National Council on Disability
Quarterly Meeting
April 16-17, 2007
The Crowne Plaza
Atlanta, GA

MEMBERS                                                              
John R. Vaughn, Chairperson                                   
Pat Pound, First Vice Chairperson                           
Milton Aponte                                                              
Victoria Ray Carlson
Chad Colley
Barbara Gillcrist (via teleconference)
Kathleen Martinez
Lisa Mattheiss
Marco Rodriguez
Linda Wetters

MEMBERS (ABSENT)
Glenn Anderson, Second Vice Chairperson
Robert Davila, Ph.D.
Anne M. Rader

STAFF                                                                                   
Mark S. Quigley, Acting Co-Executive Director                       
Martin S. Gould, Ed.D., Acting Co-Executive Director             
Julie Carroll, Senior Attorney Advisor                                     
Joan Durocher, Senior Attorney Advisor
Gerrie Hawkins, Ph.D., Senior Program Analyst
Mark Seifarth, Congressional Liaison
Pamela O’Leary, Staff Interpreter
Stacey Brown, Staff Assistant

STAFF (ABSENT)
Jeff T. Rosen, General Counsel
Brenda Bratton, Executive Assistant
Carla Nelson, Secretary

GUESTS
Leanne West, GTRI
Kent Earnhardt, NC Protection and Advocacy
Patsy Nickle, Mentor ABI, Center for Comp-Services
John Timberlake, CPR
Jamie Cahill, GA Governor’s Council on Disability
Jennifer Harris, Mother
Linda Priest, Atlanta Post Polio Association
Pam Dorwarth, U.S. Access Board
Cindy Sue Causey, Self/Georgia Voices
Ken Mitchell, GPR
Dr. Robert McKeon, FODAC, GAO
Jerry Lang, Lower Muskogee Creek Tribe
Pamela Williamson, Southeast DBTAC/Burton Blatt Institute
Karen Harrison, Step, Inc.
Pat Puckett, GA SILC
Rebecca Kamage-Tuttle, Disability Link
Marlene Bryor, GA Department of Education
Barbara Alleman, Child Care Resource & Referral Agency
Ruby Moore, Georgia Protection and Advocacy Office
Doris Chadwell, GA Tools for Life
Mark Swanson, CDC
Harvey Clark, Center for Visually Impaired
Lee Miller, GA Committee on Employment of People with Disabilities
Helene Mitchell, GA Tech
Irene Gruenhut, Self
Ellyn Jeager, Mental Health America-GA
Marcia O’Shaughnessy, Fulton County Commission on Disability Affairs
Jan E. Stevenson, GA Department of Education/DES
Jason Shipper, Office of Senator Johnny Isakson
David D. Turner, Self
Lisa Sinclair, CDC/NCBDDD
Rie Kennedy-Lizotte, GA Office of Developmental Disabilities
Marie B. Latta, Self/Latta Enterprises (ADA consulting)
Phyllis Smith, Georgia Mountains Community Services
Heather Stutz, Concerned Paratransit Riders
Patricia Buntin, Self
Michelle Brown, GMCS
Susan Schanerman, Self
Shanti Arron, NFB of GA
Salimah S-Major, CACP
Richard Keeling, IRS
Marcie Roth, National Spinal Cord Injury Association
Elliott Schwalb, U.S. Department of Health and Human Services/Office of Civil Rights
Frank Billue, Federal Transit Administration, Southeast Region
Gregory Mack, American Red Cross
Tim Albritton, Georgia Emergency Management Agency
Brenda Pierce, CIL of the Florida Keys
Alfred Rocky Moore, Atlanta Fulton County EMA
Suzanne Lord, Atlanta Fulton County EMA
Crystal Lyons, Coastal Bend Center for Independent Living, Corpus Christi

CALL TO ORDER
Chairperson Vaughn called the meeting to order at 10:15 a.m.

ACCEPTANCE OF THE AGENDA
Motion 1
Ms. Pound moved to accept the agenda as presented.  Passed.

APPROVAL OF THE MINUTES
Motion 2
Mr. Colley moved for approval of the minutes.  Passed.

CHAIR’S WELCOME
Mr. Vaughn welcomed Council members, staff and guests to the meeting and stated the Council’s delight in being in Atlanta.

PUBLIC COMMENTS
Ms. Lisa Sinclair, from the Centers for Disease Control and Prevention (CDC), stated that HHS-CDC recently released a mid-course review of the nation’s health plan—Healthy People 2010.  This report for the first time reveals health data for people with disabilities, ranging from health behavior to clinical practice, environmental issues and participation. 

She stated that CDC has just released the first ever state chart book on disability and health. This is an analysis done by her team of the behavioral effects of the surveillance system available in all 50 states and territories. CDC is looking to get the surveillance system implemented in the tribes.

Ms. Sinclair mentioned that the National Academy soon will release an update to the 1991 Disabilities in America report scheduled to be released in the fall.

The Surgeon General’s report: 2005 Call to Action articulates the need for health promotion and wanted the Council to be aware of it.  She also wanted to solicit support from the Council in engaging health promotion for people with disabilities.

Ms. Jamie Cahill, of the Georgia Governor’s Council on Disability stated that her interest was in getting people with disabilities back to work.  She has worked closely with Newt Gingrich and Senator Johnny Isakson, as well as with the Shepherd Center for the past 12 years. The government has spent over $20,000 purchasing voice activated equipment, training sessions to enable her to be qualified to return to work.

Mr. Richard Keeling, IRS, works with the outreach and education department, promoting earned income tax credit, which includes people with disabilities. He stated that the Revenue Reconciliation Act of 1998 placed the IRS in four different operating positions to better serve customers.

Mr. Keeling stated that the IRS has not done a great job for people with disabilities and is seeking support from national partners like Easter Seals or Goodwill. He mentioned that they have community-based partnerships around the country made up of outreach and education, which is very important in offering free tax preparation assistance and getting people involved in individual development savings accounts or matched savings accounts as well as basic financial literacy.

Mr. Keeling stated that his agency’s job is to alleviate the fears people have of possibly losing their benefits, and let them know their earned income tax credits will not affect their benefits.

Ms. Marcie Roth, executive director and CEO of the National Spinal Cord Injury Association and co-chair of the Coalition for Citizens with Disabilities ad hoc task force and the emergency preparedness task force. She thanked the Council for its letter to the White House on signing the UN convention, but remains very frustrated on the United States not taking a position.

Ms. Roth asked that the Council continue to bring whatever pressure it can on the Administration to sign this very important convention and take a strong leadership position on the ongoing crisis, access to rehabilitation, mobility and technology. She stated that it is critical not only for people with disabilities around the world, but for people with disabilities in the United States.

In closing she asked that the Council not forget the children with mental health needs who are being institutionalized at a growing rate.

ACTION ITEM
Mr. Vaughn stated that the Council will now have Council Member reports.

COUNCIL MEMBER REPORTS
Mr. Vaughn stated that during his many recent visits to Washington, D.C. he has met with Homeland Security. He stated that he attended a meeting with Marcie Roth’s organization, CCD, and FEMA. A letter was sent to FEMA encouraging them to give the Council an update so we can better advise them on the things they are required to be doing.

Mr. Vaughn mentioned the establishment of the Homeland Securities Committee and the tremendous interest in joining the committee shown by many Council Members.

Ms. Pound stated that she participated on the ADA, health, disability data and educational outcomes teams and is looking forward to participating on the emergency management team.

She stated that she also has been busy promoting NCD’s telecommunications and emerging technology papers.

Mr. Colley stated that his involvement in the disability community is on the veteran’s side. He was on a Commission that afforded him the privilege of studying the entire gamut of the VA’s health care system.

Mr. Colley stated that as finance chair he has been exposed to aspects of the job he really did not think needed his involvement, and it has become rather challenging.

Ms. Martinez stated that she is the executive director of the World Institute on Disability (WID).  WID has had a big interest in the whole concept of financial literacy for people with disabilities and looking at how people with disabilities can take advantage of the programs that are expanding and how these programs interface.

Ms. Martinez stated that WID also is very involved with Governor Schwarzenegger’s health reform program in California. She will continue to work with WID’s employment projects for Latinos with disabilities.

Ms. Martinez also is the liaison for NCD’s International Watch Committee. It continues to discuss the Convention and the role the US will play in assisting other countries in the implementation of the Convention if those countries sign and ratify it.

Mr. Rodriguez stated that he is very excited for the Council as it draws to a close with its financial incentives report that will be reported on tomorrow.

Mr. Rodriguez stated that he also is serving on the employment, ADA and finance teams.

Ms. Wetters stated that she attended a beneficiaries conference sponsored by the Ticket-To-Work Advisory Committee and the Social Security Administration. One person from every state and territory in the United States was brought in and asked to discuss the current problems and/or obstacles they saw in terms of receiving social security and planning for the future, and to offer potential solutions and recommendations. 

Ms. Wetters stated that she spent two days in small groups addressing questions in detail. Results of the discussion were presented to a distinguished group of people from federal agencies and non-profit groups. They discussed global payment, the definition of disability, the transfer of children to adult services programs and what happens to someone on social security in those positions.

Dr. Kang reported that he attended the interagency meeting of the White House Initiative on Asian Americans and Pacific Islanders and focused on areas that could benefit the Council. Disability affects the functions of people with disabilities in every aspect of human life and affects their attitudes and the attitudes of others. Positive attitude is one of the core policies to improving the quality of life for people with disabilities.

Dr. Kang stated that private nonprofit organizations in the U.S., such as the National Organization on Disability (NOD) and the Franklin Roosevelt Institute, are demonstrating leadership. Included are former U.S. Attorney General Dick Thornburgh and former chairman Tom Langley. NOD and the FDR Institute presented the annual FDR disability award, noting the progress on disability issues. The adoption and signing of the UN disability convention is the single criterion for selecting the recipient of the award. 

Dr. Kang stated that he is one of the founders of the FDR international disability award and the advising chairman. He received sponsorship for this entire program.

He stated that he has been very interested in empowering wounded soldiers and has raised $200,000 from Korean churches and delivered it to Major General Case, with the U.S. Army.

Dr. Kang stated that on June 27 the Major General is scheduled for the weekly meeting in Washington, D.C. to discuss how this money is used to help wounded soldiers and their families get encouragement. Also, last year he donated 1,000 copies of his own book to wounded soldiers and their families. 

Mr. Aponte stated that he sat on the President’s Committee for People with Intellectual Disabilities. At the end of the year the Committee presents a report to the President on the work they have performed.  Dr. Pat Morrissey, Commissioner of the Administration on Developmental Disabilities at HHS, and Dr. Wade F. Horn, Assistant Secretary for Children and Families at HHS, are both on this council.

Ms. Carlson stated that she is enjoying serving on the various teams of the Council since her arrival six months ago. She has been the executive director of the National Multiple Sclerosis Society in Iowa and has served on the Iowa Commission for Persons with Disabilities.

Ms. Mattheiss stated that four years ago, through their church, she and her husband started an organization for families with disabilities. It began as a care giver program to support care givers in finding resources, including gas and cars that are needed to get to hospitals; training and workshops for parents on special education rights that are available; and things parents should ask for when they are in a fight with the school system.

Ms. Gillcrist stated that she attended a SAMHSA conference in which persons with mental illnesses are really organizing and getting out and trying to erase the stigma that goes along with mental illness.

Ms. Gillcrist stated that she was instrumental in the completion of a paper on the Civil Rights of Institutionalized People Act (CRIPA) that detailed the role of the Justice Department in this area.

FINANCE COMMITTEE REPORT
Mr. Colley stated that the Council was on a continuing resolution at a budget of $2.7 million.  The Council had an increase of $353,000. With the assistance of staff, those funds were allocated to areas where they were needed.

Mr. Colley stated that the Finance Committee has formalized the format for the financial statements to provide a clearer picture of its expenses and obligations that discloses 100 percent of program contracts and administrative contracts.

Finance team members will be receiving each quarter a check register of every single dollar, expenditure, and check made by NCD to assist and to inform everyone where the money is being spent.

Mr. Colley stated that after reviewing the obligation of expenses in March, the Finance Committee noticed that it had an excess amount in a couple of categories and a deficiency in one category, and thus reallocated a portion of the funds. The two funds that were in excess of their anticipated yearly needs were: emerging issues, which had been budgeted for $100,000 but has been reduced to $50,000; and report implementation, which had been budgeted for $100,000 but has been reduced to $75,000. The $75,000 will be placed into the travel budget.

Mr. Colley stated that on the March finance teleconference the committee recommended action to release the contracts for the two viable study programs being considered: State of Health Care for Americans with Disabilities, and Vocational Rehabilitation Act Outcomes and Effects. The requested amounts for the studies were $250,000 and $100,000 respectively. This was a $25,000 decrease from the original budget.

Mr. Colley stated that the Council’s midyear budget shows that it is at its target for full utilization. He noted, however, that Mr. Thomas Clark of GSA has indicated that the travel budget has exceeded its norm, so we need to be more efficient.

Mr. Colley stated that GPO erroneously included charges not related to the Council and that we are indebted to them for $12,000, and not the excess of $200,000. The Council is in its sixth month of the fiscal year and has not yet been charged for services GPO has been providing, such as the monthly fee for the Web site and any additional fees associated with processing, editing and posting of reports to the NCD Web site.

Mr. Colley stated that the Council was in negotiations with GSA for new office space. It was the agency’s intent to have new space by April 1, or sign a lease for and be allowed to vacate the space in 120 days.

The Council and GSA met on March 6 to discuss the possibility of subleasing the existing space. Unfortunately, this did not materialize. The next option is to request that GSA find us other space with their real estate system that could meet our needs for a lesser amount.

ACTING CO-EXECUTIVE DIRECTORS’ REPORTS
Mr. Quigley first thanked members of the planning committee for making this meeting a success, and thanked the folks from the Shepherd Center for meeting and conducting a tour of their facility during the Council’s stay in Atlanta.

Mr. Quigley informed Council Members, staff and those attending the meeting that there would be a reception in the hall area outside of the meeting room after the Monday Council meeting.

Mr. Quigley stated that the next Council meeting is scheduled to be July 24-26, 2007 in Chicago and that the Council is working with Marca Bristo and other former members as we participate in ADA celebrations in Chicago.

Dr. Gould reported that there will be an all-day meeting conducted by the GAO redesign disability policy forum. GAO has placed certain large disability programs in its high risk list for monitoring. Several of those programs include Social Security, Medicare and Medicaid. The program that GAO is conducting will include other programs that affect emergency preparedness.

Dr. Gould stated that GAO has been issuing reports on all disability policy programs for years.  They tended to have focused their analysis and evaluations on several key areas within the various programs, which includes funding and expenditures, the performance and outcomes of those programs, the accountability and the data produced by those operations and their functions, and then, finally, the interagency aspects.

Dr. Gould stated that he and Chairperson Vaughn attended a forum on global initiative for inclusive information and communications technologies (ICT) at the UN. Mr. Vaughn chaired a panel that dealt with core opportunities for inclusive technologies in people’s lives.  The work that was presented by the Council was based on a study that was produced in 2004 addressing universal design in ICT.   

In the area of homeland security there were a number of meetings over the past several months with FEMA and with the Consortium for Citizens with Disabilities, and others. 

Dr. Gould stated that Chairperson Vaughn sent a letter to Pauline Campbell, Director of the Office of Civil Rights at the Federal Emergency Management Administration asking for answers to a number of questions about FEMA operations around the country as of March 31, based on HR 5441 responsibilities and tasks for FEMA and NCD. We hope to get and use the information in our outreach and work with other organizations and nonprofit entities who really want to bring all of their talent and resources to bear in trying to help FEMA do its job.

Dr. Gould stated that the financial incentives paper of about 390 pages with a 500-footnote draft report is being considered for review. There is a small but powerful livable communities draft that staff is working on. It’s being edited and considered for planning and release at some point this summer. 

Dr. Gould added that the Council is nearing completion of its educational outcomes report that looks at implementation of No Child Left Behind and IDEA, and also is nearing completion of the performance indicators report. Both are under team management.

LIVABLE COMMUNITIES/BEST PRACTICES PANEL ONE
Ms. Mattheiss introduced the panelists and stated that they would be discussing what makes up livable communities. The concept of livable communities looks at advancing opportunities for people with disabilities to live in the communities of their choice in a manner they choose, by strengthening and coordinating transportation, housing, health, and education, as well as civic, cultural, and social infrastructures. The Council has expressed an interest in learning more from the public about accepted practices in building these communities. The panel will discuss creating these communities by focusing on civil rights and faith-based initiatives and what impact they are having in the communities.

Kent Earnhardt, Chair, PAIMI Advisory Council
Mr. Earnhardt discussed the issues and practices that make communities “livable” for people with disabilities – with specific reference to advocacy for civil rights for people with disabilities. His remarks related primarily to three questions:

1) What are the main challenges to opportunities for people with disabilities?
2) What are examples of effective practices in overcoming those challenges?
3) What can NCD pass on to the President and Congress about increasing those opportunities?

He referenced the National Council on Disability's definition of a "livable community" – to include five characteristics:

• Provides affordable, appropriate, accessible housing
• Ensures accessible, affordable, reliable, safe transportation
• Adjusts the physical environment for inclusiveness and accessibility
• Provides work, volunteer, and education opportunities
• Ensures access to key health and support services.

What are the main challenges to opportunities for people with disabilities?

From a legal civil rights perspective a large challenge is the enforcement of the multiple federal and state civil rights laws designed to protect the civil rights of people with disabilities in: housing; transportation; physical access and inclusion; work-volunteer-education opportunities; and access to key health and support services. He discussed several federal protection and advocacy laws for people with various disabilities. These federal laws mandate and fund many P & A programs through the states. Thus, a challenge to people with disabilities is to ensure that their states effectively implement and promote P&A programs. Civil rights are legal rights. They must be observed. States and lesser authorities may also enact and enforce additional civil rights that do not conflict with federal law. 

What are examples of effective practices in overcoming those challenges?

For civil rights for people with disabilities one effective practice is comprehensive and continuing legal education at various levels and the promotion of the many civil rights laws that already exist. Where additional laws are needed an effective practice is to advocate for the passage and observance of such laws. This may be done at the local, state and federal levels.

What can NCD pass on to the President and Congress about increasing those opportunities?

The National Council on Disability can pass on to the President and Congress that many opportunities for people with disabilities to live in the community are fundamentally dependent on the promotion, observance, and ultimately the enforcement of many existing, if not additional, federal civil rights laws. The President and Congress should honor, protect, promote and strengthen the spirit and letter of the Americans with Disabilities Act through the Executive Branch and Congressional action.

Patricia Puckett, Executive Director, Statewide Independent Living Council of Georgia
Ms. Puckett discussed the role of the center for independent living in Georgia in promoting civil rights and disability rights, and the background leading up to the Olmstead decision, and how that decision played a pivotal role in starting the independent living movement in Georgia.  Since Olmstead, the Statewide Independent Living Council (SILC) has received Medicare and Medicaid grants to help re-settle people from nursing homes. The SILC does outreach in nursing homes, in spite of a lack of funding for it.  Last year, 121 people were transferred into community-based services out of nursing homes.  Ms. Puckett emphasized, however, that there are over 6,000 people under the age of 65 in Georgia nursing homes and a very important change in long term care would be a change to the reimbursement rate for home and community based services.  One other area the SILC has been involved with is helping people exercise their right to vote by helping to make the polls accessible.

Ms. Puckett emphasized the need for more federal involvement in terms of enforcement of civil rights laws, and in terms of leadership and initiative.

Points related to transportation:  The first case the Atlanta Disability Law and Policy Center (ADLPC) took on was the Atlanta city transportation system (MARTA) around lack of access and a number of ADA violations. The lifts on the buses were not working and bus stops were not being announced. This case was settled before litigation in favor of the ADLPC.  Another case also resulted in the Macon Transit System settling before litigation. 

Karen Harrison, Project Director, STEP, Inc.
Ms. Harrison addressed the issues involved in working with culturally diverse populations regarding special education issues.  Staff at STEP, Inc. received training in reaching culturally diverse populations and there is overwhelming evidence to support the fact that building trust and respect is paramount in being able to reach families who have children with disabilities, particularly those from diverse populations. STEP is based on the family to family concept—parents or family members of children with disabilities providing information and training to other parents of children with disabilities. Any critical information NCD disseminates to families of color who have children with special needs should be distributed through organizations that have established trust with families. There is a network of over 100 Parent Training and Information Centers that would be willing partners in NCD’s efforts.

Ms. Harrison briefed NCD on details regarding the first annual Families of Color United for Special Education (FOCUS) conference in 2006. Hispanic and African American families from across Tennessee received training and support from STEP and many STEP partners as they joined together. As a result of this meeting STEP identified that some of the main challenges would be transportation, childcare, financial support to attend, and getting the word to the population STEP is trying to serve.  

It is important to get quality translation services and to ensure that families who speak different languages have interpreting support during any conference registration process, throughout the event, and to ensure all materials are accessible to them. STEP has found that it is very effective to post a Spanish 800 number that families can call to ask questions regarding the special education needs of their children with disabilities.  Responding to their questions promptly in their native language builds trust. 

One effective practice that STEP has found critical over the past 17 years of reaching families of children with disabilities is ensuring that families are informed of the event in time to plan. 

Partnering with other disability service organizations is critical. STEP’s invited speakers were mainly from the populations that we were trying to reach. The audience responded well to presenters they could relate to. Many families from culturally diverse populations will not attend events without their children. STEP worked closely with the Student Council for Exceptional Children to organize and provide childcare for families. They reported that for many families the ability to bring their children with them is what made it possible for them to attend.

Families are craving information about services and supports available to them for their children with disabilities. STEP advertised on Hispanic radio stations, through churches and other disability and community organizations. Many organizations are posting their information on the Web and making assumptions that families have the technology and ability to find what they need. It is important to realize that a large percentage of families from diverse cultures cannot access information via the Internet. Additionally, STEP put announcements in community fliers and school newsletters as opposed to major newspapers because many families do not get the newspaper. At STEP’s conference families received information, in both Spanish and English, about special education laws, special education services, and the importance of minority advocacy. STEP understands that families who experience challenges because of minority status, poverty, language barriers, or rural isolation do not typically turn out for this kind of event. The evaluations revealed that the panel presentation where each agency described its services and provided contact information was the most helpful to families. Because about 30 percent of the attendees spoke only Spanish, all sessions were simultaneously translated. Brenda Hilger, who serves on STEP’s governing board, noted that “there was such unity in advocacy and knowledge that minority polarization was essentially non-existent.” On the evaluation forms, many parents mentioned that, after having attended, they no longer felt alone in their situation. One parent said that she had learned “not to settle—to always serve as your child’s greatest advocate.”  

STEP’s recommendations to the President and Congress would be to ensure that agencies that have high quality, relevant information have the funds to provide that information to everyone. Recognizing that to reach families from diverse cultures takes extra time, resources, and planning is the first step to ensuring that culturally diverse families are not left behind. It has been extremely rewarding to have families call back to say that their children are receiving better educational services and that the parents have higher expectations for their life outcomes as a result of the information they received that was specifically targeted to meet the challenges facing African American and Hispanic families who have children with disabilities. 

Points related to transportation:  Many families from culturally diverse backgrounds also experience poverty. It is important to ensure, therefore, that funds are available for financial assistance to help families participate in events, and to provide free materials. STEP wanted to ensure that lack of transportation wouldn’t prevent families from coming to their conference and provided multiple ways to meet the transportation needs of the family. One example of being culturally sensitive was realizing that if we were providing funds for gas, we could not assume that all families have the ability to cash a check. STEP asked this question and provided enough cash in advance for the family to travel to the event and gave them the additional cash to travel home when they arrived. STEP purchased bus tickets or cab fare for some families.

Livable Communities/Best Practices Panel Two

Cynthia Wainscott, Member, Georgia Governor’s Mental Health, Mental Retardation and Substance Abuse Advisory Council
Ms. Wainscott addressed the main challenges to opportunities for people with mental-illness related disabilities. 

Disability as a result of mental illnesses often can be avoided or minimized by early intervention. This is rarely the reality. Most people who need treatment never receive it.  Of those who do, there is an average of 7 years from the appearance of first symptoms to first treatment. Public mental health systems are woefully under funded and typically only the most ill people can access services.  The result is unnecessary disability, dependency and premature death. People with schizophrenia who are served in our public systems die an average of 25 year earlier than the general population. The good news is that with treatment and support even people who have become disabled as a result of mental illness can enter “recovery” and live satisfying, contributing lives in their communities.  

Discrimination exists in insurance coverage, with arbitrary exclusions, higher co-pays and deductibles, and lower life-time limits. With treatment and supports most people with mental illnesses can live successfully in communities. Without treatment and supports many are consigned to homelessness, incarceration, and suicide.

The mental health of returning veterans presents both a challenge and an opportunity. A high percentage of veterans returning from Iraq have post-traumatic stress disorder (PTSD) and other mental health concerns. Fifty percent of Army National Guardsmen and some forty-five percent of Army and Marine reservists have reported mental health concerns. The risk of depression is high among veterans who are grievously wounded.  Their sheer numbers and geographic dispersion presents a problem but there is an opportunity to care for the whole returning veteran in a way that has never before happened.

Ms. Wainscott gave examples of effective practices:

Early identification and treatment of the symptoms of mental illness leads to better health and better life outcomes. Post partum depression is the most common complication of pregnancy, affecting the mother in 1 in 10 births. Less than 1/3 of the ill mothers receive treatment. With screening, identification and treatment mothers can mother. Families can stay intact.

Without intervention, young people with mental illnesses have a school drop-out rate twice that of the general population, and are at high risk of substance use and abuse and of involvement in the justice system. With early identification and appropriate treatment and support they almost always can avoid disability and remain in school. 

A significant barrier to treatment is insurance discrimination. A number of states have demonstrated the economic viability of providing equitable mental health benefits in private insurance. A recent Institute of Medicine report advises that our health system can be improved only when mental health is integrated with the general medical system.  Cherokee Health System in Tennessee is demonstrating the value of integrating mental health with the general medical system.

Peer supports have been demonstrated to improve functioning and productivity, and to increase natural supports in the community at half the cost of traditional services. This peer support model could be applied to veterans with mental illnesses, many of whom return to small towns and cities remote from VA health centers and without access to adequate mental health services.

Ms. Wainscott recommended several items to NCD, including that all federally funded health and education programs should provide incentives for early identification of the symptoms of mental illnesses in people of all ages. Congress should pass and the President should sign legislation that will move us toward ending discrimination in health insurance.  For example, S 558 - Mental Health Parity Act of 2007 and HR 1424 - Paul Wellstone Mental Health and Addiction Equity Act of 2007.

Congress should provide funding for a comprehensive program to meet the mental health needs of veterans who live in areas remote from VA health facilities, by:

• contracting with individual community mental health centers for provision of needed services, and
• contracting with national consumer-focused mental health organizations to train veterans to serve as “stigma busting” peer outreach workers and peer counselors. 

Points related to transportation:  None.

Eleanor Smith, Founder, Concrete Change
Ms. Smith reviewed (via a PowerPoint presentation) the visitability movement, which she stated is defined by its task to make a few essential access features the norm in new home construction in ordinary houses built for the open market. This would include: one zero-step entrance (front, side, or back); 32 inches of clear passage space through all interior doors; and a bathroom on the main floor. Ms. Smith stated that at least 98 percent of new houses are built with these major barriers. The impact of this lack of access is extremely harsh and results in isolation, sub-standard housing, high renovation costs, and increased institutionalization.

Ms. Smith discussed the myths and facts about visitable construction including the myth that the only acceptable location for a zero-step entrance is at the front of the house, and a zero-step entrance works only on a flat lot. Another myth is that a zero-step entrance is feasible only when building on a concrete slab. However, building with a basement or crawl space does not preclude having a cost-effective zero-step entrance.

Ms. Smith reviewed the successes to date in universal basic home access/visitability. She stated that there are visitability ordinances in over 40 localities.

Basic access is not expensive. Planned in advance, basic access on new homes costs little but the costs of un-visitable houses are social and emotional; financial (home renovation costs); unsafe, unhealthy living conditions for those who cannot renovate; and increased institutionalization of people who can’t return home from the hospital after accidents or other medical crises.

Points related to transportation:  None.

Virginia Piper, Board Member, LifeLine
Ms. Piper devoted her time to describing LifeLine. LifeLine is a faith-based organization “reaching families of those with special needs with support, education and respite.” The organization began in 2003 as a ministry of Hamilton Baptist Church in Chattanooga, TN. Hamilton Baptist is a small congregation of only 100 members, who became committed to reaching the disability community through LifeLine.

One described need was respite. LifeLine has collaborated with the UTC Psychology Department, which provides respite opportunities through the use of student volunteers who are able to obtain course credit for their time. Other respite opportunities have come in the form of a parent co-op group started by LifeLine.

Education is a major focus of LifeLine. Not only is education important for families but also for those providing education to children in the Chattanooga area. In collaboration with the STEP organization LifeLine sponsors workshops that provide instruction on the Individuals with Disabilities Education Act (IDEA) to families so they can advocate and obtain the best possible educational program for their child. In collaboration with Oakwood Baptist Academy, LifeLine provides workshops to teachers on special needs topics so the private school can best meet the needs of all its students. LifeLine also collaborates with the Hamilton County Department of Education Superintendent’s Exceptional Education Parent Advisory Council as well as the TC Thompson Children’s Hospital Parent Advisory Council. The public school advisory council works to provide solutions for concerns that families have regarding their experience with the system. Likewise, the hospital council provides educational experiences for residents to see firsthand what challenges families face when raising a child with special needs.

LifeLine has been and will continue to be a catalyst for programs in the Chattanooga area for families or individuals experiencing special needs. One of the main challenges to opportunities for people with disabilities is funding. One of the visions for LifeLine is to be able to support employment programs for people with disabilities.

LifeLine has accomplished a tremendous amount with very little. Funding faith-based initiatives more readily could result in additional programming by these organizations, thereby relieving the government of that particular responsibility. Asking a local church or ministry organization for help fosters a sense of community where it is most needed and appreciated.

Jerry Lang, Native American Advocate and Member, NCD Cultural Diversity Advisory Committee
Mr. Lang discussed how his experiences with the Georgia American Indian Community apply to the national Indian population, which he emphasized is also applicable to the general population. The exception is that the problems facing the minority Indian culture are more pronounced.

According to the latest census of the United States Census Bureau there are 27,373 American Indians living in Georgia (.3 % of the state’s population). All other ethnic groups have disability percentages of less then 15 percent, while the disability percentage for American Indians is 26.4 percent. He added that one of every four people with a disability need some form of assistance to get around and that the working age expectancy of the Indian population is less then any other. Unemployment near many reservations nationally may run as high as 70 percent.

He discussed how in 1966 he directed a rehabilitation program funded by the U.S. Department of Labor at the Federation of the Handicapped in New York City. The program was designed to evaluate, train and return disabled individuals to gainful employment. The first day a person came into the facility he or she spent three hours in evaluation and three hours working in the sheltered workshop. The minimum wage was $1.60 then, and at the end of that first day the person was handed $4.80 in cash. 

Georgia has always had a good state VR program, but there has never been enough money to meet the needs of people with disabilities. In 2000 the Lower Muskogee Creek Tribe of Georgia became the first state recognized tribe to receive federal money under what was the old Section 130 funding. Because of its success, the Georgia program was refunded under the current Section 121 funding. Nationally the program is a failure. Funds were allocated, but never fully appropriated. The situation therefore became very competitive and only 71 of the 558 federally recognized tribes have been able to qualify for a portion of the limited funds made available for the program.

Mr. Lang recommended that there be more input from the people we wish to serve in order to work on rectifying the above situation. This can be accomplished by:

1. Taking the programs to the people
2. Using well respected individuals from the Indian community to gather the needed data directly from the people
3. Increasing the budget of agencies like the National Council on Disability to permit them to acquire the data needed to provide justification for more comprehensive programs of assistance 
4. Eliminating bureaucratic red tape

Points related to transportation:

If the programs designed to help individuals with disabilities are going to be truly effective they need to be taken to where Indians with disabilities live. He stated that he cannot travel five miles to an office if public transportation doesn’t exist and he does not own a car. From an Indian community the distance may be fifty miles to an office.

Common Themes Across Panelists
Common themes across panelists included the need for stronger federal enforcement of civil rights laws; accessible educational opportunities about civil rights; and ensuring that all aspects of community life – housing, worship, educational conferences, employment, health care, and transportation are accessible to people with disabilities.

PUBLIC COMMENT SESSION
Individuals from the Atlanta metropolitan area introduced themselves and had questions for the panelists who presented to NCD.

TUESDAY, APRIL 7, 2007
Mr. Vaughn reconvened the Council meeting at 9:00 a.m.

PUBLIC COMMENT SESSION
Ms. Ellyn Jaeger stated that she was from Mental Health America—formerly known as the National Health Association. She spoke about mental health issues and the fact that we are in desperate need for leaders in mental health.

She said that parity clearly would help us move in the right direction. She stated that is rather sad that in terms of treating mental health we cannot recognize the brain, which controls everything, as part of the body. The fact that there is a distinction between what’s referred to as physical health and mental health is very discouraging and actually promotes a stigma and a discrimination that exist when people are diagnosed with mental illness.

She stated that early intervention for people with mental illness helps to allow them to live in their communities, recover, work, get married and have families, but none of this is possible if they don’t receive treatment.

She stated that the Council’s leadership at a federal level on these issues would be greatly appreciated. She added that the Council could help by making sure that parity passes and look at why states are as frustrated as they are, why there are so many funding silos, and why it is that mental health can’t seem to take a giant step forward, especially when we know that treatment works.

Ms. Heather Stutz stated that she represents Concerned Paratransit Riders and is a blind consumer. She would like to organize a national training campaign to teach people who are blindfolded how to get out of buildings and houses and out of their own homes safely. She also would like to speak directly to the housing community whenever they build condominium complexes to ensure that they have ramps outside the building for wheelchairs.

She stated that we need to work together as seamlessly as possible to integrate and coordinate all these systems to work together so that everyone has an opportunity to live the best life.

LEGISLATIVE UPDATE
Mr. Seifarth stated that he and Ms. Burgdorf have been sending out legislative updates to everyone to give a flavor of the legislation going on in Congress of those things that the Council has been working on.

He stated that the Council is trying to send out information on bills that have been impacting issues the Council has been focusing and that will have some movement or hearing as opposed to a bill that’s been introduced and doesn’t have committee hearings or other testimony.

He has been looking at things the Council has been focusing on that Congress has been considering, within these three parameters: Laws and issues by statute, such as things we should have impact on and input into according to our statute; areas of interest from recent meetings that the Council has been discussing; and current and future NCD research projects. 

Mr. Seifarth stated that the ADA of course is in our authorizing statute. There was a hearing and legislation last session in terms of the ADA Restoration Act. There has been a lot of discussion in the disability community and the Consortium for Citizens with Disabilities. Under education, there is the reauthorization of No Child Left Behind this year. That’s the elementary and Secondary Education Act for those who like the proper terminology, but No Child Left Behind has become the nomenclature for that.

Mr. Seifarth has the Workforce Investment Act under employment. Under the broad category of health, the Council has had a lot of discussion on mental health and veterans health issues as well as a number of pieces of related legislation.

Mr. Seifarth mentioned the emergency preparedness Homeland Security issues and all the relevant legislative activity under HR 5441 where NCD needed to have input.

The Council has been discussing the issue of foster care of children with disabilities. 

The Council has produced a report under the broad category of livable communities. In accordance with our authorizing statute, NCD needs to comment on the Developmental Disabilities Act that’s up for reauthorization this year.

Mr. Seifarth encouraged Council Members to try and schedule appointments not only with their local members from Congress, but also with staffers on committees that will be addressing issues of interest to NCD, and to look for testimony opportunities.

Mr. Seifarth stated that the Council’s report, Righting the ADA, was the topic of discussion last fall. The House Judiciary Committee had a 16th anniversary look at the ADA and talked about a lot of the issues relative to ADA. The chairman introduced the bill on ADA Restoration, and selected things from the Council’s report, but that bill died from lack of motion with only three months left.

Mr. Seifarth stated that he believes one of the Senate committees will try to have a hearing in May about employment issues relative to people with disabilities that may touch on some ADA issues, but there hasn’t been any bill introduced yet in the 110th Congress. The Council’s report, Righting the ADA, has been used as a basis for these discussions. 

ACTION ITEM
Ms. Wetters recommended that it is time the Council consider establishing a legislative committee to have a focused point where the legislative aspect of a topic can be dealt with within a committee structure.

She added that she thinks the Council has found the committee structure to be a quicker way to respond to issues than the full Council or even the Executive Committee, especially when an issue needs to be debated and deliberated and options then considered. If there were a legislative committee it would be appointed to do basically two things: assist Mark Seifarth in the legislative plan, and help implement the plan. If there were a need for the Council to be represented at hearings this team would decide whether somebody on staff could go, whether we needed to pull somebody from the relevant NCD team or whether somebody from the legislative committee could go. NCD could consider more things and attend more events, allowing NCD to be represented on a regular basis.

Motion 3
Ms. Wetters moved that the Council establish a Legislative Committee.  Passed.

TEAM REPORTS
ADA
Mr. Aponte reported that the team has three sections in its report.  They are:

• the update
• the restoration activities
• the standing projects

The ADA report, Implementation of the Americans with Disabilities Act: Challenges, Best Practices and Opportunities for Success is in the final editing process. The Council decided to release it at the same time as The Impact of the Americans with Disabilities Act: Assessing the Progress Towards Achieving the Goals of the ADA. The reports are estimated to be released in late May as part of a Hill event.             

Mr. Aponte stated that the team continues to monitor efforts to advance the ADA.

The Senate meeting tentatively scheduled for April has been postponed until May. We are currently looking for witnesses and considering former NCD member John Kemp, and Arlene Mayerson from DREDF.

Mr. Aponte stated that Professor Robert Burgdorf was asked to set aside his 2003 deliverable to focus on the Righting of the ADA project and the NCD history for the ADA anniversary celebration. These deliverables are under review by the ADA Team and will be forwarded to the Executive Committee as soon as approved by the Team.

Mr. Aponte stated that the team agreed at the San Diego meeting to accept the invitation from the technical assistance centers for the audio conference on NCD’s ADA Implementation report.  The ADA Team requested that Julie present at the conference because the ADA report is now estimated to be released in late May with the audio conference scheduled for June 12. Details of the conference will be shared with Council members as soon as they are available.

EMPLOYMENT
Ms. Wetters thanked fellow Council members, staff and contractors for their hard work and dedication and said that they are finally coming to a conclusion of an extensive employment report that they have spent the last 18 months working on.

Ms. Wetters stated that she believes the final draft of this report has been out to the full Council and responses and comments were asked to be received by April 16. There were no substantial changes to the report; therefore the minimal changes received will be incorporated.

Ms. Wetters stated that the purpose of the report as it was designed in the project team, was to look at all existing evidence on employment of people with disabilities and also seek a current state of affairs of people with disabilities and their stakeholders. Also established was a business advisory council led by Ted Childs, the expert on disability for IBM. She added that the team also has received a lot of guidance from an expert advisory panel that primarily was made up of people who have done research on disability policy in terms of employment. Their feedback was very much appreciated.

Ms. Wetters stated that the report’s structure includes12 issue briefs that are specific to the employment of people with disabilities and/or disability policy of the Council.

Ms. Wetters stated that key points from the forums and focus groups are summarized in the report, but the specific issues were discussed in small focus-group sessions made up of employers, veterans with disabilities, self-employed people with disabilities and specific focus groups of disability specialists working with the Social Security Administration.

Ms. Wetters stated that it is the recommendation of the team that the Council work to conduct 50 public forums throughout the country on the status of the New Freedom Initiative.

Ms. Wetters stated that the team is recommending there be a coordinated set of demonstration projects across many federal agencies that look specifically at employment and public policy as they relate to people with disabilities. We feel that there is a need for demonstration projects that are designed to bring employers, job seekers and agencies into the mix and not view them separately.

Ms. Wetters stated that the team wants to continue its efforts to maintain the business advisory council. It is a clear consensus at the national level that a group representative of major, mid-sized and small employers across the country is needed to advise the government and people seeking jobs on which activities work and which activities don’t work.

The team would like to work on conducting a public information campaign, continue to clarify ADA coverage (ADA Restoration Act being included), to improve workforce services and outcomes. The team also wants to modify the Social Security Disability Income system to promote work and advance self-sufficiency.

Ms. Wetters stated that the team wanted to make recommendations on long term care and support as it relates to employment and increased opportunities for self-employment for people with disabilities.

Ms. Wetters stated that the team has done the final internal report review, and the report will go out for review and publication.

Motion 4
Ms. Wetters moved to accept the Employment Team Report.  Passed.

FINANCIAL INCENTIVES
Mr. Rodriguez reported that the team is looking forward to the release of its report in July. It will be an instrumental report detailing the changes Congress needs to make, and detailing which federal agencies need to take action to make sure we implement these recommendations regarding social security, taxes, the various opportunities people with disabilities seek, as well as the barriers they have to remove.

The report is 400 pages with a full, but concise, executive summary, and includes the recommendations in specificity.

PROGRESS REPORT
Ms. Wetters stated that the Council is required by law to present an annual progress report on the nation’s progress in a variety of areas of disability policy, as well as upcoming projects, plans, and activities of the Council and other federal agencies.

The Progress Report team has completed its review of draft chapters on civil rights, technology, telecommunications, youth, welfare reform, long-term services and supports, transportation, education, homeland security and health care.

Ms. Wetters stated that the final deliverables under this report are draft chapters of housing, international affairs, statistics and research.

EDUCATIONAL OUTCOMES
Ms. Pound stated that the contractor for this project is the Educational Policy Institute. They completed ten case studies in the states and will do a review of the national and state educational outcome data sets. They subcontracted with the American Youth Policy Forum to do face-to-face interviews with identified individuals. There was some participation from members of NCD’s Youth Advisory Committee as well.

DISABILITY DATA AND STATISTICS TEAM
Ms. Pound stated that the team is working with the contractor from Cornell University. The information has been compiled into a mini report called “Framing the Issues.” The team is now looking at and evaluating the national disability performance indicator data that’s been gathered. An analysis will be made and recommendations drafted.

HEALTH CARE
Ms. Carlson stated that NCD has received from the contractor, Mia Oberlink, a final draft of conference proceedings from the October 31, 2006 presentation on creating livable communities.  Proceedings will be approved and posted following this meeting.

The team decided on the scope of work for the health care project and posted a presolicitation notice. In summary, the Council seeks to enter into a cooperative agreement with entities that have the knowledge and experience to conduct a study of the current state of health care of Americans with disabilities, paying particular attention to service members, veterans, and women with disabilities, and individuals with communication disabilities.

The full request for proposals is being developed and is expected to be posted on April 23. The team hopes to begin work in August for the one year project.

FOSTER CARE
Ms. Carlson stated that the team has been looking at developing a foster care paper. The team met on March 20 to debrief on the policy discussion and receive an update from the contractors on the status of the report. Follow-up discussion with the contractors was scheduled for March 28 with a draft report due May 18, and the final report due June 30.

YOUTH ADVISORY COMMITTEE
Mr. Rodriguez reported on the activities the committee is conducting and said that they have been very instrumental in helping the Council get the proper youth perspective on what disability and the whole transition means to them.

He stated that youth lead very productive lives and are very instrumental in leadership as it relates to young people in America.

ACTION ITEM
The YAC has prepared a paper entitled, A Perspective from Youth with Disabilities: Benefits in the World of Employment and has asked that it be introduced and adopted by the Council.

ACTION ITEM
Mr. Rodriguez recommended that the Youth Advisory Committee’s charter be renewed so that it will not sunset October 2007.

There was a lengthy discussion amongst Council members regarding the adoption of the Youth Advisory Committee report and the extension of their charter. They tabled the report and will discuss it at the Chicago Council meeting in July.

Motion 5
Seven Council members moved for approval of the Youth Advisory Committee to October 2009.  Passed.

CULTURAL DIVERSITY ADVISORY COMMITTEE (CDAC)
Mr. Aponte stated that CDAC has made numerous recommendations to present to the Council.  The issues and recommendations are as follows: 

• health disparities (prevention, parity, health care, health education)
• housing
• domestic violence
• the criminal justice system
• emergency preparedness in the deaf and hard of hearing community
• employment
• awareness raising in the community
• NCD should review advisory committee materials, including definitions of culture and linguistic competency
• a statement should be included on providing standard requirements to include the needs of people from diverse socioethnic groups that may differ from the mainstream population and describing strategies for effective outreach
• NCD ‘s strategic plan, development and implementation should include direct input from people with disabilities from diverse cultures
• NCD’s strategic plan of development and implementation should include people with disabilities from diverse cultures (interviews, community town hall discussions, radio call-ins, focus groups, and other opportunities should be used with qualified facilitators and moderators and interviewers with backgrounds similar to targeted groups and/or subgroups).
• NCD should review its internal operations and address ways to incorporate self-assessments of culturally and linguistically appropriate activities, performance improvement programs and related activities.

Motion 6
Mr. Aponte moved to adopt the CDAC report.  Passed.

INTERNATIONAL WATCH
Ms. Martinez stated that the United Nations put into force the Convention on the Rights of Persons with Disabilities. This gives the United Nations the capacity to develop human rights treaties. When a country signs and ratifies the treaty it indicates their support of the treaty.

In 2001, a process was begun to draft language to adopt a Convention on the protection and promotion of the rights and dignity of people with disabilities. This Convention passed in record time. The General Assembly of the United Nations adopted it last year. It was developed with the participation of many disability NGO’s from all over the world. The U.S., and the Council in particular, was very involved in the processes of the ad hoc committee. The committee meetings covered the period from 2001 to 2006.

Ms. Martinez stated that the United States did not sign or ratify the Convention. However, the Council is urging the President to sign. She thinks that the U.S. will be asked to support the countries that sign, especially those that ratify it, given that the Council was the leader in the world with regard to disability legislation and really has developed some rather good best practices and policies.

Ms. Martinez stated that the Council has been designated by the State Department as the “Go To” department or place when people come to this country and want to know about disability rights. Often the Council has been asked to meet with members of parliament or decision makers and policymakers from other countries.

Ms. Martinez stated that there was a conference conducted on April 9 at American University that brought together a number of U.S. based disability groups.

Motion 7
Ms. Martinez moved for the approval of International Watch Report.  Passed.       

Emergency Preparedness Panel

Greggory Mack, American Red Cross
American Red Cross is committed to the principles of the Americans with Disabilities Act and does not view disability as a reason to exclude people from Red Cross services or shelters.  The American Red Cross has clear guidance for all of its chapters regarding how to help clients who have disabilities. A recent survey revealed that the Red Cross needs to do a better job training their chapters and volunteers on disability issues. The Red Cross has two relevant publications.  “Meeting the Needs of People with Disabilities” provides guidance to their chapters about how to assist people with disabilities and how to choose accessible shelters. "Disaster Preparedness for People with Disabilities," is designed to assist people with disabilities in preparing for a disaster. 

The Red Cross has a project underway to improve the accessibility of its Web site. The Red Cross is working with HHS on a new shelter resident form to assist in selecting appropriate facilities and for ensuring the focus is on what accommodations can be made instead of presuming they can't serve people with disabilities. It was pointed out that the Red Cross does not own its shelters, so must work with owners whose facilities are not accessible. The Red Cross recently developed a course for volunteers called "Serving People with Disabilities Following a Disaster."

The Red Cross offered a session at their May 2006 annual convention entitled "Engaging and Serving People with Disabilities," featuring two chapter executives who described their successes and challenges so that other chapters can develop best practices. The session included a subject matter expert from the National Organization on Disability to frame the discussion.

The Red Cross shelters people with disabilities who are either self-sufficient, which includes people who employ assistive technologies, personal care attendants, or service animals to conduct their daily activities; or who need limited assistance in the general population environment, such as help in moving from a wheelchair to a cot. The Red Cross will provide accommodations for people with disabilities in general population shelters, but the types of accommodations that can be provided depend on the circumstances of the disaster. One example is power outages that might limit Red Cross's ability to accommodate people who use electrically powered assistive devices. Red Cross personnel can assist with some activities of daily living such as assisting someone in getting from place to place.  More advanced daily care would need to be provided by a caregiver.  Service animals have always been permitted in Red Cross shelters.  Volunteers are being reminded that not all service animals are dogs, and even when they are dogs, they are not all Seeing Eye dogs. Questions should be directed to the central point of contact for disability relations - the corporate diversity department. They can be contacted by E-mail at diversity@usa.redcross.org or by telephone (voice and TTY) at (202)303-5665.

Tim Albritton, Lead Planner, Georgia Emergency Management Agency
The Georgia Emergency Management Agency (GEMA) is a branch of state government committed to mitigation, preparedness, response, recovery, and special events. The purpose of GEMA's mission is to protect life and property and to prevent and/or reduce the negative impact of natural and manmade disasters in the state of Georgia. GEMA supports the local emergency management agencies, of which there are 161 in Georgia, two city agencies and the rest counties.  GEMA serves as the focal point for dealing with FEMA, the Department of Homeland Security, and other federal agencies on a number of issues. GEMA funnels many federal grants and programs through the local EMAs and communities. In June 2006, GEMA representatives attended a meeting in Washington, D.C. that was sponsored by the Department of Homeland Security and the Department of Health and Human Services. The title was “Working Conference on Emergency Management and Individuals with Disabilities and the Elderly.” The lessons learned from Hurricane Katrina and Hurricane Rita were still fresh. The momentum to correct the issues was very strong. Four hundred attendees at all levels of government worked together to share planning and make sure it never happened that way again. The way to accomplish that is "inclusive planning," that seeks out the viewpoints of all, not just the generic community.  Following the Washington conference, the Georgia delegates returned home and began what has come to be known as the "Disability Working Group."

One of the goals of the Disability Working Group is to open and maintain an active dialogue with organizations that represent individuals with disabilities and the elderly, to collect and disseminate best practices and to involve stakeholders in evaluating shelter viability and accessibility. Denise Quigley, from the Georgia advocacy office, which is the designated advocate for the state for the disability community, was one of the original members of the group. Other advocates and subject matter experts now include the American Red Cross, the Department of Human Resources Mental Health Division, the Americans with Disabilities Act state coordinator, Mike Galifianakis and Nancy Duncan. GEMA's public affairs office will assist in reaching out and getting the word out. The group is developing a first responders booklet and will tailor it for the state.  Mike has begun developing templates for use in shelters not only to make them ADA compatible but to prevent the whole referral to special needs shelters that has been a problem in other locations. He also is working with GEMA to incorporate disabilities into the basic core rather than as an add-on. The group will host a workshop in June dealing with special needs populations and how to integrate them into planning. The result is the development of many relationships and opportunities that might not have happened before. On April 18, Nancy Duncan is leading a training session along with the disability resource group to assist in developing a statewide training course for emergency managers and others.

GEMA is working with the Department of Human Resources Division of Public Health and others to apply for a federal grant to assist the working group in getting information out to the disability community, to collect best practices from a number of great programs around the state and provide tools to allow local governments to be better prepared. One of these programs is in Cobb County, where they have developed a center for emergency preparedness and response to work on issues for people with special needs.

Several members of GEMA and GHR are participating in ongoing meetings to develop protocols and means of assisting nursing homes and home health care providers during disasters. GEMA also is attempting to assess the educational needs of responders and officials in regards to the disability community and then locate or provide the training needed. GEMA is working to assist the local emergency managers as they work on evacuation, sheltering, and preparedness. GEMA is continually looking for new partners and friends to work with on these efforts. GEMA’s website is www.gema.state.ga.us.

Brenda Pierce, Executive Director, Center for Independent Living of the Keys
The Center for Independent Living of the Keys is located in the county with the most hurricanes. Hurricane Andrew in 1992 was larger than the entire state of Florida with a very tight, compact storm that went over south Florida and completely leveled the community where the speaker currently lives. Fifteen years later, they're still trying to rebuild. The Florida division of emergency management has a multipronged approach to dealing with emergency preparedness for people with disabilities. They've created various websites, floridadisaster.org, focusing on personal responsibility by people with disabilities, how people can make sure they are taking care of themselves, that they have a plan, and that they're ready when the storm hits. You can go to this website, create a user name and password, and walk through a series of questions that will help you create your own plan for your home, family members, pets, evacuation plans, et cetera. So they're encouraging personal responsibility, but they're also giving people the tools they need to get the plan before the storm hits. The division of vocational rehabilitation developed a similar plan that went out to all consumers in the state.

In addition to focusing on personal responsibility, the State Department, the Department of Emergency Preparedness or Emergency Management also has laid out seven key principles for emergency planning that is targeted to the local emergency management offices. One of the most important principles involves accessible disaster facilities and partnerships with the disability community. Partnerships with the media, accessible communication, and universal design also are very important.

In trying to foster partnerships with the disability community, the director of emergency management went one step further and sent out a letter to all the local emergency management offices, encouraging them to have communication partnerships with their local centers for independent living. Many CILs have used the letter to open doors to emergency managers who previously were not responsive.

The Florida disability community has done a great deal. Some of the initiatives are:
Following Hurricane Katrina, they were able to quickly organize to meet some of the needs out there. Some were financial. They also put together tractor trailers full of wheelchairs, walkers, canes, whatever was needed, and shipped those out so that instead of going to Red Cross or local emergency management people, people went to local centers for independent living for supplies and assistive technology that had been damaged or depleted by the storm.

Many people in the disability community have been giving presentations in emergency preparedness. Distribution of hurricane preparedness kits are going on in some locations but not in all. It is important to have community education, involvement with local emergency management offices, and pursuit of the idea of a statewide task force that would bring in not only centers for independent living but other disability groups around the state, including the Florida Independent Living Council, Florida Association of the Centers for Independent Living, and other groups that want to participate.

An emergency hotline in the state allows all 17 of the CILs to be in touch with each other and to be in touch with staff in the event of a hurricane that causes a center of operation to shut down.  It ensures continuity of services for people with disabilities.

Often people with disabilities don't want to evacuate. The CIL is distributing by mail each year hurricane preparedness resources, information about shelters, information about special needs registry, checklists, etc.  Every new consumer who comes into the CIL is given the opportunity to have assistance in developing a disaster preparedness plan. They also are encouraged to sign up for the special needs registry, a county initiative. CILs learn from each other. Several CIL staff are now trained in disaster response. The CILs have created a youth initiative focusing on high school students with disabilities, exposing them to the fields of science and technology.

The students visit the national weather service and are learning about the models for predicting hurricanes and the technology that's available for that, with the hopes that someday they may get involved in this field. Two of these students will be participating at the national weather service this summer.

Next steps: Better enforcement of disability rights laws. We continue to hear complaints about news programs that were giving information in the event of an emergency but that had closed captioning covered up by information scrolling at the bottom.

There should be federal-level encouragement of partnerships with nonprofits, similar to the letter written by Florida's director of emergency management.

There should be incentives, such as grants, for community partners because nonprofits cannot do this type of work without funding.

There must be accountability of federally funded entities, and mandatory training for all shelter and relief workers.

There must be inclusion of people with disabilities in the planning process. There should be a centralized resource on disaster issues for people with disabilities so that individuals or nonprofits have somewhere to go to access information. Perhaps there should be a listserv to send information to nonprofits throughout the year, so that when a disaster hits, everyone knows where to turn.  The speaker's e-mail is: BPierce@CILofthekeys.org.

Alfred Rocky Moore, Director, Fulton County Emergency Management Agency
Emergency management is the systematic approach to preparing for, mitigating, responding to, and recovering from an emergency. Preparedness and mitigation occur well before a disaster. Response and recovery happen during and after the disaster.

Emergency management is not just a government function. It should be done by households and businesses. Every family, organization, or facility should conduct its own emergency plan for recovery from disaster.

As the local government emergency management organization, Fulton County EM is developing an emergency operations plan. The guidelines for that typically change from time to time, and the local agency is mandated to follow the change.

Fulton County EM also is currently doing something called continuity of operations plan and continuity with government. The goal is to evaluate whether the government has the capability of picking up roots and continuing the essential functions of government if a disaster strikes. As a result of a national response plan review, Fulton County must enhance the planning that it is doing in that area. Fulton County asked for technical assistance from the Department of Homeland Security to assist in that effort. In addition to the continuity of operations planning, the county is having to consider pandemic flu planning—a situation in which employees are asked to stay home.

Atlanta is not the recipient of hurricanes to the level that Florida or the coast are, but does get the aftermath of those in some form of a tropical storm. Typically, what Atlanta experiences is ice storms, which can bog down the process of commuting, working, getting to and from work.

In addition to ice storms, this area is concerned about floods, tornados, other severe weather, and transportation accidents. There is a lot of “hazmat” material traveling through Georgia's interstate transportation corridors.

Suzanne Lord, Fulton County Emergency Management Agency
Planning has taken on a whole new dimension after 9-1-1 and Hurricane Katrina. A lot of the planning Fulton County did in the past was very basic. Now there are all these new dimensions to be considered, such as populations with special needs, and pet sheltering. One task is to identify and define special needs. Everyone has a different definition for special needs. One current effort is to come to an agreement on the definition of special needs for the Atlanta metro region so that all plans are talking about the same thing. It should include people who are Deaf or hard of hearing and people for whom English is a second language. Over 300 different languages are spoken in this area.

The county is working with Hear My Hands, a nonprofit organization started in Florida, with an Atlanta chapter that focuses solely on developing film and video in American Sign Language.  They are assisting in training responders and people who are Deaf or hard of hearing about emergency preparedness. Plans are underway for the development of a video for responders, dealing with the Deaf and hard of hearing community, teaching responders basic signs such as fire, evacuate, stairs, north, south, and whatever they need to know to help people who are Deaf or hard of hearing respond during a disaster. A second video on how to prepare for a disaster is planned for the Deaf and hard of hearing community. Much of preparing for disasters is a personal responsibility with the tools to plan.

Another effort underway is to establish a database of the special needs population where people can self-register and responders can know when they should, for example, take a sign language interpreter.

One final project underway is the development of brochures and CDs, in Braille and audio, about developing emergency preparedness plans. The emergency management agency's role, however, is to prepare the city or the county for disasters. They can be a great resource for information.  www.afcema.com.

Crystal Lyons, Coastal Bend Center for Independent Living, Corpus Christi, Texas
Last year, through a very small RSA supplemental grant, Coastal Bend Center for Independent Living established a project called Go Coastal. In Corpus Christi, it historically has been the city's position that everybody is responsible for their own evacuation to San Antonio, Texas, which, by car, is two and a half to three hours away. Corpus Christi has a high rate of poverty and a high rate of homes with zero vehicles that makes this position not very practical. The local Red Cross would not open shelters, hence the city's position. Advocates were unsuccessful at changing this position until Katrina.

When Katrina happened, there was a shift in thinking—that government must plan for everybody to survive. There can't be these accepted casualties. That helped get the wheel spinning. With Katrina, there were several hundred evacuees in Corpus Christi who had to be evacuated when Hurricane Rita struck.  Fortunately, disability advocates had started a dialogue with the city before then, and, when the hurricane hit, the city Office of Emergency Management called and said, "How many buses do we need for the disability population," expecting the independent living center to know. But they had to guess, calling paratransit providers for numbers.

As a result of having to evacuate people during Hurricane Rita, the city improved planning for people with disabilities and people who are transit-dependent. When identifying people who will need assistance, and when asking them to register, it is imperative that officials have some answers about what to expect during an emergency.

Ordering a certain number of buses isn't enough. Typically if there are wheelchair securements on a bus, there are only two. Greyhound buses typically do not have them. Most people don't know how to plan for that.

You can't just have special meetings once or twice a year; you really need a dedicated person at all times thinking about all disabilities, and all hazards.

Part of the grant funds went to training first responders and emergency management personnel and people with disabilities or people who represent people with disabilities. This brought together groups that, before, would never have known how to find one another. Just learning where to go or who to call for what service or information moved the planning forward a good deal.

Part of the RSA grant funds were used on providing emergency preparedness education specific to ageing and disability populations using Red Cross and National Organization on Disability literature. This included small group training, and some one-on-one training of the populations. A third part of the grant funds went toward developing a special needs registry to help in the safe evacuation of this population. Much education is needed before people will trust the government.  It is likely to take several years, but the city mayor is committed to this issue.

The final task under the grant was to ensure the disability community participates fully in all the local and regional emergency planning that goes on. We have found this to be easier than expected because disability assistance is welcome.

Building relationships is key. Go Coastal uses a tag line called "Work Together, Save Lives."  Working together are the Office of Emergency Management, the city's committee for people with disabilities, the senior services department, the transportation authority, school districts, United Way, the university, several emergency management type organizations, and a voluntary organization that assists during disasters.

Some of the training tools had to be tailored, and that is a work in progress. For example, people who are elderly often do not want to be referred to as disabled, so some wording in brochures was modified. Also, some brochures were modified to be more understandable by people with cognitive or language difficulties.

Go Coastal tells people to plan, prepare, and go. But, shelters can be far away, and some people are reluctant to evacuate.  It helps during training to explain that, if they do not evacuate, there will be no power, no water, no stores open, no transportation or emergency services, etc. It can still be difficult to get people to accept training when a threat is not imminent.

Someone asked how you begin to identify these people or who will identify them. Funding is needed to get dedicated people working on these efforts. Go Coastal was helped by the media.  Go Coastal also went to individual places, the housing authority, the local transit riders, AARP, disability-specific agencies, and to a very good outlet for reaching people—Meals on Wheels.  Volunteers can help pass out materials. Additional sources include people on Medicaid waiver programs, dialysis centers, social security offices and hospices.

In developing a registry, defining the population is a challenge. Go Coastal decided the definition of special needs are residents who may need assistance with activities of daily living in the event of disaster or emergency, including transportation, and who may have no other means to evacuate.  It can also include people who only need to be notified that they need to leave, but who need no help leaving.

In Texas, nursing homes and assisted living facilities are required to have their own plans. However, it can be useful to know what their plans are and to know where the gaps are, because, if they fail to take care of people, the emergency management system has to step in. The medically fragile population is the hardest population to work with. As Texas learned, you cannot transport some people. Some people cannot handle the long ride, for example. Corpus Christi has decided to open some shelters for these people.

One important mantra to remember is, "Nothing about us without us." People with disabilities have to be at the table, to share insight and knowledge, and sometimes to challenge people on their plans, but at the same time, to try to provide solutions. For more information about the registry, look at the Fire department Web site at www.cctexas.com.

Q:  There's a stigma that always goes along with registering people. You register sex offenders.  You register criminals, bank robbers. You register these things in your neighborhoods.  Maybe it's a perception issue. But I don't want to be labeled and maybe I'm being too sensitive to it. But I don't want to have people think, well, she's registered as something that is demeaning or wrong.  Do you know what I mean? 

Council Comment: Since the ’89 earthquake and the ’94 earthquake in California, this has been an issue for us. People with disabilities did not want to be on a registry. Instead, neighborhoods held block meetings to learn what each other's needs might be during a disaster.

Council Comment: Why have a registry unless you know you can respond to those names? Too often you may know who is on your list of people and where they are, but who is to say they're going to be there? When a disaster strikes, they might be at school. They might be at work. I'm afraid you're creating a false expectation that because someone is on this registry they are somehow safer than if they're not. And until we have some systems or some technology that can better help, I'm not sure how much you accomplish.

Council Comment: Education is such a tremendous necessity in something like this. I live in a condominium in Florida on a barrier island with a lot of affluent people near us. They don't want to go anywhere. We were told, when the wind reaches 55 miles per hour, no police, no fire, you want go to go to the bridge, please don't call us because we will not be able to respond. Let me tell you, some hearts and minds were changed; the same thing with the disability community.  People need to know what resources they cannot call upon.

Brenda Pierce: A special needs registry is written into Florida statute so each office is required by state law to maintain a registry. Some do a better job at it than others. There is a stigma. And that's why the general population shelters need to be accessible. If someone doesn't want to register, they should have the right to be able to go and check into a different shelter if they choose to. There are some incentives where we are to encourage people to register, such as the special needs shelters are the only shelters where you can register to take your pet. That encourages people to sign up for that.

In addition, people who are registered and who evacuate get assistance in returning. People who do not register do not get the same assistance. Another problem with the registry in our area is that they evacuate you three hours away from Key West. People don't want to go that far without knowing when they can return. 

Q:  Do we need to do a better job educating the planners? The further up the line you go, the less you are in touch with the community.

A: The tough decisions are made at the local level. However, often the funding, support, and policy start at the top so you have to cover all bases.

Suzanne Lord: The issue isn't education, it is communication. Where people do not want to be in a registry, some counties have worked at least to identify where extra resources might be needed during an emergency, such as non-English speaking communities, etc.

Brenda Pierce: Communication was a problem during Katrina. We got calls from people who were referred to us by FEMA because their car was damaged. But we could not find out from Washington who the FEMA people were who were referring these people. There should be a central office you can call to find out answers dealing with disability issues. For wheelchairs that were damaged, FEMA will replace some, but not all kinds. We could not find out which kinds.  We had to resort to private grants.

Council Comment: There seems to be a piece missing, and that is our engagement with the media. I would like to see DHS partner with the Ad Council, for example, to get the word out to people about how to prepare and how to make connections at the community level.

Council Comment: I used to work at a community college. We had many students who used wheelchairs. We planned for emergencies by assigning individuals to go to designated areas to help people get out of the building. When we had an emergency, the individuals went to their assigned posts, but the people with disabilities had already left the building. They didn't wait around to find out if our system worked. They hooked up with their friends and got out. They reported that all they had needed was for us to help teach them how to instruct someone on how to carry them safely down stairs. You can have systems in place, but if people don't know what those plans are, they don't have a choice as to whether to use those plans. Maybe the point of a registry should be of organizations that can get information out before an emergency and after an emergency, i.e. where the replacement wheelchairs are for those whose were damaged or who had to leave them behind. A registry of organizations can get information out ahead of time; they aren't necessarily all organizations you need to collaborate with. Just have them help get information out to people who need it.

Alfred Rocky Moore: When the Department of Homeland Security reviewed our plans, they noted our inability to notify special needs populations of an emergency, and that we couldn't report what action those who were notified were taking. We do have a reverse 911-type system, where we can call households and provide information, including, if you need assistance, do X.  But that did not satisfy Homeland Security.

Council Comment: In my area, I receive notices of town hall meetings, etc., and it is a service provided by a private contractor. Maybe Homeland Security or emergency managers at the local level could work with the private sector to come up with some solutions.

PUBLIC COMMENTS
An Atlanta citizen who is blind reported she had been in a fire, and was able to get out of the building because she was familiar with it. She observed that others panicked because they couldn't see, and suggested all people be trained to exit a building blind-folded.

A representative from the Georgia Tech Center for Advanced Communications Policy reported that they currently are doing research on a development project for people with disabilities― particularly making emergency alerts accessible.

UNFINISHED BUSINESS
Mr. Rodriguez inquired about the projected cost of the eight upcoming reports that will be released.

Mr. Quigley informed him and Council members that the cost for producing reports would be between $25,000 and $30,000, which includes printing, editing, and distribution.

Mr. Vaughn stated that between now and the Chicago Council meeting the Council should conduct a two hour teleconference to look at planning issues associated with future projects.

Ms.  Martinez suggested the Council conduct a meeting in New Orleans to stimulate the city’s economy after Katrina.

Mr. Vaughn referred the council to the memo from Mr. Quigley dated April 5, 2007 concerning the revisions to the administrative manual and distributed in the board electronic notebook.   He stated that the administrative manual was completed in December of 2004 and noted there that needs to be some consistency with executive directors signing authority since the council and the chairperson charge the director with the day to day management of the agency.  The proposed changes were all “ministerial” in nature and eliminated the counter signing of documents by the financial manager and general counsel except where required by law or appropriate internal control.  

After the short discussion lead by Mr.  Vaughn and Mr. Quigley the proposed changes to the Administrative Manual, Linda Wetters  moved and Mr. Rodriguez seconded the motion to adopt the amended Administrative Manual.  All members present voted in favor.

NEW BUSINESS
Ms. Wetters stated that the original direction of the VR report has changed from a broad evaluation of VR to a pretty specific look at transition issues.

ANNOUNCEMENTS
None at this time.

ADJOURNMENT

Motion 8
Mr. Aponte moved for the meeting to be adjourned at 4:12 p.m. and that the executive session would begin and asked that all members of the public and NCD leave the room.  Passed.

Appendix

To: The National Council on Disability
From: South Carolina Advocates
Re: Health-Care Reform and Long-Term Care Policy
Date: April 12, 2007

With regret that we cannot attend your upcoming meeting in Atlanta, we appreciate the opportunity to present these comments. This letter was drafted by a severely physically disabled lawyer and activist who is lucky enough, for the time being, to be able to pay for the assistance she needs. It is endorsed by the following South Carolina disability rights organizations:

• Protection and Advocacy for People with Disabilities, Inc.
• The Disability Resource Center, the Charleston-area ILC.
• The South Carolina Statewide Independent Living Council.

Recognizing the important role that the NCD has played in developing major policy initiatives including the ADA, we urge you to direct serious, sustained attention to the nexus between government-funded health care and disability, with specific consideration to community-based long-term care.

From its inception, the disability rights movement has recognized as a basic human rights issue the need for services in our homes and subject to our direction and control. We consider the continued incarceration of 2 million institutional residents to be intolerable. And yet the status quo is tolerated by a society that considers itself just and humane. The institutional model remains dominant.

Incrementally, there has been real and significant progress, especially since the Supreme Court’s Olmstead decision in 1999. State-by-state, advocates have managed to expand non-institutional long-term care funding beyond the point (a 25% share) contemplated by the original version of the proposed Medicaid Community Assistance Services Act. Around the country, many regulatory restrictions have been eased to allow greater flexibility and control. In South Carolina, advocates managed to secure what we believe is the most progressive Nurse Practice Act exemption in the US, allowing unlicensed personnel to work unsupervised at the direction of the person receiving services. However, we have not made it possible for the average disabled person who does not have extraordinary financial and family resources to live free in the community.

Although an Olmstead task force was appointed and worked diligently in South Carolina, the result was a report, not a plan. The process appears to be stalled.

Meanwhile, health care policy generally is in a state of flux. There is renewed discussion of universal health coverage. Some of these developments are very promising.

The New York Times recently reported big business and unions coming together to develop proposals for universal coverage that would separate medical funding from employment. That would remove a major disincentive to employing people who have (or are thought to have) extensive medical issues, and give people with disabilities much more mobility in the labor market.