate degree in Educational Leadership and prides herself on building bridges between the worlds of public education and child welfare.

Marilyn Stewart, Director

YES Transition Network
ACCESS, Inc.
2612 Daniel Avenue
San Diego, CA 92111
(858) 560-0871, ext. 112
Fax: (858) 560-8135
mstewart@access2jobs.org
http://www.access2jobs.org/

Marilyn Stewart has worked in child welfare, foster youth services, and employment services in the San Diego community for over 30 years. For the past six years, she has worked as the Director of the YES Transition Network. This is a continuum of services designed to prepare and support transition-age foster/former foster and other at-risk youth to prepare for self-sufficiency and a successful adulthood.

Federal Funding for Youth in Foster Care with Disabilities

Major federal programs that support foster youth and/or youth with disabilities:

• Title IV-E of the Social Security Act: Established in 1980 as a response to the need for more federal support for foster care and adoption assistance programs, Title IV-E pays a portion of States’ costs to provide care for children removed from welfare-eligible homes because of maltreatment. States are subject to match requirements based on their Medicaid matching rates. Title IV-E also provides open-ended, entitlement funds to assist states in finding adoptive homes for eligible children with special needs. States have discretion to define “special needs” eligibility criteria—which could include age, disability, or membership in a sibling group. As an open-ended entitlement, adoption assistance funds are not subject to appropriations. Funds for foster care programs total approximately $5 billion per year. Additionally, $1.8 billion is spent on the Title IV-E adoption assistance program.
• Title IV-B, Subpart 1 of the Social Security Act authorizes grants to states to provide broadly-defined supportive services that could prevent the need for out-of-home placement. States are required to contribute a 25 percent match. Funds are distributed to states through a formula based on population under 21 and their per capita income. There are no federal income eligibility requirements for this program. In FY 2005, the federal government provided $289 million for this program.
• Title IV-B, Subpart 2 of the Social Security Act (Promoting Safe and Stable Families) was established in 1981 and provides capped entitlement funding to states each year for four kinds of services: family preservation, family support, time-limited family reunification, and adoption promotion and support. States are required to contribute a 25 percent match. Funds are allocated to states according to their relative share of children receiving food stamps. There are no federal income eligibility requirements for this program. In FY 2005, the federal government provided $403 million for this program.
• The Adoption and Safe Families Act of 1997 established time lines and conditions for filing termination of parental rights as a response to complaints that these procedures took too long and further endangered the child. The Act provides a new legislative framework that sets the direction and parameters for the operation of state and local child welfare agencies and courts. Goals are to: promote permanency for children in foster care; ensure safety for abused and neglected children; accelerate permanent placements of children; and increase accountability of the child welfare system.
• The Developmental Disabilities Assistance and Bill of Rights Act of 2000 requires the Administration on Developmental Disabilities (at the US Department of Health and Human Services) to ensure that people with developmental disabilities and their families receive the services and supports they need and participate in the planning and design of those services. The eight areas of emphasis mandated for the programs funded under the DD Act include activities related to: quality assurance, education and early intervention, child care, health, employment, housing, transportation, recreation, as well as other services available to individuals in a community, including community supports.

Major federal programs that support foster youth and/or youth with disabilities in certain key areas:

Education

• Individuals with Disabilities Education Act (IDEA): IDEA guarantees youth with disabilities the right to a free appropriate public education in the least restrictive environment and authorizes appropriations of billions of dollars in funding to states and school districts to assist them in providing special education and related services. Youth are eligible for special education services up to age 18 or through age 21 at the discretion of the state.

• Education for Homeless Children and Youth: This program was established to ensure that homeless children and youth (including youth awaiting foster care placement) have equal access to the same free and appropriate education as other children by providing activities for and services to ensure that these children and youth enroll in, attend, and achieve success in school. Funds may be used for a wide variety of activities that will facilitate the educational success of homeless children and youth, including tutoring, summer enrichment programs, the provision of school supplies, and professional development designed to heighten educators' understanding of and sensitivity to the needs of homeless children and youth. Approximately $62 million in FY05.

Health

• Medicaid (Title XIX of SSA) provides health care coverage to 52.4 million people. Medicaid provides coverage for children and their parents, the elderly, and people with disabilities, including roughly 8.4 million people with severe disabilities. Individuals must have low incomes, have few assets, and meet immigration and residency requirements. All foster children for whom states receive federal reimbursement for foster care expenses (under title IV-E of the Social Security Act) are eligible for Medicaid. States have the option to extend Medicaid benefits to non-IV-E eligible foster children, and all states do. In addition, children receiving federally reimbursed adoption subsidies are eligible for Medicaid, and almost all states cover them. Thus, virtually all children in foster care and in adoptive placements are eligible for Medicaid.

Mental Health

• Mental Health Services Act (MHSA): Enacted in November 2004, MHSA provides funding for the expansion of mental health services for adults, children, and youth. Overall, MHSA is used to provide: services for children, adults and seniors with severe mental illness; innovative programs; prevention and early intervention programs; education and training programs; and capital facilities and technology.

Workforce

• Workforce Investment Act (WIA): WIA, enacted in 1998, is the cornerstone of the publicly funded workforce development system and provides workforce investment services and activities through local One-Stop Career Centers. The One-Stop delivery system provides a full menu of job training, education, and employment services at a single location where adults, veterans, dislocated workers, and youth may receive skills assessment services, information on employment and training opportunities, unemployment services, job search and placement assistance, and up-to-date information on job vacancies.

• WIA, Title I Youth Programs: Youth with disabilities most typically receive services under this portion of WIA. Youth services are available for both in-school and out-of-school youth, ages 14 to 21. Eligibility is based on being low income and one or more of the following: deficient in basic literacy skills; a high school dropout; homeless; a runaway or a foster child; pregnant or a parent; an offender; or an individual who requires additional assistance to complete an educational program, or to secure and hold employment.

• Carl D. Perkins Career and Technical Education Improvement Act: Funds available under Perkins can be used for a broad range of programs, services, and activities designed to improve career and technical education programs, and ensure access to students who are members of special populations. These include: a) individuals with disabilities; b) individuals from economically disadvantaged families, including foster children; c) individuals preparing for non-traditional fields; d) single parents, including single pregnant women; e) displaced homemakers; and f) individuals with limited English proficiency. Career and technical education programs funded under Perkins are available to assist individuals in 8th through 12th grades and in postsecondary schools, particularly community college students.

Child Welfare

• Temporary Assistance to Needy Families provides financial assistance and supportive services to needy families. States decide what categories of needy families to help, as well as penalties and rewards, asset limits, and benefit levels. States use funds not allocated for cash assistance to fund a variety of work supports, including school-age care, education and job training, transportation, housing and wage supplements. Some of this funding goes to services for foster youth.

• The Child Abuse Prevention and Treatment Act (CAPTA) funds States and grantees by providing funds and technical assistance for prevention and intervention; supporting research, service improvement programs, and demonstration projects; collecting data about the problem, its consequences, and the effectiveness of prevention and treatment services; facilitating information dissemination and exchange; and supporting policy development and professional education. Community-based Family Resource and Support Grants fund statewide networks of local child abuse and neglect prevention and family resource programs. Funding was $26.9 million in FY 2006.

Juvenile Justice

• Protection and Advocacy Systems (P&A): Designed to provide legal assistance and advocacy on behalf of persons with disabilities, P&A programs render a variety of services, including information and referral, training and education, negotiations, legal services, investigation, and monitoring. The P&A System for Persons with Developmental Disabilities (PADD) protects and advocates the rights of individuals with developmental disabilities; the P&A System for Individuals with Mental Illness (PAIMI) is for those with mental disorders; and the P&A System for Individual Rights (PAIR) was created as a catchall program for individuals with severe or other disabilities who are not eligible for services under either PADD or PAIMI.

Placement

• The Indian Child Welfare Act (1973): This Act strengthened the role of tribal governments in determining the custody of Native American children and specified that preference should be given first to placements with extended family, then to Native American foster homes.

Transitions to Adulthood

• The Chafee Foster Care Independence Program offers assistance to help current and former foster care youths achieve self-sufficiency. Grants are offered to States who submit a plan to assist youth in a wide variety of areas designed to support a successful transition to adulthood. Activities and programs include, but are not limited to, help with education, employment, financial management, housing, emotional support and assured connections to caring adults for older youth in foster care as well as youth 18-21 who have aged out of the foster care system. The funding level for 2006 is $140 million.

• The Educational and Training Vouchers Program (ETV) for Youths Aging out of Foster Care was added to the Chafee Program in 2002. ETV provides resources specifically to meet the education and training needs of youth aging out of foster care. In addition to the existing authorization of $140 million for the Chafee Program, the law authorizes $60 million for payments to States for post secondary educational and training vouchers for youth likely to experience difficulty as they transition to adulthood after the age of 18. This program makes available vouchers of up to $5,000 per year per youth for post secondary education and training for eligible youth. 

National Council on Disability Executive Board Meeting
Youth in Foster Care with Disabilities Panel Presentation
January 31, 2007

Attachment B

January 30, 2007
San Diego, California

National Council on Disability
Washington, DC

Testimony of Michael C. Collins, Executive Director
California State Independent Living Council                      

Dear Chairman Vaughn and Fellow Council Members:

On behalf of the California community of people with disabilities, and the State Independent Living Council, welcome back to California and the “birthplace” of independent living. We appreciate the opportunity to attend your meetings in person, and to share information which we feel will be useful to you as you develop policy recommendations for the President, Congress and the disability funders in federal government and private enterprise.

Much of what you will hear from me is personal testimony based on my ten years of experience as Executive Director of the California State Independent Living Council. Our agency, commonly known as the SILC, is the only independent state agency of its kind in the country. We’re proud of our history during the past decade, and enjoy a positive and productive relationship with federal and state agencies, as well as a partnership with the members of one of the strongest networks of disability advocacy organizations in the nation.

Since some of your members are from California, and many of our activities end up on national email lists, I won’t take the time to go too deeply into any of the subjects I’d like to address today. We feel fortunate to live in a state that has so many opportunities for employment, quality living environments (and climates), and the opportunity to follow a strong legacy of disability leaders who were largely responsible for creating many of the federal and state laws that provide us with disability rights and services today. Many of those leaders have been members of your council, and are still affiliated through partnerships at the state and federal level.

Having great weather does not make a state livable. The disability community in California faces some challenges that are steeper than those faced in smaller or more rural states. Our housing costs have soared to the point where even two-person working families find it difficult to afford even a modest home. I’m not sure what the figure stands at today, but our median home price recently stood at $550 thousand for a modest 3-bedroom, 2-bath home. In the face of those extraordinary costs, we continue to witness the reduction in the availability of accessible subsidized housing, and are not looking forward to the impact of further cuts that were recently announced for the HUD budget. Because we have relatively good weather, many people can survive on our streets while homeless, and in recognizing this fact the citizens recently passed Proposition 63 which puts millions of dollars into the mental health services system in order to help end homelessness.

California’s Title 24 building codes preceded the Americans with Disabilities Act (ADA), yet both laws are being challenged on a daily basis in courts across the state. You have undoubtedly read negative publicity generated by the media and the business community regarding “drive by” ADA lawsuits. The amazing thing about those stories is that, in virtually all cases, the plaintiff with a disability identified real violations of the laws and the cases were seldom thrown out of court for that reason. Requiring the disability community to resort to the justice system to gain enforcement of our basic civil rights is destined to create even more problems in the future. Today, as you are meeting in San Diego, dozens of committed advocates are at the State Building Standards Commission meeting in Sacramento advocating to retain the accessibility features in our existing regulations, and seeking to make improvements in areas where it is felt that our code might still be deficient.

Access to quality health care is one of the major factors that infringes upon the quality of life of people with disabilities, no matter where they live. In California, our disability community and state agencies have worked together for years to create Medicaid-funded services that are available in the community, such as In-Home Supportive Services. Governor Schwarzenegger has recently released his health care reform proposal which seeks to solve the problem of medically uninsured individuals in this state who are putting themselves at risk, and who thus jeopardize the financial stability of the medical provider network. While many of the Governor’s recommendations have not been fully evaluated by disability advocates yet, the SILC is looking forward to hearing a presentation about them by a high-ranking member of his administration at our meeting next month in Long Beach. Something needs to change.

Many California organizations, such as the World Institute on Disability (WID), continue to play a leadership role in our nations’ efforts to reduce the abysmal unemployment rate for people with disabilities. Bryon McDonald and his colleagues at the California Working Group were behind the Ticket to Work and Work Incentives Improvement Act (TWWIIA), have helped our state adopt the 250% working disabled program, and lead the way to get legislation passed that allows for personal care services funded by Medicaid to be provided in the workplace. WID also houses the respected Proyecto Visión project that is directed by your own Kathy Martinez.

In order to be successful, it is important that the disability community work together toward long term change. Our California Foundation for Independent Living Centers, which is the trade association for most of the 29 centers for independent living in our state, houses a “systems change network” that is funded by a partnership between the SILC and the Department of Rehabilitation. That project coordinates the activities of 29 systems change advocates based in every independent living center in the state, along with their teams of volunteers that coordinate letter writing campaigns, fax campaigns, and can assemble a broad range of people with disabilities to work toward common causes at the Capitol or wherever else they are needed.

Several years ago we co-founded what has now become the Respectability Coalition. The idea for this disability rights alliance originated as a consumer caucus to be funded by the SILC, but we quickly joined with the Western Law Center for Disability Rights (now the Disability Rights Legal Center) and Protection & Advocacy, Inc to host a biennial conference. A simple Disability Civil Rights Day has evolved into a year-round series of meetings and a conference that brings over 300 people with disabilities from 65 different organizations in the state together to develop common priorities and action plans to achieve them.

Despite all these successes there are major improvements needed in regard to almost every disability advocacy issue or concern. California is not unique in that respect. While we lead the way in emergency preparedness, due to the fact that our state has always had as many or more declared emergencies than any other state, there are still many people who are completely unprepared to shelter in place or care for themselves in the event of an evacuation. We are working to correct that at all levels of government, and many of us serve on federal committees that are setting standards that should result in some long-term improvements, especially in the area of emergency sheltering.

I want to applaud NCD for your efforts to call attention to the plight of the disability community as a result of Hurricane Katrina. Your report sets a standard that everyone should be aware of, and I hope you will continue to promote its availability. I recently had the opportunity to visit New Orleans as part of my trip to our SILC Congress, and I took advantage of the situation to tour the city and its surroundings. There is no way that any news media coverage or other secondhand tales of what happened there could have conveyed that same powerful message. I would urge your Council to redouble your efforts to help the people of Louisiana recover from the disaster they faced, rebuild for a safer future, and return to homes and jobs that can support them in a manner befitting citizens of the United States.

You requested suggestions as to where research attention and funding could be applied. While there are undoubtedly dozens of areas that could benefit from additional disability-related research, I believe there are two that have yet to be completely resolved despite years of effort: employment and health care.

First is the issue of working people with disabilities who chose to spend years or lifetimes dealing with a disability and going to work on a daily basis. They have chosen to support themselves and/or their families in an attempt to maintain a decent standard of living. I include myself in that grouping, and like many of those other individuals I hope to be able to retire in a few years or decades. However, a bigger challenge will await me when I retire, as my fairly modest 401(K), individual retirement accounts, and the equity in the home that I have purchased will count against me should I ever begin to need public health care or benefits beyond what is provided by Medicare.

It is unfortunate that, despite all the attention being focused on getting people with disabilities to work, so little attention has been given to changing the rules that will impoverish us, leave our children with nothing but memories of us, and require us to spend down whatever assets we have while awaiting the opportunity to benefit from the services and programs people who did not work have taken advantage of throughout their lives. Attention needs to be given to disincentives to employment that stretch into the retirement years. Someone needs to address these potential barriers to our future quality of life and determine how they can be eliminated, and hopefully very soon.

Another major problem for people with disabilities is health care, especially as it relates to durable medical equipment and the provision of expendable durable medical goods. The new Medicare standards for purchase of wheelchairs, which have never made sense to me because of the “in the home” restriction, have been compounded by policies that do not allow for the purchase of mobility devices that can be used on a daily basis outside the home. It takes a better quality or grade of equipment in order to endure the rigorous public and private transportation systems and the higher level of usage that might be expected in the workplace. However, little research has been done to indicate what impact the inability to obtain appropriate quality mobility devices is having on the unemployed portion of the disability community.

I would recommend that research funds, whether from NIDRR, NIH or ODEP, be set aside to review the records of those who have been denied mobility equipment to determine their employment status. Those who are unemployed should be interviewed to determine whether the inability to be provided this equipment has impacted their decision to work. To supplement that you could also interview those who are working, and who use such equipment, to determine if they feel that equipment is critical to their abilities to remain employed. While you could do such a study on any kind of assistive technology, wheelchairs and scooters are the areas that get the most attention when Medicare policy changes, and those polices are then usually adopted by the states for their Medicaid programs.

Too often, monthly supplies of durable but disposable medical items, such as urological supplies, are limited by federal health care programs. While I am fortunate that I am not required to use intermittent catheterization for my bladder management, I cannot envision being restricted to using only two such catheters during a given month. You are all aware of similar restrictive policies that jeopardize the health of people who rely on government health care, and I would expect research to show that such policies cause an even higher cost in recurring treatment and hospitalization, not to mention loss of productivity in the labor force.

I hope NCD will continue to advocate for the removal of such barriers to quality of life, health and competitive employment for people with disabilities. Without the steps you have taken throughout your agency’s lifetime, we would not have anywhere near the quality of life we enjoy today.

Attached to this testimony is some additional written information which you may find interesting. It is a simple recap of some of our activities in partnership with the Department of Rehabilitation and other organizations during the past year. They fall under common disability advocacy headings, but do not represent even half of the different activities where we expended our limited time and funding.

Thank you again for coming to California, and please return again soon.

For National Council on Disability

January 30, 2007
San Diego, CA 

Testimony of

Michael C. Collins, Executive Director
CaliforniaState Independent Living Council

Appendix A

State Independent Living Council Activities and Partnerships

2006

KEY TO COMMONLY-USED ACRONYMS

SILC – California State Independent Living Council

DSU – Designated State Unit

DOR – CA Department of Rehabilitation (the DSU in CA)

CIL – Center for Independent Living (federal term for an ILC)

ILC – Independent Living Center (in California)

DRLC – Disability Rights Legal Center (at Loyola Law School)

PAI – Protection & Advocacy, Inc.

CalTrans – California Dept of Transportation

CalACT – California Association for Coordinated Transportation

CFILC – California Foundation for Independent Living Centers

TDA – Transportation Development Act

FTA – Federal Transit Administration

FAA – Federal Aviation Administration

RSA – Rehabilitation Services Administration

OES – California Office of Emergency Services

CMS – federal Centers for Medicare & Medicaid Services

TRANSPORTATION

California Association for Coordinated Transportation (CalACT). The SILC is a dues-paying member of the California Association for Coordinated Transportation (CalACT), which is the trade association for the paratransit providers in the state. The SILC, DOR and CIL staff attend their two conferences each year, participate on their work groups, and the current SILC Chair is a member of the CalACT legislative committee. Additionally, SILC supports the attendance of consumers with disabilities at CalACT events.

FTA and FAA rule-making. The SILC staff and some members provided written input to the DOT concerning regulations for air travel and transit involving people with disabilities. Several CILs also provided testimony, and coordinated that activity with the California Foundation for Independent Living Centers (CFILC), which is the trade association for CILs in California.

TDA Advisory Committee. The SILC Executive Director is a member of the Transportation Development Act Advisory Committee for the California Department of Transportation (CalTrans). This committee works to rewrite the Transportation Development Act on a semiannual basis, and meets quarterly. The SILC’s purpose in participating on this committee is to assure that the needs of people with disabilities are fully considered and met during the development of transit and right of way regulations.

Transportation task team of the long-range strategic plan on aging. The SILC Executive Director and one member participate on a committee that meets monthly to develop grant applications to obtain federal funding for transportation projects in California. Our purpose in participating is to assure the needs of the disability community are met whenever transportation issues are under discussion. Partners include CalTrans, CalACT and its members, CCOA, CDA and transportation consultants.

Taxi Advisory Committee. The SILC Executive director, CIL staff and several consumers participate on a committee that is developing a model taxi ordinance for use in Sacramento and possible use statewide and beyond. Our purpose is to assure that each taxi driver is aware of the needs of people with disabilities, and that each fleet has one accessible vehicle on duty 24 hours pre day.

HOUSING

HousingCA Conference. SILC staff, members, the DOR, and consumers participate in this annual conference and present workshops about housing rights for people with disabilities. The purpose for this participation is to assure that the need for accessible affordable housing is well understood by the mainstream housing advocates in California. The SILC also supports attendance of consumers at this annual conference by providing scholarship funds.
The SILC Executive Director participates in this conference each year, and periodically makes presentations about the need for accessible affordable housing in quality neighborhoods.

California Institute for Mental Health Supportive Housing Conference. The SILC Executive Director participates in this annual conference and makes periodic presentations about the need to include people with all types of disabilities in supported housing programs. Additionally, the SILC Executive Director was on the initial committee that reviewed grant applications and dispensed funding for this type of housing statewide.

Standards Development for Universal Design & Visitability. The SILC Executive Director, members,  a DOR representative and consumers have participated on committees hosted by the California Department of Housing and Community Development to develop standards for universal design and visitability that must be made available to all residential home buyers in California. These standards are now applied to townhomes and condominiums, which is a unique program in our state.

HEALTHCARE

DHS ODH “Call to Action” Advisory Committee. The SILC Executive Director and a DOR representative, along with consumers, participate in quarterly meetings to advise the Office on Disability and Health about the importance of outreach to a broad variety of people with disabilities. This committee has succeeded in having a question about disability placed in the state health information survey in California.

Medi-Cal IHSS respite care subcommittee. The SILC executive director and consumers participated on a committee hosted by the Department of Health Services and Department of Social Services that is developing standards for respite care for recipients of Medi-Cal services. The provision of this respite care will prevent the burn-out of caregivers and support the ability of people to stay in the community for a longer period of time.

Medicare Modernization Act (MMA) Outreach Subcommittee. The SILC has participated with the California Medicare Coalition, CMS, California Department of Aging, DHS and the pharmaceutical industry to assure that all Californians with disabilities who are Medicare recipients, or eligible for both Medicare and Medicaid programs, were advised of the implementation of Medicare Part D in a timely manner. As a result of our efforts, very few complaints were received from the disability community about the implementation of this federal program.

Advisory Committee for the Surgeon General’s “Call to Action” report to improve the health and wellness of people with disabilities. The SILC Executive Director participated as part of a national committee to respond to the U.S. Surgeon General’s initial report, and we focused on the findings in the report regarding the impacts to the disability community. As a result of our work, a second report has been issued by CMS on this subject.

OLMSTEAD DECISION

Olmstead Advisory Committee. SILC staff, members, CIL staff, the DOR and consumers participate in the state’s Olmstead Advisory Committee and subcommittee meetings on a quarterly basis. This committee is determining how to best assure that California’s healthcare and disability programs can be made available to the widest constituency of people with disabilities in community settings. Additionally, a SILC member and some CIL representatives are appointed members of the Olmstead Advisory Committee.

CalCareNet Portal Advisory Committee for the California Health and Human Services Agency (CHHSA). SILC staff and DOR have been actively involved in helping the state develop a new Internet Portal that contains important information for the disability community, and is also fully accessible to people with all types of disabilities. As a result of our work, a new format has been developed and will be released in the next few weeks.

Olmstead Trainings. The SILC Executive Director developed a Powerpoint© presentation about the background behind the Olmstead decision, and the impact it can have on the disability community. This presentation has been distributed to independent living centers and SILC members statewide, and has even been used in other states. As a result of this education, there is a greater level of understanding about the impact of the Olmstead decision and how it can be implemented most effectively.

CRIME AND ABUSE

Family Violence Conference. SILC staff, members, CIL staff and consumers attend an annual international family violence conference that also addresses violence against people with disabilities. CILs and the SILC Executive Director have made presentations at this conference in the past. Our participation assures that people will equate the prevalence of violence against people with disabilities with the work being done in the “mainstream” crime and abuse programs.

National Conference on Abuse of Children and Adults with Disabilities. SILC staff, members, CILs and consumers participate in the international conference that has been held in California each spring. The SILC Executive Director is a member of the Executive Steering Committee for this event, and also has presented plenary sessions and workshops at this conference, as have many consumers and CIL staff.

Interagency Committee on Prevention of Crime and Abuse against People with Disabilities. SILC staff participate in this committee comprised of California state agencies and representatives from the justice system and experts on crime and abuse who meet quarterly to coordinate the work of our respective agencies on this subject.

Disability Think Tank on Crime and Abuse.  The SILC coordinates with the State Council on Developmental Disabilities, as well as national experts on this subject, to co-host a think tank or statewide forum on the subject each year. Our purpose is to elevate the discussion about the need for programs that key on the needs of the disability community when it comes to prevention of crime and abuse.

EMERGENCY PREPAREDNESS

Statewide Emergency Planning Committee (SWEPC). SILC and DOR staff participate as members of the Office of Emergency Services (OES) statewide emergency planning committee that meets quarterly to discuss the latest events and current threats posed by emergencies or natural disasters in California. We have also made presentations about the unique needs of the disability community at these meetings and at regional Mutual Aid Response Advisory Committee meetings. During the past year the SILC compiled a 120-page database or listing of local and statewide disability agencies and service providers, which can be used by the SILC and DOR to alert local public safety agencies about resources wherever emergencies occur.

Emergency medical shelter committees. SILC, DOR and other agencies that serve the disability community participate in quarterly meetings regarding policies and requirements for emergency shelters for people with disabilities in California and at the national level. During 2005-2006, there have been approximately 15 meetings on this subject and standards are being developed that will assure full shelter accessibility in the “mainstream” shelters for people (with disabilities) who might have been sent to hospitals, nursing homes or other inappropriate settings during past disasters.

Disaster Resistant California Conference. The SILC Executive Director and DOR representatives participate in this annual conference to focus on current threats and past disasters of a large-scale nature and how California will react to them in the future. The SILC Executive Director has made presentations about the need for awareness and programs that serve the disability community.

Presentations on Emergency Preparedness for People with Disabilities. SILC staff have made good use of Powerpoint© presentations developed by the Executive Director to educate organizations throughout California and major national conferences about the need for a heightened level of preparedness when it involves the disability community. These presentations have occurred at statewide conferences, local meetings, national conferences hosted by the Department of Homeland Security and others, and at Abilities Expos. Hundreds of individuals have been present during these presentations.

Coordinating, gathering, storing and distributing emergency disaster medical equipment. In the aftermath of Hurricanes Katrina and Rita, the SILC issued a statewide call for donations of wheelchairs and other durable medical equipment (DME) for shipping to the Gulf coast in order to meet the needs of survivors who had been evacuated without their equipment. As a result, the SILC gathered an entire storage unit full of these items which were eventually donated to relief organizations.

OUTREACH

Tri-State project. For the past five years the SILC has coordinated a series of meetings with our counterparts in Arizona and Nevada to determine how best to serve the residents in the border region that is extremely rural. We have hosted meetings in southern Nevada, and are joined in this effort by SILC, DOR and CIL representatives from all three states, as well as local agencies serving people with disabilities. Our next meeting is planned for the spring of 2007, and a matrix we developed that lists all known service providers in the Tri-State Region has been posted on the Arizona CyberCIL website.

Abilities Expos and Job Fairs.  SILC staff, the DOR and CIL representatives donate literally hundreds hours of staff time to assure that attendance at these events includes information about independent living and vocational rehabilitation services. There are two Abilities Expos held in California each year, and dozens of job fairs or AT fairs held in different locations in the state.

Public Service Announcements (PSA). The SILC continues to respond to over 2,000 calls from Spanish-speaking individuals each year as a result of our preparation and dissemination of public service announcements in both English and Spanish that advise of the availability of independent living services to people of any age. These calls are handled by SILC staff and callers are referred to the appropriate local independent living centers or area agencies on aging.

Native American Vocational Rehabilitation. SILC and DOR representatives meet annually with the directors of California’s Native American Vocational Rehabilitation Projects funded by Section 121 of the Rehabilitation Act. The SILC hosts this meeting in conjunction with a quarterly SILC meeting, to allow interested SILC members to attend, and also invites the Rehabilitation Continuing Education Program and important Native American statewide groups to participate as well. As a result of this collaboration, the SILC and the DOR directors are considering the support of a project that will include a summit on independent living for tribal communities, and a possible grant for community organizations seeking to establish an independent living center project as part of a Native American Vocational Rehabilitation program.

EMPLOYMENT

California Governor’s Committee on Employment of People With Disabilities (GCEPD). The SILC Chair is an appointed member of the California Governor’s Committee on Employment of People With Disabilities (GCEPD), as a result of AB 925 that implements the Medicaid 250% Working Disabled Program in California. The SILC Executive Director also attends as many of these meetings as possible.

California Health Incentives Improvement Project (CHIIP)   The SILC Executive Director and DOR representatives are appointed members of a committee that works to assure that all potential work incentives are adopted in California and publicized widely. These include the aforementioned AB 925, the availability of personal assistant services in the work place, and similar programs.

CaliforniaState Disability Inclusion Team. SILC and DOR representatives participate in quarterly meetings of a committee that represents California in national efforts to include people with disabilities in volunteer and national service programs. The committee meets quarterly and the SILC Executive Director has also made presentations to the National Service Disability Inclusion Project conference at the Federal level.

AGING ISSUES

Coordinated Leadership Conference. The SILC, DOR and CILs are active participants in the planning and support of the annual Coordinated Leadership Conference which was co-founded by the SILC and the California Association of Area Agencies on Aging. This annual conference results in the gathering of disability and senior advocates to discuss common issues and gain a better understanding of each other’s needs. Additionally, the SILC and California Commission on Aging use this annual conference to hold public hearings and committee meetings that will enable larger attendance from these communities. The SILC also funds consumer attendance at this conference.

California Commission on Aging Joint Activities. The SILC and CCOA participate in each other’s activities involving the development of California’s strategic plan on aging and the state plan for independent living to assure that there is a full understanding and inclusion of each other’s constituencies in our programs. Additionally, the current SILC Chair is the president of the Area Agency on Aging Advisory Committee and attends monthly meetings of that organization as well as periodic California Commission on Aging meetings. The SILC and CCOA are planning a future joint meeting of our two councils.

PERSONAL ASSISTANCE SERVICES

In-Home Supportive Services (IHSS) quality assurance committee. The SILC and DOR staff, along with CIL and consumer representatives, participated in the development of regulations for the delivery of Medicaid-supported personal assistance services that meet the needs of people with all types of disabilities.

Advisory Committee for the NationalCenter for Personal Assistance Services. The SILC Executive Director is an appointed member of this national steering committee for a NIDRR grant seeking to increase the availability of personal assistance services nationwide.

California Association for Public Authorities (CAPA) meetings. California’s system for delivering Medicaid-supported personal assistance services is called In-Home Supportive Services, and is routinely delivered through a public authority established as the employer of record in each county. The SILC Executive Director perioically attends quarterly meetings of their statewide association, and also interacts frequently with individual public authorities in counties throughout the state. Our purpose for being involved is to assure that, whenever possible, IHHS registries coordinate with local CILs for the recruitment and provision of caregivers needed by consumers.

DISABILITY RIGHTS

RespectABILITY Coalition. The SILC, in collaboration with the Disability Rights Legal Center and Protection & Advocacy, Inc. (PAI), co-founded a “consumer caucus” to educate individuals with disabilities about their rights and opportunities for coordinated advocacy. This conference, founded in 2003, has now expanded to include about 65 California disability organizations and attendance by about 400 advocates and leaders every other year. The SILC, DRLC, and PAI are still on the Executive Committee, and provide the bulk of the funding for this activity. Besides bringing in noted speakers on disability rights, and supporting workshops on subjects relevant to the disability community, this conference and the SILC support a large number of scholarships to assure that consumers who would not otherwise be able to afford to attend can participate in this event.

Disability Capitol Action Day. The RespectABILITY coalition that has formed as a result of the initial statewide conference also supports an annual gathering of advocates at the Capitol to meet with legislators and other leaders. It has evolved into a day-long event to educate about legislation and important issues for people with disabilities.

EDUCATION

Transition Community of Practice Steering Committee. The SILC and DOR representatives participate as part of a statewide group, and national committee, to improve the educational system’s approach to transition. Our goal is improved outcomes, leading to higher education and vocational education opportunities for young people with all types of disabilities.

IDEA Reauthorization. The SILC staff, DOR representatives, and CIL staff presented testimony during three hearings held in California regarding the reauthorization and development of regulations for the Individuals with Disabilities Education Act. The purpose is to assure that all young people with disabilities have an opportunity for an education in the least restrictive environment, and that they are provided the full range of accommodations needed to obtain that education.

YOUTH TRANSITION

Improving Transition Outcomes Project (ITOP) Steering Committee. The SILC and DOR participate on this committee, in coordination with the Employment Development Department, CA Workforce Investment Board and staff of Sonoma State University, to assure that federal grant funds are expended in a manner that will assure that students with disabilities are provided information about transition opportunities that will improve their quality of life and thus enhance their ability to live independently in the future.

Youth Leadership Forum (YLF). The SILC, DOR, GCEPD and Employment Development Department have co-sponsored the annual Youth Leadership Forum in California for the past 14 years. The SILC and DOR provide $10,000 in funds to support the accommodations needed by exceptional high school juniors who are disabled during a week-long visit to Sacramento and the Capitol. Besides SILC and DOR staff time, many CIL representatives and SILC members have donated time as counselors or mentors during the past several years. California is the birthplace of YLF, and it is only through the joint efforts of the DOR, SILC and EDD that this event still takes place on an annual basis.

SILC PROJECTS

Review of the State Medicaid Plan and Waivers. The SILC and DOR cooperate to assure that education and outreach efforts, as well as the coordination of advocacy and research, all take place concurrently in California. The SILC is currently supporting a multi-year project to review the state Medicaid plan and determine how it can most effectively serve people with disabilities in the community. Our grant research team has reviewed California’s plan and waivers, and meets periodically with a steering committee and members of the disability community statewide through additional forums and focus groups. The report that is generated during this research project will result in recommendations that could influence California’s future delivery of Medicaid-supported services. The DOR, CIL staff, Department of Health Services, PAI and others interested in quality healthcare for PWD serve on the workgroup.

Video. SILC projects include the development of a video about independent living history and philosophy, keying in on California’s role in the development of this movement through the formation of the Center for Independent Living in Berkeley and the events that occurred around that time. Hundreds of hours of interviews and news footage have been collected to supplement the historical footage that is available through a variety of resources. The SILC has assembled a steering committee to advise the film producer, and SILC, DOR and CIL staff are all members of SILC project steering committees.

Resources for Independent Living. People with all types of disabilities can benefit from a resource that lists all state-provided or funded services and programs available to people with disabilities who live in the community. Our 1998 report entitled Independent Living, which listed over 70 such services available in California, did that. The SILC is in the process of researching and reissuing an updated edition of this report early in 2007, which will form the core of the database for a future online resources database project.

SILC members and DOR staff routinely review applications for grants distributed by our respective agencies, and include the California Foundation for Independent Living Centers and individual CIL staff in all advisory committees put in place by the SILC or DOR.