AUCD Legislative News In Brief

May 26, 2009

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Congressional Schedule

Both houses of Congress are on recess this week after a very busy schedule last week that included three day-long Finance Committee sessions on health care reform and a very moving House Education and Labor hearing on the issue of restraints and seclusion in schools that resulted in a significant amount of media attention.

Seclusion and Restraint

House Education and Labor Committee Chairman George Miller (D-CA) held a hearing on May 19 entitled, "Examining the Abusive and Deadly Use of Seclusion and Restraint in Schools."  CCD supported two parents who provided emotional personal accounts involving their own children, one of whom died as a result of a prone restraint. In a Press Release, AUCD urged the Congress and President to take swift action and pass federal legislation to ban the use of seclusion, prone restraints and all other types of restraint in schools except in emergency situations where the immediate physical safety of the student, staff, or others is threatened.  Federal legislation should also require extensive training in the use of school wide positive behavioral supports, in all teacher education programs, and as part of pre-service and in-service training for all teachers, para-professionals, and counselors. The list of witnesses and full testimony are available on the committee's website.

Earlier today, the Obama Administration held a meeting at the White House on the issue of restraints and seclusion in schools.  Disability leaders from about 25 national organizations participated.  Donna Gilles, Associate UCEDD Director of the Partnership for People with Disabilities in Richmond, Virginia and chair of AUCD's workgroup on maltreatment, represented AUCD at the meeting. 

Positive Behavioral Supports

Rep. Phil Hare (D-IL) introduced the Positive Behavior for Effective Schools Act (HR 2597) on May 22, just two days following the restraints and seclusion hearing.  This legislation was introduced last Congress but stalled in the House Education and Labor Committee.  HR 2597 amends the Elementary and Secondary Education Act of 1965 (ESEA) to allow states to allocate school improvement funds under title I of the ESEA for coordinated, early intervention services for all students, including positive behavior supports.  Services mandated by the legislation include technical assistance to LEAs, school wide programs that allow consolidation of funds to serve low-income families, counseling programs and professional development funding.  The state of Illinois' legislation regarding PBIS was brought up in the restraints and seclusioin hearing as a successful model for significantly reducing the need for restraints and seclusion.

Health Care Reform

The Senate Finance Committee has now issued three papers which contain policy options the Committee is considering for its health care reform legislation: 1) Options for the Delivery System; 2) Options for Expanding Coverage; and 3) Options for Financing.  While all are important to individuals with disabilities, the second set of options contains some of the most critical elements such as how individuals with disabilities would participate in a health care exchange, addressing health disparities, and providing long-term services and supports.  Last week the Consortium for Citizens with Disabilities (CCD) submitted comments on the options to expand coverage to the Finance Committee.  While supportive of the majority of policy options, CCD expressed concern about the limited scope of the benefits package that might be available to individuals with disabilities purchasing insurance through a health care exchange.  This coverage may not provide basic services essential to the functioning of many individuals with disabilities, such as rehabilitation therapies, durable medical equipment, orthotics, prosthetics, and other assistive devices.  CCD commended the committee on the inclusion of long-term services and supports and was very supportive of the majority of options listed, particularly the possibility of increasing the federal match (FMAP) for Medicaid Home and Community-Based Services (HCBS), attempts to reduce caps and waiting lists for HCBS in states, further decoupling eligibility for HCBS from an institutional level of need, and making improvements to the Medicaid HCBS State Plan Option.  However, CCD strongly recommended a two-prong approach of establishing a national program to finance long-term services and supports consistent with the CLASS Act which would take pressure off Medicaid and allow for needed improvements.  CCD also reiterated strong support for the Community Choice Act and urged the Committee to include this in a comprehensive health care reform package.

Health Disparities

Last week, a letter concerning health disparities for individuals with disabilities and health care reform was sent to all members of relevant House and Senate committees working on health care reform and the White House.  Over 120 national, state, and local organizations signed on the letter, including many UCEDDs, demonstrating strong support for addressing health disparities for individuals with disabilities within health care reform.           

Education Hearing

On May 20, U.S. Education Secretary Arne Duncan testified before the House Education and Labor Committee about President Obama's agenda for transforming American education in which Duncan called education" the civil rights issue of our time". This marked the Secretary's first appearance on Capitol Hill to outline the President's education goals. Secretary Duncan's testimony focused on a variety of issues such as early childhood education and improving college preparation programs and financial aid opportunities for college students. Responding to the House hearing on the use of restraints (see Seclusion above), Secretary Duncan also stated that his department intends to begin monitoring how states are using seclusion and restraint in public schools. The Secretary also said he plans to ensure that all states have clear policies in place on seclusion, restraint and other physical interventions that are used in schools for the coming academic year.

End of Life Care

Senators John D. (Jay) Rockefeller IV (D-WV) and Susan Collins (R-ME) reintroduced a more expansive, comprehensive version of their Advance Planning and Compassionate Care Act with Senators Herb Kohl (D-WI), Ron Wyden (D-OR) and Tom Carper (D-DE) as original cosponsors. This important legislation would provide the tools and resources necessary to drastically improve care at the end of life. 

According to a Finance Committee summary, the bill includes provisions to improve provider education and training about advance care planning and end-of-life care and would would establish a National Geriatric and Palliative Care Service Corps modeled after the National Health Service Corps.  Other provisions would: improve consumer information about advance care planning and end-of-life care; require portability of advance directives; provide Medicare, Medicaid, and CHIP coverage for advance care planning consultations; require the development of quality measures to assess end-of-life care; and establish the National Center on Palliative and End-of-Life Care at the NIH. 

Social Security/Work Incentives

The Social Security Subcommittee of the House Ways and Means Committee held a hearing to examine the Social Security Administration's (SSA) Employment Support Programs for Disability Beneficiaries.  The hearing focused on the implementation Ticket to Work and Work Incentives Improvement Act.  The 1999 Act established the Ticket to Work program to increase the choice of employment beyond the State VR and a Medicaid buy in option for states so that individuals would not lose their health care as they went back to work.  Witnesses included Sue Suter, Associate Commissioner for Employment Support Programs, Social Security Administration and Dr. John Kregel, Center Associate Director & Director of Research, Virginia Commonwealth University, Rehabilitation Research and Training Center on Workplace Supports and Job Retention, Richmond, Virginia.  The Consortium for Citizens with Disabilities was represented by Employment Task Force Co-Chair, Cheryl Bates-Harris, from NDRN. AUCD signed on to the CCD testimony which recognized improvements to the program since revised regulations have gone into effect in 2008 and offered recommendations for further improving national work incentives policies.  The full list of witnesses with links to their testimony are available on the subcommittee website.

Office on Disability

AUCD staff participated in a constitutent input meeting sponsored by the U.S. Department of Health and Human Services.  It was the first of the regular quarterly input meetings that was hosted by the new director of the HHS Office on Disability, Henry Claypool.  Mr. Claypool stated three main immediate priorities for the office under his leadership: 1. Community living; 2. Health care and care coordination; and 3. To be resource for all the federal agencies regarding the needs of people with disabilities.  Mr. Claypool's main role in the meeting was to introduce his guest speaker, Lee Perselay, the lead disability counsel for Sen. Tom Harkin (D-IA) on the Health, Education, Labor and Pensions (HELP) Committee.  Mr. Perselay gave overview of Sen. Harkin's disability agenda in this Congress.  He said that Sen. Harkin is always looking for new and innovative ways to assist people with disabilities but his legislative priorities for this Congress are the Community Choice Act, CLASS Act, and promoting wellness and prevention into health care reform.  He also mentioned  accessible housing and employment as general priorities.  During the question and answer period, there was significant discussion about the provisions in the Promoting Wellness for Individuals with Disabilities Act, issues related to health care disparities for people with disabilities, and how to achieve more disability training in the medical field.

National Children's Study

AUCD signed on to a Friends of NICHD coalition letter to support the President's FY 2010 request of $194.4 million to fund the National Children's Study being conducted by the National Institute of Child Health and Human Development (NICHD).

Inclusion Summit

AUCD Staff participated in an "Inclusion Summit" hosted in Washington, D.C. at the National Education Association on May 21. This summit included organizations committed to increasing awareness and resources around the inclusion of individuals with disabilities in all aspects of life. A highlight of the summit was the use of the film "Including Samuel" which is a project from the UCEDD at the University of New Hampshire the Institute on Disability. This film is an important tool and resource in the discussion of inclusive practices.