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Office on Disability

Report on Constituency Expert Input Meeting—June 26, 2003

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


The Office on Disability held the first in a series of Constituent Expert Input Meetings on June 26, 2003 in the Secretary’s Conference Room at the Hubert H. Humphrey Building in Washington, D.C. Fifty-two constituent and agency representatives attended in person or joined in by conference call.1 It was designed to enhance constituent input regarding the Office on Disability’s development of its Three-Year Action Agenda.

Each participant was given time to raise issues important to their constituencies. They began by stating at least one issue, and then provided a recommendation or recommendations.2  If time permitted, the participant had the option of raising other issues. Agency representatives responded to concerns and answered questions throughout the meeting.

In order to effectively assess participant comments, the Office on Disability organized them using the domains identified in the policy document that accompanied the President’s announcement of the New Freedom Initiative (NFI),4 and the categories of Education, Research, Services, and Office on Disability Advocacy.5 The comments focused primarily on services across all NFI domains. Specifically, health services for persons with disabilities were frequently mentioned, as was the need for Office on Disability advocacy to improve access to healthcare. The need for research and education to improve the NFI domains was also emphasized through several comments. The chart below provides a visual representation of the frequency of comments and advocacy topics received at the meeting.


New Freedom InitiativeEducationResearchServicesOD Advocacy
Assistive Technology0083
Community Living031510


These comments will help in the development of the Office on Disability’s Three-Year Action Agenda, which will identify action steps to address the issues and recommendations raised by constituent experts. Future meetings will be held to obtain additional input on the seven domains and the Office on Disability’s role in helping to integrate persons with disabilities into the community.

Office On Disability
Constituency Expert Input

Meeting Summary
Action Requests by NFI Domains

The following is based on specific requests for Office on Disability actions made by constituent experts. Each action request was categorized based on its relation to the seven domains – Health, Assistive Technology, Education, Employment, Housing, Transportation, and Community Living.


  • Public and private insurers should be assessed regarding how they serve people with disabilities.
  • Evidence-based practices from public and private insurers should be promoted.
  • Private sector methods should be studied to see if they are applicable to Medicare and Medicaid.
  • Assistance and guidance for newborn screening should be promoted (e.g., implementation of Title 26 of the Children’s Health Act of 2000, and establishment of the Secretary’s Advisory Committee on Heritable Disorders).
  • Serious concern was expressed on the Administration’s Medicaid reform proposal as to its negative impact on people with disabilities due to loss of entitlement to services and the protections of the requirements of state- wideness, comparability, reasonable promptness and services designed to meet service needs.
  • The prior authorization requirement in Medicaid should be changed.
  • State Medicaid offices should receive information from CMS on the cost effectiveness of not placing exemptions on psychotropic formularies.
  • The CMS Institutions for Mental Diseases (IMD) exclusion should be addressed.
  • The Medicare co-payment should be eliminated.
  • Access to Medical Homes (AMH) should be expanded.
  • Support is needed on the integration of persons with disabilities into the same healthcare systems as for people without disabilities.
  • The home requirement for Durable Medical Equipment (DME) should be revised.
  • Understanding is needed on how to inform elected and appointed officials on behalf of constituents on policy related subject areas that impact the lives of persons with disabilities.
  • The Office on Disability should work with Substance Abuse and Mental Health Services Administration (SAMHSA) to ensure that the full continuum of substance abuse and mental health services are available to all persons with disabilities.
  • The Office on Disability should expand attention to children with special healthcare needs, which includes children with chronic illnesses.
  • The Office on Disability should work with the Maternal and Child Health Bureau (MCHB) to address childcare issues.
  • The Office on Disability should facilitate a meeting regarding Medicaid reform between CMS, constituent groups and State authority national membership organizations.
  • The Office on Disability should work with hospital regulators to provide information that informs hospitals of their legal responsibilities, vis-à-vis providing access for persons with disabilities (including people with visual, hearing, mobility, and cognitive disabilities) who may be using a variety of mobility devices, including canes, guide dogs, service dogs, etc.
  • The Office on Disability should co-ordinate the implementation of the recommendations in the President’s NFI Commission on Mental Health’s Final Report.

Assistive Technology

  • There is a need to find creative ways of advancing technology to maximize independence for persons with disabilities.
  • Solutions must be developed that allow persons with sensory disabilities to access information technology.
  • The issue of purchasing assistive technology rather than leasing it should be discussed with CMS.


  • Individuals with Disabilities Education Act (IDEA) must focus more on preparing youth to enter the workforce.
  • Caregivers should be provided with standard education/training that leads to certification.


  • Agencies should work to address barriers to employment for persons with disabilities.
  • Anti-work barriers across federal agencies must be addressed.
  • The barriers to employment faced by informal caregivers must be addressed.
  • The Administration for Children and Families (ACF) should create a demonstration project that provides medical benefits in a manner similar to the Ticket to Work Program (e.g., Temporary Assistance for Needy Families (TANF)).
  • The Office on Disability and the ACF should facilitate a meeting on how disability issues can be addressed by State TANF offices.

The Office on Disability should provide leadership in coordinating demonstrations with at least the following agencies:

  1. HHS, Office of Family Assistance (TANF);
  2. Department of Labor (DOL), Employment and Training Administration; and
  3. Social Security Administration (SSA).


  • The Office on Disability should co-ordinate efforts between the Department of Housing and Urban Development (HUD) and CMS regarding homeownership for persons with disabilities.
  • The Office on Disability should promote asset building that facilitates persons with disabilities becoming homeowners to help address the reality that many who receive Supplemental Security Income (SSI) or Social Security Disability (SSD) appear to be priced out of homeownership or rental housing.
  • The Office on Disability should monitor and advance the goals and objectives set forth in the Strategic Plan on Ending Homelessness. (
  • The Office on Disability should work with HUD to ensure that its programs are more responsive in meeting the rental needs of people who are SSI beneficiaries.


  • The Office on Disability should partner with the Department of Transportation (DOT) to help enhance DOT’s staff understanding of and response to the specialized needs of persons with disabilities.

Community Living

  • The Medicaid Community Based Attendant Services and Supports Act or MiCASSA proposal should be endorsed.
  • The Administration’s “Money Follows the Person” legislative proposal should be monitored as it moves through Congress.
  • There is a lack of culturally proficient and linguistically appropriate healthcare services for people with disabilities. The Office on Disability should work with community-based organizations to address the needs of persons with disabilities who are non-English speakers.
  • State Olmstead Plans should be monitored and regular updates provided.
  • The manner in which formal and informal care-giving support services differ across States and between rural and urban areas should be identified with the goal of discovering and sharing best practices.
  • The Office on Disability should support a funding shift from the current Medicaid and Medicare institutional-bias to one that supports increased community-based services.
  • The Office on Disability should support such consumer-directed service programs as Independence Plus, Money Follows the Person, and Cash and Counseling.
  • The Office on Disability should help the National Coalition on Self-Determination link with CMS so that the Coalition can understand how it might participate in the Real Choice Systems Grants initiative.
  • The Office on Disability should facilitate a meeting with CMS on how the issue regarding eliminating asset eligibility requirements that are barriers to receiving Medicaid home and community services can be addressed.
  • The Office on Disability needs to have a defined role in helping to address the workforce crisis in to ensure that people with disabilities can live in the community and not be inappropriately institutionalized.

1The participant list is attached as Appendix A.

2The agenda is attached as Appendix B.

3Specific constituent comments are in Appendix C.

4The NFI policy document can be found at

5The Office on Disability added the health domain to illustrate more clearly the concepts discussed in the meeting. The original domains are Assistive Technology, Education, Employment, Housing, Transportation and Community Living.