The Center for An Accessible Society Disability Issues Information









Nursing home data can help with providing community alternatives, says attorney

Jan. 20, 2004 -- There are at least 267,691 disabled people, old and young, nationally, who are living in nursing homes but who want to move out, says national disability rights attorney Steve Gold. Gold's Information Bulletins, a service developed for advocates working to expand alternatives to nursing homes, explains to advocates how to find out statewide figures on the number of individuals in nursing homes who would like to live in the community, using information available from the federal Centers for MEedicare and Medicaid Services (CMS).

"Minimum Data Set (MDS) assessment forms are completed for all residents in certified nursing homes, regardless of source of payment for the individual resident," says CMS. The Minimum Data Set (MDS) is part of the federally mandated process for clinical assessment of all residents in Medicare or Medicaid certified nursing homes.

MDS assessment data are used to generate

  • Quality Indicator Reports, which present data on 24 "indicators of quality of care" -- presented at a state and national level, and
  • Active Resident Reports, which contains data for residents currently in nursing homes presented at a state and national level.
  • Community Preference Data

    "Discharge Potential and Overall Status" figures provide the numbers of individuals state by state who have expressed a preference for living in the community (data as of Dec. 30, 2003) Information as to how advocates can use this data, as well as a breakdown in counts, is available in Gold's Information Bulletin # 58

    Assistive Technology Needs Data

    "Nationally, he says, data shows that 10 percent of nursing home residents are 'rarely or never understood' " by staff, "and another 16 percent are only 'sometimes understood.' In numbers, that is about 350,000 persons."

    In Information Bulletin # 63, Gold explains how advocates can use information contained in the MDS to determine the numbers and locations of nursing home residents who need but do not have assistive technology, such as assisted speech, or even motorized wheelchairs to allow them some control over their environment in nursing homes.

    "Widespread absence of such minimal assistive technology," says Gold, "adds to the institutionalized persons feelings of powerlessness and hopelessness and of being trapped."





    The following sites contain information that may be of interest. Please bear in mind that the information at these sites is not controlled by the Center for An Accessible society. Links to these sites do not imply that the Center supports either the organizations or the views presented.
    Consumer Choice and Control:
    Personal Attendant Services and Supports in
    Report of the National Blue Ribbon Panel on
    Personal Assistance Services, August, 1999

    Directory of Publicly Funded Personal Assistance Programs from the World Institute on Disability

    "Understanding Medicaid Home and Community-Based Services: A Primer" -- from the U.S. Dept. of Health and Human Services, available at

    Information on Home & Community-Based, Consumer-Directed, and Personal Assistance Services from the Office of Disability, Aging and Long-Term Care Policy at the U.S. Dept of Health and Human Services


    How States' "Nurse Practice" Acts work against consumer direction -- from the January, 1999 Ragged Edge magazine






    Expert sources

    The Institutional Bias of Public Policy

    Abuse of seniors under-reported, says study

    Consumer Direction in Personal Assistance

    Study Validates Consumer Control's Superiority

    In-Home Services and Safety

    In-home services: Implementing the Olmstead decision

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