Lex Frieden, Chairperson
April 2004

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

NCD Conducts Native American Forum

On April 15, NCD conducted a public forum, Disability Matters in Tribal Communities, as part of its quarterly meeting. The forum attracted more than 120 participants from various states, local public and private organizations, and tribes to a dialogue opportunity at the Santa Ana Pueblo near Bernalillo, New Mexico. Participants used NCD's report, People with Disabilities on Tribal Lands, as a springboard for sharing examples of what seems to be working in Indian Country. Other comments, questions, and workgroup discussions touched briefly on personal stories and a broad array of government sovereignty and trust issues that affect relationships and, in turn, the provision of culturally sensitive services. Chairperson Lex Frieden recounted in his welcoming comments NCD's national mindfulness of many diverse cultures noting that "despite this reality, sometimes people in the United States forget about the Indian Nations." During the forum, people with disabilities and their families provided perspectives for refocusing attention on outreach and more inclusive practices, incorporating underserved groups in the broader disability and public policy arena.

NCD Testifies on Community-Based Services

On April 7, NCD board member Carol Novak testified before the U.S. Senate Committee on Finance at 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 was 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.

Novak's testimony is located at http://www.ncd.gov/newsroom/testimony/2004/novak_04-07-04.htm.

The following excerpts are from the committee's formal questions and NCD's responses:

Chairman Grassley:

Would you describe if and how the health care delivery system is changing to accommodate individuals with disabilities in response to these victories (ADA and Olmstead)?

NCD:

Under the ADA, it is generally believed that there is better physical access to health facilities in the United States. The Olmstead decision, however, was not about the health care delivery system, per se. In 1999, the United States Supreme Court held in Olmstead v. L.C., 527 U.S. 581 that, under the Americans with Disabilities Act (ADA), undue institutionalization qualifies as discrimination by reason of disability and that a person with a mental disability is "qualified" for community living when the state's treatment professionals have determined that community placement is appropriate, the transfer from institutional care to a less restrictive setting is not opposed by the individual, and the placement can be reasonably accommodated, taking into account the resources available to the state and the needs of others with mental disabilities.

The plaintiffs in Olmstead were the "victims" of the same type of institutional medical/health care bias in the Medicaid system that the Senate Finance Committee is trying to address by virtue of its April 7, 2004, hearing. It is not the "health care delivery system" that lies at the heart of this hearing, but rather, it is the long-term services and supports system that promotes community integration, independence, and individual choice that is changing and in need of more improvement such as that proposed by MiCASSA and the Money Follows the Individual Rebalancing Demonstration.

Chairman Grassley:

In your testimony, you describe the challenges inherent to the current system. For example, services that are essential to a quality of life in the community--affordable housing and accessible transportation--are often fragmented between Federal agencies. As home- and community-based services become more readily available, what can be done to improve coordination and promote independence for individuals with disabilities?

NCD:

There are both short-term and long-term strategies to be considered to improve coordination and promote independence for individuals with disabilities. Some of the short-term strategies for consideration are listed above as NCD's response to question #2 from Chairman Grassley. The short-term strategies includes: (a) (re)constituting relevant Federal interagency initiatives such as the Interagency Committee on Community Living with sufficient resources and the authority to accomplish or compel coordinated planning and implementation; (b) doing everything possible to encourage states not to make budget cuts that would negatively affect their Olmstead initiatives; and (c) CMS providing additional technical assistance to states on ADA Title II requirements and sharing exemplary state Olmstead plans.

One long-term strategy idea that NCD currently is reviewing internally involves the concept of an Agency on Disability. Such an entity might be charged with administering the combination of long-term support services, accessible housing, accessible transportation, employment supports, and assistive technology that people with disabilities need in order to live, work, and participate successfully in their communities.

An Agency on Disability might enable a more cost-effective use of taxpayers' money by eliminating redundant bureaucracies, cost-shifting, and compartmentalized budgets. The following is an example of how compartmentalized budgets are not cost-effective: A person with quadriplegia is at high risk for pressure sores from sitting in the same position all day. A wheelchair with a seat that can be tilted to different positions during the day can greatly reduce this risk. However, most state Medicaid DME (durable medical equipment) department budgets cap the cost of a wheelchair at well below the cost of one with the tilt seat--despite the fact that the cost of such a wheelchair is substantially less than the cost of hospitalization and treatment for a pressure sore. This happens because the DME budget is separated from the acute care budget, so the benefit to the overall Medicaid program budget is ignored and overall costs to Medicaid escalate.

In addition, the separate funding streams and administrative bureaucracies for each Medicaid home- and community-based waiver, intermediate care facilities, assisted living facilities, and nursing homes make it extremely difficult for an individual to transition from one model of long term services and supports to another. Cost-shifting among various disability programs also occurs frequently, causing delays in service provision that can be life-threatening to consumers and result in greater costs to taxpayers because when an individual's heath care needs are not addressed in a timely way, health often deteriorates.

Creating an Agency on Disability that views the whole individual and oversees a comprehensive budget for long-term services and supports, acute care services, housing, transportation, employment, and assistive technology might result in more productive lives for people with disabilities and more cost-effective use of tax dollars. An additional benefit could be that under a comprehensive Agency on Disability, collecting and analyzing these essential data might be more effectively and affordably accomplished.

We intend to continue our consideration of this type of long-term strategy, as well as others, during the remainder of the fiscal year and will keep you apprised of our further thoughts and any recommendations on this issue.

Foreign Policy Update

On March 29, NCD met with Administrator Natsios at the United States Agency for International Development (USAID) to discuss NCD's foreign policy report and the recently enacted legislation requiring USAID to implement its 1997 disability policy in Afghanistan and develop standards for construction that allow use by people with disabilities. Administrator Natsios agreed to include disability language in all of USAID's requests for proposals and requests for applications. USAID also held a meeting at NCD to receive input from stakeholders on the development of the required access standards and is currently revising its guidance on this issue as a result. A follow-up letter with recommendations to Administrator Natsios can be found at http://www.ncd.gov/newsroom/correspondence/2004/natsios_04-28-04.htm.

HHS Releases Child Abuse and Neglect Statistics

On April 1, the beginning of Child Abuse Prevention Month, the U.S. Department of Health and Human Services (HHS) released 2002 statistics from the National Child Abuse and Neglect Data System.

An estimated 896,000 children across the country were victims of abuse or neglect in 2002, according to HHS. The statistics indicate about 12.3 out of every 1,000 children were victims of abuse or neglect, a rate slightly below the previous year's victimization rate of 12.4 out of 1,000 children.

The data show that child protective service agencies received about 2,600,000 reports of possible maltreatment in 2002. There were 896,000 substantiated cases of maltreatment of children--the majority of which involved neglect. About 1,400 children died of abuse or neglect, a rate of 1.98 per 100,000 children in the population.

The rate of child neglect and abuse in 2002 was about 20 percent less than the rate in 1993, when maltreatment peaked at an estimated 15.3 out of every 1,000 children. As recently as 1998, the rate was 12.9 per 1,000 children. During the past three reporting years, the maltreatment rate has been fairly constant. Rates for 2000, 2001, and 2002 were 12.2, 12.4, and 12.3, respectively.

President Bush's fiscal year 2005 budget proposal for HHS would double funding for two critical child abuse prevention programs. For the Basic State Grant Program, the funding would increase from $21 million this year to $42 million in fiscal year 2005. This program provides funds for states to improve their child protective service systems.

For the Community-Based Grants for the Prevention of Child Abuse and Neglect, funding would increase from $32 million this year to $66 million in fiscal year 2005. The additional funds would enhance states' ability to investigate reports of abuse and neglect, to reach more at-risk children and families with prevention services, and to provide additional types of community-based prevention services, including home visiting, parent education, parent support, respite care, outreach and education, and other family support services.

In addition, the President's fiscal year 2005 budget proposal would fully fund the Promoting Safe and Stable Families Program at its authorized level of $505 million--an increase of more than $100 million above the amount appropriated by Congress for fiscal year 2004. This program supports a wide array of services to support, strengthen, and preserve families at risk for abuse or neglect.

As part of HHS's fiscal year 2004 budget request, the Bush Administration proposed a new approach to protecting children in the child welfare system. Under the plan, states and tribes would have the option of using some money now designated solely for foster care to support a range of abuse-prevention services and programs. The proposal provides the flexibility and sustained financial support necessary to build innovative programs for children and families aimed at preventing maltreatment and removal from home.

The full report, Child Maltreatment 2002, is available at
http://www.acf.hhs.gov/programs/cb/publications/cm02/index.htm.

IDEA

According to published reports, the bill reauthorizing the Individuals with Disabilities Education Act (IDEA) (S. 1248) may reach the Senate floor in early May. Among other things, the bill would revise programs and reauthorize appropriations through 2009. The bill makes several improvements to IDEA that will result in students with disabilities meeting higher standards and achieving greater educational results. The House companion bill is H. 1350.

For more information on the reauthorization, go to http://labor.senate.gov/, http://edworkforce.house.gov/, http://www.dredf.org, or http://www.ncd.gov/newsroom/reauthorizations/idea/idea.htm.

UCP and The Arc Collaboration Publications

UCP (also known as United Cerebral Palsy) has joined forces with The Arc of the United States in establishing the Public Policy Collaboration. This collaboration focuses on legislative and legal supports to improve the lives of individuals with disabilities and their families. The Public Policy Collaboration staff interact with Congress and the Administration to meet the goal of improving the lives of people with disabilities and their families.

The collaboration publishes a weekly newsletter, Capitol Insider, which provides brief updates on current legislative or executive branch events that affect people with disabilities and their families.

The collaboration also publishes a monthly Washington Watch that provides in-depth news and analysis on disability policy from Washington.

For more information, go to http://www.ucp.org/ucp_general.cfm/1/8.