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Office on Disability

Report on Constituency Expert Input Meeting—February 22, 2005

Department of Health and Human Services
Hubert H. Humphrey Building
Office on Disability Room, 637D
200 Independence Avenue SW
Washington, DC 20201


The U.S. Department of Health and Human Services Office on Disability (OD) convened a regularly scheduled Quarterly Constituent Input Meeting on February 22, 2005, in the Deputy Secretary’s Conference Room in the Hubert H. Humphrey Building, Washington, D.C. Over 40 constituent organizations and HHS agencies and offices were represented, either in person or by conference call.[1]These quarterly meetings give representatives from the national disability organizations (representing 54 million Americans with disabilities of all kinds) opportunity to be heard by HHS on key topics of concern both to the Federal government and to persons with disabilities.

Secretary Leavitt has made comprehensive health insurance for the nation a high priority and has directed attention to this issue by the Agencies and Offices of the Department, including the Centers for Medicare and Medicaid Services. The Office on Disability convened the February 22, 2005 meeting to ensure that input on this critical issue was received by the Department from constituencies with disabilities. The input meeting provided the opportunity for disability constituencies to identify specific concerns and to suggest solutions and recommendations for such a national health care insurance program.

Dr. Mark McClellan, Administrator of the HHS Centers for Medicare and Medicaid Services (CMS) joined representatives from disability-based organizations in an exchange about the current state of public health insurance for persons with disabilities, and provided information about current and future directions for the Medicaid and Medicare programs.

Office on Disability Director Margaret Giannini, MD, FAAP, opened the meeting by welcoming those in attendance. She explained the ground-rules for the meeting and posed a series of questions—with application to both consumers and providers of disability-related care and services:

  • What gaps prevent access to care for persons with disabilities?
  • What are the barriers to affordable care?
  • What does “ownership” mean when it comes to health care for persons with disabilities?
  • What elements need to be in place for health care to be effective from a consumer perspective and from a provider perspective? How are those elements measured?

Each participant was given time to raise issues important to their constituencies. They were asked to state at least one issue, and then to provide at least one recommendation that responds to the issue raised. If time permitted, the participant had the option of raising other issues.[2]


The following provides a summary of the recommendations by disability constituency organization representatives. This document also describes the observations, comments and suggestions made by CMS Administrator McClellan in response to issues posed and questions raised by meeting participants.

A more detailed discussion of the issues, recommendations, and CMS comments is found at Appendix B. That Appendix groups comments alphabetically by disability-related constituency organization

Constituency Recommendations

The content is grouped under the headings of access and continuity of care, affordability, the informed consumer, and quality of care/workforce issues.

Access and Continuity of Care

  • Federal Medicaid reform should emphasize the principles of continuity of high-quality, effective community-based care for persons with disabilities. It should include a continuum of services, promoting the broadest array of options for individual self-determination regarding care and services. (Recommendation made by multiple participants.)
  • Medicaid funding should be made available to support fully integrated, individualized, and community-based care for persons with disabilities. (Recommendation made by multiple participants.)
  • HHS should endorse the Medicaid Community-based Attendant Services and Supports Act (MICASSA) as a critical ingredient of community-based care, central to the President’s New Freedom Initiative and the intent of the Supreme Court’s Olmstead decision.
  • Respite services should be readily available for family caregivers to promote community-based living for family members with disabilities. To that end, CMS should continue to support the respite care demonstration project that helps families help family members with disabilities remain in the community for services and care. (Recommendation made by multiple participants.)
  • States should promote community-based living and an enhanced quality of life for persons with disabilities by continuing to cover optional services for both disabilities and the disorders that give rise to them under Medicaid. To that end, increased State flexibility under Medicaid should not result in reductions in the amount, duration and scope of services for optional populations, including persons with disabilities. (Recommendation made by multiple participants.)
  • Service models should be identified to better enable persons with disabilities the option to attempt work without fear of degradation or lost continuity of needed health care coverage. For example, Medicaid could facilitate continuity of health care for persons with disabilities who choose to attempt work by supplementing private insurance coverage.
  • CMS should continue the Medicare Drug Replacement Demonstration and assess its application for persons with rare disabling disorders.


  • HHS should support the creation of insurance pools to cover persons with disabilities who are uninsured but who do not qualify for coverage under State Medicaid plans.
  • Mechanisms should be developed to provide health insurance coverage for formal and informal caregivers and to ensure continuity of care for persons with disabilities who lose private insurance coverage through their family member(s).
  • State Medicaid plans and/or waivers should include coverage for persons with mental disabilities at the same rates as those for other disabilities and illnesses.
  • Medicare and Medicaid should not adopt private-sector models of coverage that do not provide equity in coverage for persons with mental disorders.
  • Rare disorders can be more rapidly brought under the definition of disability under Medicare and Medicaid to ensure that persons with rare disabling disorders have affordable and accessible care.

Informed Consumer

  • Beneficiaries should be provided with full information about their options under Medicaid to promote smart long-term decision making about their service needs.
  • Persons with disabilities should be educated about and enrolled in Part D plans rapidly and appropriately to ensure continuity of care. (Recommendation made by multiple participants.)
  • CMS should develop and disseminate Public Service Announcements to better educate persons with disabilities about their benefits under Medicaid and, as appropriate, under Part D medication coverage (Recommendation made by multiple participants). This should be accomplished with special attention to persons with developmental and intellectual disabilities.
  • Part D drug coverage for dual-eligible persons with serious mental illnesses should ensure that no change will occur in medication regimens for these individuals as a result of formulary decisions related to new generations of psychotropic or other medications.
  • The Federal government should promote increased understanding by older adults about disability issues by linking existing aging networks and programs with disability-related programs and services, perhaps by issuing an Executive Order.

Quality of Care/Workforce Issues

  • Persons with disabilities and concerned providers must be included, as required by Medicaid, as part of the decision-makers at the State level regarding the scope, content, and utility of proposed State Medicaid waivers.
  • Better options need to be brought to the table to create a better fit between Medicare and Medicaid models of health coverage.
  • To foster an environment that supports best practices, quality of care, and positive outcomes, greater program flexibility not dependent on the approval of State Medicaid waivers, should be promoted.
  • Medicaid should require providers to adhere to the concepts of good quality care at lower prices as a matter of practice, not just as a demonstration program.
  • Because States are not always able to do so, CMS should provide oversight of provider performance and results under Medicaid.
  • Reimbursement rates for community-based provider services should be reassessed and realigned to emphasize performance-based outcomes rather than current payment based on office visit and use of durable medical equipment and procedures.
  • Mechanisms should be established to promote (and perhaps reward) innovation in performance by linking opportunities for greater state flexibility to high-quality services as measured by performance indicators meaningful to persons with disabilities.
  • Medicaid and Medicare policies and practices – including State plans – should be revised to ensure that service choices by persons with disabilities, such as the choice of a particular wheelchair or other assistive device, are made based on what is best for the individual’s independence and self-determination, not based on bottom line costs alone.
  • Medicaid and Medicare reimbursement rates need to be reassessed and realigned to better provide incentives for people to enter and remain in the direct support workforce.
  • Effective tools, such as appropriate early screening, that can help reduce longer-term costs of illnesses for persons with disabilities, should be identified and utilized. The use of such tools should be part of performance measurement.

Other Issues

  • The Federal government should undertake a joint Labor/HHS project to identify best practices in employing and retaining persons with significant disabilities in the labor force.

CMS Response and Comment

Dr. McClellan responded to specific constituent concerns and questions, and described activities and programs both current and planned by the Centers for Medicare and Medicaid Services. He indicated that CMS is focusing particular attention on measuring and attaining high-quality performance and outcomes under Medicare and Medicaid. He emphasized that current community-oriented demonstration programs are a core part of Medicaid reform that can help delineate the most effective way to implement high-quality community-based care, including the concepts of “money follows the person” and continuity of care.

He observed that while solutions to problems affecting access to health care and coverage for persons with disabilities are not easy, constituent involvement and engagement are critical. This is particularly true as new policies and program direction are crafted and implemented, such as the current shift of persons with dual Medicaid/Medicare eligibility to the new Part D Medicare medication benefit program. Dr. McClellan emphasized the key role to be played by constituency organizations in helping to move Medicaid and Medicare toward cost-effective, high-quality community-based care for their beneficiaries. He observed that “We want to get them [the policy and programs] right, and each of you know what can best meet your needs.”


The input provided at this meeting is helping the OD better delineate the elements of a public health insurance program that are most critical to meet the broad range of healthcare and wellness promotion needs for persons with disabilities. It also is helping to identify key areas in which current CMS programs are working well or are not working quite as well for persons with disabilities. The overarching goal, as noted earlier, is to identify best ways to help ensure that persons with disabilities have the healthcare opportunities they need to promote both self-determination and independence in the community.

The recommendations and outcomes identified during the course of this meeting will be shared further with stakeholder HHS Agencies and offices for consideration and potential action. One of those recommendations–further education about MMA Drug Benefit implementation plan—already is the subject of action by OD and CMS. As a result of that recommendation, the May 2005 constituent input meeting will focus on that specific topic, providing participants the knowledge and information they need to help better educate the disability constituencies nationwide about this important program change.


Electronic copies of this report and its appendices as well as reports from other Constituent Input meetings are available on the Office on Disability website at

[1] The participant list is attached at Appendix A

[2] Specific constituent organization comments and those of Dr. McClellan are attached at Appendix B.