National Council on Disability Quarterly Meeting
Wyndham Bonaventure Resort and Spa
Fort Lauderdale, Florida
February 8-9, 2004

Members
Lex Frieden, Chairperson
Pat Pound, First Vice Chairperson
Milton Aponte
Robert R. Davila, Ph.D.
Graham Hill*
Joel I. Kahn, Ph.D.
Young Woo Kang, Ph.D.
Kathleen Martinez
Carol Novak
Anne Rader
Marco Rodriguez
David Wenzel
Linda Wetters

*Sunday only

Absent
Glenn B. Anderson, Ph.D.
Barbara Gillcrist

Staff
Ethel D. Briggs, Executive Director
Jeff T. Rosen, General Counsel and Director of Policy
Mark S. Quigley, Director Communications
Martin S. Gould, Ed.D., Senior Research Specialist
Julie Carroll, Attorney Advisor
Joan Durocher, Attorney Advisor

Guests
Julie Clay, University of Montana and former NCD Fellow
Loretta Costin, Director, Florida Division of Vocational Rehabilitation
Warren Jernigan, Florida Rehabilitation Council
Frank Shalett, People First of South Florida
Denise Payne
Bob Forlano, C.P.A.
Valerie A. Costilla, American Indian Disability Technical Assistance Center
Kathy Sills, Healthscout Rehabilitation
Carolyn Phillips, Georgia Department of Labor
Dr. Dennis Stetter, Nova Southeastern University
Lilliam Rangel-Diaz, former NCD member
Adolpho Diaz, Co-Director, Center for Education and Advocacy
Steven L. Howells, Director, Protection and Advocacy of Individual Rights Program
Marco Bristo, former NCD Chairperson
Kate P. Wolters, former NCD Vice Chairperson
Michael Morris, Senior Advisor, National Disability Institute
Steve Lineberry, Deputy Associate Director, Office of Public Liaison, The White House
Sarah Wiggins, Chair, Ticket to Work and Work Incentive Advisory Panel
Marie Strahan, Executive Director, Ticket to Work and Work Incentive Advisory Panel

Sunday, February 8, 2004

Call to Ordert
Chairperson Frieden called the meeting to order at 9:00 a.m.

Acceptance of the Minutes
Motion 1
Ms. Novak moved to accept the minutes with the following changes: page 9, section entitled Health Care, should read, “NCD has received 32 requests for proposals....” Page 10 should read “promising policy levers,” not “letters.” Passed.

Chairperson's Report
Mr. Frieden stated that NCD is having success in public relations thanks to Mr. Quigley’s efforts. We have distributed Council reports that have spawned news stories across the country. Mr. Frieden had the opportunity to be interviewed by CNN. The New York Times published an article based on the Lane news release that Mr. Quigley placed on U.S. Newswire. Shortly afterward, the Los Angeles Times and the Chicago Tribune followed suit.

The April Council meeting will focus primarily on planning, setting priorities, and the future direction of NCD. Mr. Frieden suggested that Council members brainstorm about priorities and present them at the April board meeting.

July 24, 2004, will be the celebration of NCD’s 20th anniversary as an independent federal agency and the 14th anniversary of the Americans with Disabilities Act (ADA). The planning meeting held on Saturday afternoon for this event was very productive. The meeting participants included the former chair and vice chair of the past Council as well as the chairperson doing his tenure as executive director of NCD. Ms. Gillcrist participated by telephone. NCD plans to invite 350 guests. We have already received $16,000 in pledges, toward our goal of $50,000.

The ADA Event Committee discussed a replacement of its original choice for keynote speaker (former President George Bush, who has a prior commitment). The committee is strongly considering former Senator Lowell Weicker, who was instrumental in NCD receiving its status as an independent agency and in the introduction and passage of the ADA.

Executive Committee Report
Ms. Pound reported that the Executive Committee has spent time reviewing the census document. In addition, the committee has been keeping abreast of the status of NCD’s audit.

Executive Director's Report
Ms. Briggs reported that the work plan update was included in Council members’ notebooks.

Ms. Briggs presented the following report:

• She will be conducting informal midyear staff evaluations in February.
• Planning for the April Council meeting with a focus on Native Americans with disabilities is under way.
• The Members’ Handbook is a work in progress and will be on the April agenda for discussion.

Policy Update
Mr. Rosen reported that in an effort to cut the deficit in half within five years, President Bush’s FY 2005 budget is proposed to be the start of a long-term spending clampdown that would freeze or cut domestic discretionary programs at least through 2009. It is projected that under the President’s proposed sustained rollback in federal spending, money for domestic programs would decline from $390.5 billion in FY 2005 to $385.6 billion in FY 2009, which some have calculated to be about $50 billion below what would be needed to keep pace with inflation. Congressional members in both parties have already signaled their strong opposition to the long-term shift in spending outlined in the President’s budget.

The President’s budget recycles a number of disability proposals made last year that did not get much attention from Congress. The Administration resurrected its “Money Follows the Individual” initiative that would provide Medicaid waiver services to support community-based living. However, proposed cuts would take the initiative from $1.75 billion to $500 million over five years, with no funding in FY 2005.

Health and Human Services discretionary spending would be cut by $1.1 billion. The President’s budget proposes a $1 billion increase in Individuals with Disabilities Education Act (IDEA) state grant programs for the third consecutive year. The budget proposes to consolidate certain employment and training programs authorized under the Workforce Investment Act. However, the budget proposal eliminates the Projects with Industry and Supported Employment programs that are currently authorized under the Rehabilitation Act.

Many of the Rehabilitation Act’s discretionary programs, such as Independent Living and National Institute on Disability and Rehabilitation Research, are frozen or cut. The budget proposes to eliminate the Title I, Technology Act, State Grant programs that provide $25.9 million for assistive technology. This proposal was rejected by Congress in its FY 2004 appropriations.

The budget requests $147.9 million for the New Freedom Initiative transportation projects. This is similar to what was proposed before but not accepted by Congress. No additional funding is provided for the housing choice voucher program (Section 8), targeted to nonelderly people with disabilities. The budget proposes to transform Section 8 to a “Flexible Voucher Program” that will provide block grant voucher funds to public housing agencies.

Ongoing and planned NCD priorities correlate with the priorities expressed in the President’s budget. Medicaid and Medicare, particularly respite and long-term care services, are centerpieces of the President’s budget proposal.

NCD’s research projects on health care and long-term services will yield critical information for the Administration as it considers Medicaid. The President also puts high priority on employment by way of his Jobs for the 21st Century proposal. Employment is one of NCD’s FY 2005 priorities.

The Social Security disability program, another key element of the President’s budget, is also an NCD priority that we will research this year. NCD’s educational outcomes study will be timely for the legislative consideration of special education funding.

Finally, homeland security is slated for a considerable increase in the President’s budget. NCD has an ongoing research project on the emergency and security issues under the purview of the Department of Homeland Security and other federal agencies.

Public Relations Update
Mr. Quigley thanked the members of the July 24 Planning Committee and others for their hard work in planning the event. They are Lex Frieden, Barbara Gillcrist (team leader), Pat Pound, David Wenzel, Milton Aponte, Bob Davila, and Ethel Briggs. He thanked Anne Rader and Joel Kahn for their additional support. He expressed special thanks to former chairpersons Sandra Parrino and Marco Bristo, and former Vice Chairperson Kate Wolters, for their assistance.

Mr. Quigley has been working with the Government Printing Office to revitalize NCD’s Web site. The new test page is sharper and clearer, with better navigation, and it is 508 compliant.

Finance Committee Report
Mr. Wenzel reported that NCD’s FY 2004 budget has been passed with an increase of $200,000. However, because of an across-the-board cut by Congress, NCD was cut by $19,000, leaving an increase of $181,000. He stated that we are doing quite well. When we were on continuing resolution, we were allowed to spend only a percentage of the FY 2003 budget.

The audit for FY 2003 is going well; results should be presented by the end of February. At the April Council meeting we will identify priorities for the FY 2006 budget, which will be voted on at the July Council meeting.

There was a request for proposals to solicit a new financial service provider to replace the General Services Administration. Unfortunately, all proposals came in over bid. The committee is very interested in moving NCD’s financial services to the Bureau of Public Debt.

Team Reports
Progress Report
Dr. Kahn reported that the team has voted on a preliminary format for the Progress Report. The first chapter is with Council members for their review and input. Staff is awaiting their feedback.

Mr. Rosen stated that the Progress Report will be released chapter-by-chapter to Council members for their review and input. Two executive summaries will accompany the report, one addressed to the Administration and the other to Congress.

Universal Design
Dr. Kahn reported that the Universal Design Team has run into a problem developing an industry partner. The contractor asked for a two-month, no-cost extension, which the team approved. The final report will be completed by July 10, 2004, two months later than originally scheduled.

Georgia Tech Research Institute is in the industry study phase of the project, which includes documenting factors that influence the design and development of products in each of the product lines under study (cell phones, automated teller machines, personal digital assistants (PDAs), televisions, speech recognition programs, and distance learning). The researchers have analyzed data from four of the industry partners. To obtain voice recognition data, the researchers will be speaking with several companies that use embedded voice recognition technologies in their products. For the PDA product line, discussions have been initiated with an alternate vendor that may be interested in participating in the research.

On November 17, NCD and Georgia Tech Research Institute held a teleconference with industry representatives from Microsoft, Hewlett-Packard, and IBM to discuss barriers and facilitators to the universal design of electronic and information technology.

The next phase of the study, the user phase, will use a combination of user surveys and focus groups to document consumer acceptance and use of universally designed products. The survey will ask consumers to report their experiences with the product lines selected for this study and their perceptions of the accessibility features. Most of the products needed for these evaluations have been obtained. The researchers are waiting for their internal university review board to approve the user study before pilot testing the survey instrument.

The staff and the Universal Design Team believe it is feasible to conduct the survey within our current timetable. The team has been meeting monthly and things are going well.

Health Reform
Ms. Novak reported that summaries of the Long-Term Services and Supports Study and the Consumer-Directed Health Reform Study are outlined in the meeting notebook. She gave the status of major activities of the Consumer-Directed Health Reform Study:

• The literature review (including academic, private, and government research) has been completed.
• Key informant interviews (also including all members of the consumer advisory board) were being conducted during the first three weeks of January 2004.
• Current laws and programmatic frameworks that promote consumer-directed and/or consumer-oriented health care have been identified.
• A draft of the policy and program trends section is being written.

The Long-Term Services and Supports Study has not been awarded. Packets were distributed to 35 potential bidders, but only five proposals were received. A panel of external reviewers has reviewed the proposals. A contractor should be selected by the end of this month. This is a very global, challenging, and comprehensive research project.

Ms. Novak made a presentation at the Personal Assistance Services Summit at the Interagency Committee on Disability. People from the Departments of Health and Human Services and Housing and Urban Development and other federal agencies attended.

Dr. Gould added that the individuals at the Visitors Nursing Services of New York and the Home Health Care Research Institute are the contractors for the Livable Communities Study. A draft report is due in July.

Advisory Committee Reports
International Watch
Ms. Martinez stated that International Watch had a teleconference January 15. Topics on the agenda included the following:
• Recent legislative developments regarding NCD’s recommendations in “Foreign Policy and Disability”
• The NCD meeting with officials heading up the planned Millennium Challenge Corporation
• The United Nations Working Group meeting on the International Convention

Follow-up continues on NCD’s foreign policy report. NCD staff met with Clay Lowery, the Deputy Assistant Secretary for National Debt Development and Quantitative Policy at the Department of Treasury, who is heading up the Millennium Challenge Account Working Group, and Drew Luten, Deputy General Counsel at U.S. Agency for International Development (USAID), to discuss the Millenium Challenge Act (MCA) legislation.

The MCA legislation will establish a new development agency that will tie development assistance to countries that demonstrate performance in specified areas. The legislation currently includes language that requires that a commitment to the rights of people with disabilities be shown before a country is eligible for funding under the act. NCD staff also met with Lorne Craner, Deputy Assistant Secretary for the Bureau of Democracy, Human Rights and Labor at the Department of State, to follow up on NCD’s recommendations for the Department. The committee also has requested a meeting with Administrator Natsios at USAID.

The committee is awaiting passage of the omnibus legislation, which we anticipate will include both the MCA language and the foreign operations appropriations requiring that USAID develop and implement appropriate standards for access for people with disabilities for construction projects funded by USAID. This legislation applies to all USAID-funded projects, not just those contracted by USAID.

NCD met with Senator Harkin’s staff and other leaders in the disability community on January 15 to advise on legislative priorities for 2004.

Chairperson Frieden moderated a panel on December 3, 2003, on the importance of an International Convention in celebration of the United Nations International Day of Disabled Persons. At the end of the meeting, the United Nations announced that it will conduct an external audit of the accessibility of its facilities.

On January 5-16, 2004, the Ad Hoc Committee Drafting Working Group met at the United Nations to begin drafting text for the Convention on the Human Rights of People with Disabilities. The Working Group consists of representatives from 27 countries, one national human rights institution, and 12 nongovernmental organizations. Representatives hope to submit a draft text for consideration at the third ad hoc meeting, May 24-June 4, 2004. A fourth meeting is planned for August 23-September 3, 2004. NCD sent a letter to Representative Tom DeLay in support of House Concurrent Resolution 169, which expresses to Congress that the United States should support a UN Convention on disability rights.

ADA Update
Dr. Davila stated that on December 15, 2003, NCD hosted another ADA Roundtable teleconference of national ADA experts in legislative drafting and litigation to discuss options for addressing the problematic elements of the Supreme Court ADA decisions and to discuss draft proposals for restoring ADA. The team focused on issues involving the limitations the Court has placed on damages available to ADA plaintiffs, employers’ use of a threat-to-self defense, and the relationship between ADA reasonable accommodation rights and seniority system rights.

Mr. Burgdorf is revising the legislative recommendations for restoring ADA, incorporating input from the ADA Roundtable participants. The revised recommendations will be ready for Council review shortly, after which the team will formally expand the process to obtain input from additional stakeholders.

NCD will be receiving an additional $200,000 in FY 2004 and possibly $200,000 more in FY 2005 so that the “Righting the ADA” initiative can be continued. In preparation for this additional work, staff developed a draft ADA Work Plan detailing how NCD will document the positive and negative effects of ADA, gather input from a variety of ADA stakeholders on the impact of ADA and the Supreme Court’s ADA decisions, examine federal ADA case law following the Supreme Court’s ADA decisions, establish a national dialogue to examine strategies for more effective ADA implementation, and report these findings to Congress. The members agreed to defer action on the plan to Unfinished Business.

On December 19, 2003, Mr. Rosen and Ms. Carroll met with Alexander Acosta, Assistant Attorney General for the Civil Rights Division at the U.S. Department of Justice (DOJ), and several other key disability rights officials at DOJ. They discussed the enforcement of the Civil Rights of Institutionalized Persons Act; the need for an increase in resources allocated to ADA enforcement, particularly in light of the trend of the Supreme Court to restrict the rights and remedies available under ADA; the need for revised ADA Accessibility Guidelines and access standards for public rights-of-way; the need to coordinate myriad programs and projects across federal agencies to promote the choice of community living for people with disabilities; and the importance of an international convention for people with disabilities.

NCD has convened a group of transportation experts to assist in examining transportation barriers and solutions for people with disabilities. The group consists of representatives from disability organizations, the transportation industry, and Project ACTION, which is a federally funded project that provides ADA transportation technical assistance. The group has held two teleconferences. The group has agreed to serve as an information resource for NCD as it moves forward with plans to issue a paper on access to transportation for people with disabilities.

Employment
Ms. Wetters stated that the Employment Team has done a lot to educate itself on the employment issue. The team has evaluated ways to determine the scope of the Return-to-Work study.

The original scope of the study was rather detailed and looked at all of the Social Security initiatives on employment. The team is considering a more general focus on Social Security in terms of disability in the determination process, the criterion that is used to determine eligibility.

The team will be looking at the impact of Social Security on youth transitioning from high schools into work or postsecondary education. Social Security has gone back and forth in terms of youth and their eligibility in the adult system. The team will be looking at Social Security incentives and their wraparound with poverty reduction programs, as well as the work incentives of the Office of Disability Supports.

The team discussed these issues in a telephone interview with Martin Gerry, Deputy Commissioner for Disability and Income Security Policy.

NCD is planning two research papers on employment. One report is on the numerous return-to-work efforts of the Social Security Administration. They cover adults, transition of youth, the disability determination process, and access to Medicaid, all of which are tied to the design and implementation of progress within the Social Security Administration. The second report is a broader review of employment, including obstacles to employment for people with disabilities and advances in that regard.

NCD has approved the Social Security return-to-work proposal to be completed in 2004 and the broader-based proposal to follow in 2005.

Motion 2
Ms. Wetters moved that NCD continue with its plan to complete the return-to-work piece first and the broader employment study second. Passed.

Presenter
Michael Morris, Senior Advisor
National Disability Institute
Mr. Morris shared a short bio of his experience with NCD. He stated that earlier this year, researchers were reviewing whether the compliance rates are going up or down for people with disabilities.

Advocates and activists in the disability communities are working to push to its full potential the meaning and intent of the Olmstead Supreme Court decision to expand community choices.

The following public policy developments relate to work incentive provisions:

• Return-to-work incentives
• Ticket-to-work
• Different approaches to the Social Security Administration and to the Centers for Medicare and Medicaid Services
• Strengthening Medicaid to provide greater support for individuals with disabilities and their families

Nothing defines persons with disabilities more in a local community than their economic status. Without money, wealth, and assets, an individual is powerless to pursue choices. One out of every three adults with disabilities lives in very low income households, as opposed to one of every eight nondisabled adults (NCD 1996 Report).

Lack of money is a serious problem for people with disabilities:

Sixty-eight percent say it is a problem.
Thirty-nine percent say that the lack of financial resources is the most serious problem they face (Harris Survey, 2000).

• Only 37 percent of adults with significant disabilities are participating in our nation’s workforce (National Health Interview Survey, 2000).

• Even when people with disabilities are employed, they earn substantially less than nondisabled peers, roughly 72 cents per dollar (NCD 1996 Report).

• Public assistance represents 59 percent of the total income of people with significant disabilities, compared to 8 percent of the total income of people without disabilities.

• On a national level, 1.8 million supplemental security income (SSI) recipients with disabilities between the ages of 18 and 64 have no banking relationship. Fifty percent of SSI recipients do not directly deposit their monthly checks.

• Only 4 percent of Americans with disabilities are homeowners, compared to 70 percent without disabilities.

• One-third of students with disabilities do not finish high school.

• People with disabilities are enrolled in postsecondary education at half the rate of the general population.

Asset poverty varies significantly by race and gender:

• Thirty-three percent of all American households have zero or negative net assets.
• Fifty-four percent of Hispanic households have a similar status.
• Sixty percent of African-American households have a similar status.
• For persons with disabilities, estimates are as high as 80 percent.

Persons with disabilities are:
• Less educated
• More likely to be dependent on fixed income and government benefits
• More likely to live below the poverty level
• Less likely to have assets
• Less likely to be employed full time

More than 25,000 low-income people in this country are participating in Individual Development Accounts (IDAs). IDAs are mass savings accounts that allow individuals to have a targeted goal that could result in starting a business, owning a home, or pursuing an education. The funds that an individual saves are matched by private and public institutions.

Many organizations are working to move people in poverty up the economic ladder. There are 250 community-level credit unions that provide access to financial services at very low rates.

Research is needed on financial education, financial services, and tax credits within the realm of development so that people with disabilities are not an afterthought, but are a part of the core of this new era of using tax and economic policy to drive opportunity for all Americans.

Advisory Committee Reports
Cultural Diversity
Mr. Aponte stated that the Cultural Diversity Committee (CDAC) is a major focus of NCD. Cultural diversity is increasing in this country, and its role in society needs to be addressed from a disability perspective. The committee should develop a more dynamic plan for CDAC with respect to NCD’s priorities.

Ms. Martinez stated that the staff has scheduled a teleconference on the question so that there will be reasonable discussion with NCD at the April board meeting.

Youth
Mr. Rodriguez reported that the Youth Advisory Committee (YAC) will be going through a transition. YAC will be recruiting for new members, including high school students. Kim Borowicz, a student intern from Michigan State University, is working at NCD on these issues.

YAC members have stressed interest in creating a national transitional resource that will assist students, parents, schools, and others in the community to implement the transitional requirements for the needs of youth with disabilities.

Another area of interest is gathering youth perspectives of the impact of No Child Left Behind, with a specific emphasis on youth with disabilities speaking for themselves.

Recess
The meeting recessed at 5:00 p.m.

Monday, February 9, 2004

The meeting reconvened at 8:00 a.m. Members and staff attended the opening session of the Emerging Workforce Conference, where Governor Jeb Bush was the keynote speaker.

Chairperson Frieden called the meeting to order at 9:45 a.m. Mr. Frieden acknowledged the members of the Ticket to Work Advisory Panel who joined NCD members to hear what people from the community had to say regarding employment and related issues. Mr. Frieden introduced Sarah Wiggins, Chair of the panel, who presented remarks regarding the work of the panel. Members of NCD, the panel, and guests introduced themselves.

Mr. Frieden stated that NCD is very glad to be in Florida at this gathering. He felt that this was a great opportunity for Council members to hear public concerns pertaining to disability issues. They were particularly interested in matters pertaining to employment of people with disabilities. NCD members would like to hear suggestions and issues in regard to the problems that people with disabilities face in employment, as well as any success stories.

Public Forum on Employment
The public forum consisted of individuals in Florida who shared their personal and professional experiences in the area of employment. Copies of the testimony have been placed on file.

Unfinished Business
Motion 3
Dr. Davila moved that the $181,000 increase in the FY 2004 appropriation be used to support continuation of NCD’s “Righting the ADA” program. Specifically, the increase will be used to collect information from organizations, agencies, and individuals about the actual impact of the Supreme Court ADA-related decisions on their ability to participate in employment, government services, places of public accommodation, and other publicly supported services. Documented examples of positive gains and enhanced opportunities will also be recorded to reflect a balanced progress report on ADA. Passed.

Mr. Frieden stated that Council members would like to have the following:

• A draft version of the Members Handbook before the April Council meeting so that it can be part of the discussion.

• A plan that outlines the timelines for development and dissemination of various products. Members would like to see from staff a projection with products that are coming up for Council review and the amount.

• A reference listing NCD’s administrative deadlines, including reports to Congress, Office of Management and Budget, and other federal agencies.

• A clear plan that shows Council members in relative detail the areas of responsibility of each staff person and their efforts on each of the substantive tasks they have undertaken.

Mr. Frieden introduced the new White House Public Liaison, Steve Lineberry. He expressed his gratitude to NCD for the work it is doing on behalf of people with disabilities. He thanked Mr. Quigley for the emails keeping him abreast of Council activities.

New Business
None at this time.

Announcements
Council members expressed excitement of the upcoming meeting in April, which will be in New Mexico.

Adjourname
Mr. Frieden asked if there was any further business to come before NCD. Seeing none, he adjourned the meeting at 12:01 p.m.