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ADVOCATING FOR deafblind adults

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Family leaders representing eleven (11) family organizations from across the United States developed a national advocacy agenda. Many of those same family leaders are continuing their advocacy efforts through the Family Advocacy Coalition Educating (FACE) for DeafBlind. We feel that this agenda expresses a common need for our DeafBlind adults, regardless of etiology.

Require States to develop a State Plan for Adults who are DeafBlind. Ensure the timely implementation of appropriate services and supports for adults who are DeafBlind for a successful transition from school to adult life, including but not limited to post-secondary education, the workforce, or other settings.  The goal is a purposeful life of their choice. The plan may include:

  1. We highly recommend that the state plan for adults be coordinated with the Special Education State Plan (initially).

    i. Justification - Our education team works hard to develop a transition plan to ease our children into adult life. The effort is lost if adult services are not in sync with that transition plan.


  2. We request that the state plan include the array of support services, to include SSPs/CNs, Interveners, and Interpreters necessary to provide information, access, and communication required.

    i. Justification - Individuals who are DeafBlind require access to their environment and facilitation of communication with people encountered in their surroundings.


  3. We propose that all states offer a DeafBlind Medicaid Waiver to adults who are DeafBlind.

    i. Justification - Individuals who are DeafBlind have unique needs and some need additional support to maintain their independence in their community, rather than live in a long-term care facility.

Below are three types of qualified personnel which are vital to many individuals who are DeafBlind:  Interveners, Interpreters, and Support Service Providers or Co-Navigators.

Intervener

Intervention for people who are DeafBlind can connect them to the world around them. It provides access to clear and consistent visual and auditory information, support for the development and use of receptive and expressive communication, and support for social and emotional well-being.

This connection to the world can be made through a person called an intervener. An Intervener is defined as a person who works consistently one-to-one with an individual who is DeafBlind and who has training and specialized skills in deafblindness. (Adapted from Interveners.org)

Related Resources

    Interpreter for the DeafBlind

    A qualified DeafBlind interpreter is adept in providing visual environmental information in addition to spoken or signed content. A qualified interpreter knows how to modify the signing space, the distance between the consumer and interpreter, adjust pacing, and is competent delivering the content in a manner which is meaningful and coherent for the individual who is DeafBlind. The interpreter also knows the importance of appropriate clothing and other essential factors in accommodating people who have various types of restricted vision.

    The DeafBlind interpreter also is skilled in working with people who use tactile signing and/or tracking. Tactile signing is a hand-over-hand method for people who receive signed information through touch. Tracking is used by DeafBlind people who have some vision but rely on understanding signed information by touching the interpreter’s wrist or forearm to visually follow their hands.

    An interpreter’s role when working with people who are DeafBlind is expanded and often includes guiding when walking from place to place, relaying visual/environmental information, note-taking, sight translation of printed materials or assisting with seating arrangements.

    Adapted from the National Task Force on DeafBlind Interpreting

    Related Resources

    Support Service Provider aka Co-navigator

    A support service provider aka Co-Navigator can be any person, volunteer or professional, trained to act as a link between persons who are DeafBlind and their environment. They typically work with a single individual, and act as a guide and communication facilitator.

    The role of a support service provider (SSP) or Co-Navigator is to provide visual and environmental information, communication access, and guiding within the physical environment, generally in community-based or informal settings. This could mean airports, train stations, restaurants, shopping, recreation and leisure sites, during health and fitness pursuits, and the wide variety of errands and community activities in which we engage in our lives. This support can also take place at home with activities such as reading mail, social gatherings, and any other activities needed by an individual in a private setting.

    Related Resources

    OUR MISSION:  NFADB exists to empower the voices of families with individuals who are DeafBlind and advocate for their unique needs.

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