Lex Frieden, Chairperson
March 2004

The Bulletin, which is free of charge, and at NCD's award-winning Web site (www.ncd.gov), brings you the latest issues and news affecting people with disabilities. To subscribe or unsubscribe to the NCD listserv, send a blank e-mail to add-bulletin@list.ncd.gov or remove-bulletin@list.ncd.gov. No need to write anything in the subject line or body. To change your current e-mail address, first unsubscribe in one e-mail and then subscribe in another. Please send your editorial comments to Bulletin editor Mark S. Quigley (mquigley@ncd.gov).

NCD Celebrating 20 Years as an Independent Federal Agency, 1984-2004

New Freedom Initiative Update

On March 15, the White House released The President's New Freedom Initiative for People with Disabilities: The 2004 Progress Report, which is President George W. Bush's plan to tear down the remaining barriers to full integration into American life that many of this Nation's 54 million people with disabilities face. This Progress Report highlights accomplishments under the New Freedom Initiative since the issuance of the May 2002 Progress Report.

On April 7, the U.S. Senate Committee on Finance is scheduled to conduct a hearing, "Strategies to Improve Access to Medicaid Home and Community Based Services", to examine President Bush's New Freedom Initiative (NFI) to streamline services and funding for the elderly and people with disabilities. The purpose of this hearing is to assemble a panel of experts to describe how the proposals in NFI would work and to look at them in detail from the perspectives of everyone involved.

NCD board member Carol Novak will testify at the hearing.

The President's New Freedom Initiative was announced in February 2001 and expanded through Executive Order 13217 on June 18, 2001. The executive order directed federal agencies to work together to tear down the barriers to community living. Various departments throughout the government are partnering with states and others to provide the elderly and people with disabilities with the necessary supports to participate fully in community life.

Several components of the New Freedom Initiative are included in the President's 2005 budget. In one of the proposed demonstrations, the Federal Government would fully reimburse states for one year of Medicaid home- and community-based services for individuals who move from institutions into home- or community-based care. After this initial year, states would be responsible for matching payments at their usual Medicaid matching rate. This initiative would invest millions of dollars to help seniors and disabled Americans live in the setting that best supports their needs.

Other demonstrations included in the New Freedom Initiative would provide respite care to the caregivers of adults with disabilities and children with severe disabilities; provide community-based services for children who reside in psychiatric residential treatment facilities; and focus on increasing the recruitment and retention of direct care workers.

Legislative Update

On March 15, NCD advised the U.S. Senate of its support for the Family Opportunity Act/Dylan Lee James Act (S. 622), which would amend title XIX of the Social Security Act to offer families of children with disabilities the opportunity to purchase coverage for their children under the Medicaid program. In a letter to Senator Bill Frist, NCD stated that the relief the bill would provide is crucial to millions of middle-income families that have children with disabilities who require expensive health care.

The bill was referred to the Committee on Finance. An identical companion bill (H.R. 1811) in the House of Representatives was referred to the House Committee on Energy and Commerce, Subcommittee on Health.

On March 11, NCD released the following op-ed on the reauthorization of the Temporary Assistance for Needy Families (TANF) program, which will soon be before the 108th Congress:

It will be important that the new law establish policies that reflect both the intention and desire of people with disabilities to work and the reality that some individuals may have significant work circumstances requiring long-term assistance.

While the TANF program is not specifically directed towards individuals with disabilities, research data indicate far-reaching effects of this program on people with disabilities. The General Accounting Office numbers are startling-over 40 percent of TANF recipients have at least one physical or mental impairment or they have a child with a disability, and eight percent of TANF families have both an adult and a child with a disability. TANF's work requirements and lifetime limits to benefits, which are key elements of welfare reform, pose challenges for state and local agencies as they attempt to address the unique needs of families with individuals with a disability. These challenges must be directly addressed in the reauthorization of TANF if welfare reform is to be meaningful for a large number of TANF recipients. If TANF is to truly help people with a disabilities fulfill their potential and move to work, the proper supports must be in place and continue as they exit the TANF program.

A bipartisan team of Finance Committee Senators-Senators Smith (R-OR), Jeffords (I-VT), and Conrad (D-ND)-introduced last year the Pathways to Independence Act (S. 1523). The bill included important provisions that would assist families with a disability to successfully transition to employment. First, the time a parent spends caring for a child or an adult relative with a disability would count as work. Second, the Senate bill provides a creative formula for allowing up to six months of rehabilitative services to count as work for individuals with disabilities in need of rehabilitation for employment success. The Senate bill also includes modest language requiring states to review an individual's "personal responsibility plan" prior to sanctioning the individual for not working or not meeting other program requirements. This bill is a clear example of the distance Congress has come in recognizing the importance of disability issues in TANF.

The disability community was encouraged when the Senate Finance Committee included portions of the Pathways to Independence Act when it marked up H.R. 4, the Welfare Reform bill, last fall. Congress is now working with people with disabilities and their supporters to get the remaining critical provisions included in the Senate's version of TANF reauthorization, in particular, the provision that allows states flexibility to count more than six months of rehabilitative services as work when the individual needs more services to become employed. Under the Pathways to Independence bill, after the first six months, participation in rehabilitative services could count as work as long as the person spends one-half of his/her time in other work activities. The National Council on Disability (NCD) weighed in on this issue in 2003 with a report entitled TANF and Disability-Importance of Supports for Families with Disabilities in Welfare Reform, which outlines the unique challenges and discriminatory practices individuals with disabilities face in the current TANF program. Based on this report and the wealth of information available on the needs of TANF families and individuals with disabilities, NCD advised Congress to seize this opportunity to ensure that TANF recipients with disabilities receive the accommodations they need to join others who have been able to take advantage of the TANF program to enter the labor market.

It is time for Congress to send a strong signal to states that they have a responsibility to assist families with disabilities. This is a bipartisan issue that calls for a bipartisan solution. To provide states with the flexibility and incentives to invest in families with disabilities, Congress should incorporate in the final reauthorization bill the provisions in the Pathways to Independence Act that would help TANF recipients with disabilities break the chain of dependency on public supports.

In a March 3 letter to Senator Judd Gregg, NCD provided advice to the Senate Committee on Health, Education, Labor and Pensions on the reauthorization of the Higher Education Act (HEA). In the letter, NCD summarized its 2003 paper titled People with Disabilities and Postsecondary Education.

Students with disabilities have made significant gains in the educational arena since passage of the Individuals with Disabilities Act in 1975.

• The high school completion rate of people with disabilities increased from 61 percent in 1986 to 78 percent in 2000.
• From 1978 to 1998, the percentage of college freshmen with a disability more than tripled.
• The number of high school graduates with a disability entering postsecondary education increased from 3 percent to 19 percent between 1978 and 1996.
• Approximately 98 percent of the nation's public postsecondary institutions now enroll students with disabilities.

Although these statistics are encouraging, higher education students with disabilities continue to face considerable challenges. More than 80 percent of postsecondary students with disabilities require some assistance to manage/coordinate their educational and related services, but few universities have an adequate level of disability-related supports. Despite the fact that students with disabilities are as capable as other students of succeeding at four-year colleges, data tells us that most students with disabilities pursue postsecondary education at two-year colleges or other "sub-baccalaureate" programs and they are less likely than their peers without disabilities to complete a degree or certificate program.

Additionally, NCD's Youth Advisory Committee prepared a paper reporting real-life issues facing postsecondary students with disabilities, Students with Disabilities Face Financial Aid Barriers. The paper is based on input and perspectives obtained directly from youth with disabilities regarding recommendations for changes in the Higher Education Act.

Both documents contain crucial information for HEA reauthorization.

UN Convention Update

On March 30, the U.S. Congressional Human Rights Caucus held a briefing on the UN Convention on the Human Rights of People with Disabilities. NCD member Kathy Martinez was among those testifying. Other witnesses included Ambassador Luis Gallegos, Permanent Representative of Ecuador to the United Nations and Chair of the UN Ad Hoc Committee drafting the convention; Richard Thornburgh, former U.S. Attorney General and Vice Chairman, World Committee on Disability; and Alan Reich, President, National Organization on Disability and Chairman, World Committee on Disability.

For more information on the convention, please see NCD's UN Disability Convention-Topics at a Glance: History of the Process.

NCD Awards Contract

NCD has awarded a contract to National Cooperative Bank Development Corporation, National Disability Institute, to conduct a research study examining critical issues surrounding the configuration, financing, and delivery of long-term services and supports financing and systems reform. Current financing mechanisms will become unsustainable in the near future. Without significant reform, tens of millions of Americans will be unable to find the wide array of affordable and high-quality long-term services and supports options we all expect and deserve.

This research will focus on the following areas: (1) current level(s) and type(s) of involvement by the Federal Government in a range of long-term services and supports systems and financing; (2) current and projected future needs for long-term services and supports among people with disabilities and the elderly; (3) gaps in long-term services and supports; (4) key features of future long-term care financing and systems reforms; (5) locales that have incorporated indicators of cohesive and comprehensive reform into their policy and service systems; (6) major challenges and barriers that locales face in moving toward cohesive and comprehensive long-term services and supports financing and systems reform; and (7) promising policy levers and policy changes.

Through this research, NCD will focus its attention and resources on an impending crisis in American domestic policy.

NCD Advisory Committee Meetings

NCD will conduct two advisory committee meetings via conference call in April:

• Cultural Diversity Advisory Committee, 4:00 p.m., April 7
• Youth Advisory Committee, 12:00 p.m., April 30

For more information, please contact Gerrie Hawkins at 202-272-2004, 202-272-2074 TTY, ghawkins@ncd.gov.

NCD Launches New Web Site

On March 31, NCD launched its new Web site at www.ncd.gov, which is more user friendly and 508 compliant. It was designed by Amber McLean and the Web team at the U.S. Government Printing Office, who also maintain the site. We hope you enjoy it.