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Preserve our rights and programs through cross-disability coalitions and education

By Daniel Fisher, M.D., Ph.D.

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Subsidized housing, Medicaid, Medicare, SSI, and ADA are threatened with drastic reductions or elimination by the present Congress. If you want your voice heard, join or help form a state-wide, cross-disability group and educate the public and Congress about our issues. If we can work together with other disability groups, and other people who share our values of consumer/survivor involvement in policy formation, we can wake the sleeping giant of 49 million strong people with disabilities to a mighty roar. We did it in passing the ADA.

How you and your group can have a voice

  1. Coalition formation-Put your differences aside and join or form a statewide coalition of all disability groups to work on broad issues such as housing, health care, education, and ADA at the state and federal levels. Start with existing coalitions formed around specific issues. For example, in many states coalitions were formed around health care reform which are the basis for building future coalitions. Contact your local Independent Living Center, your state disability council, NEC, CCD, or Justice for All to assist in your networking.
  2. Connect with National Disability Groups.
    1. National Council on Disability (NCD)-This quasi-governmental group was established by the Rehabilitation Act to provide policy advice and direction on disability issues to the President and Congress. It has established the following priorities:
      • Development of a strategic policy for people with disabilities
      • Educating the public and monitoring the implementation of the ADA
      • Ensuring that disability policy direction is consumer-based
      • Ensuring that NCD is a cross-disability, consumer-directed group

      NCD is planning a series of town meetings to culminate in a disability summit in the fall. NEC will have a listing of these town meetings. Marca Bristo is chairperson and Speed Davis is the Executive Director of NCD.

    2. Consortium for Citizens with Disabilities (CCD)-This is an umbrella organization of over 100 consumer and provider groups. They have task forces on specific issues such as SSI and media. Paul Marchand is the chairperson. They have started a grass roots committee in D.C., (chaired by Becky Ogle, 703-836-6263 (v); 703-836-6730 (fax) and Chris Koyanagi, 202-467-5730) whose purpose is to get in contact with statewide groups, help the coalition members educate congress, and educate disability leaders about our concerns.
    3. National Council on Independent Living (NCIL)-A national network of IL centers whose goal is to assist people to live as independently as possible through consumer control and choice. There are also state-wide councils for Independent Living.
    4. Justice for All, United Action '95-An advocacy group headed by Justin Dart, 202-488-7684(v), 202-863-0010 (fax) and Becky Ogle whose mission is to quickly relay information from Washington to the grass roots and back again.
    5. National Action Coalition for Disability Rights in Housing-This is a national cross-disability coalition which works on all governmental levels to ensure that the housing rights of people with disabilities are honored and are guided by the independent living and consumer/survivor models of consumer control, consumer choice, integrated living, visiting options, and freedom from required services. They participate in the development and monitoring of private and public housing programs and policies to ensure that the needs of individuals with disabilities are met. They want to have people with disabilities on advisory boards of housing programs at federal, regional, and state levels. Contact person is Becca Baughn, 913-233-4572.
  3. Learn which program of importance to people with disabilities are threatened-It is important to learn which issues are vital to all the groups of your coalition and support them as well as your own. SSI, fair housing, Medicaid, Medicare, ADA, IDEA (Individuals with Disabilities Education Act, extends to children with disabilities the rights to equal opportunity as other children), PAIMI (Protection and Advocacy for Individuals with Mental Illness) are all threatened with reductions, and/or block granting to the states. Block granting PAIMI could be a problem because the states would be asked to protect the rights of people with psychiatric disabilities in their own state facilities.
  4. Educate your Congressperson, Senator, and their staffs-A very effective approach is to set up a cross-disability delegation to meet with your representatives locally and if possible in D.C. Phone, fax, and write them also. Personal stories illustrating the importance of the programs are compelling. Participate in local town meetings held by your representative and the administration.
  5. Promote positive media images of people with disabilities-Create cross-disability media teams in each media market to counter the negative images and promote positive ones of our movements and the programs serving us. The team could monitor local and national media and deliver our truth. If a distortion occurs we could alert coalition members to contact the office involved as well as the media sources to correct their perceptions.