The Helen Keller National Center affiliate program - services for the deaf-blind - Deaf-Blindness

American Rehabilitation, Summer, 1995 by Rod Ferrel, Dick Carlson, Janis Friend

Another way of inviting involvement was to identify organizations and people who that should be represented, with consideration given to "who you know." It has been found that personal/professional relationships enhance the likelihood that people will become involved. It was also discovered that, when developing a strong interagency team, it is best to start with a small core group of people who will actively participate, and to subsequently add members from the ranks of those who become involved in the provision of services to a particular individual. As the group evolved, members of the team recruited other appropriate individuals. It is also important to add that, at the beginning of the HKNC Affiliateship, agencies were identified whose services would be necessary to provide adequate services to the wide spectrum of people who are deaf-blind. A letter was sent to a keyperson in each agency or program, followed by a personal visit in which the purpose of the affiliateship was explained. Emphasis was placed on the need for interagency involvement and how those services provided by their particular agency would be beneficial.

Once the core members of the subcommittee were in place, a schedule of quarterly meetings was set. A concerted effort was made to educate the group about deaf-blindness, service needs for individuals who are deaf-blind, and resources needed for those services. This effort included expertise provided by the Regional Representative for Teaching Research Assistance to Children and Youth Experiencing Sensory Impairments (TRACES) and the Regional Representative for HKNC. Following this, overviews of the DBIP Transition Program, the Personal Futures Planning Project, and the HKNC affiliateship were provided to the group as well as consumers reporting on those issues which are important to them. Based on this information, the group identified and prioritized issues related to the provision of quality services to people with deaf-blindness. Those issues determined to be most urgent and the efforts of the interagency team to address them are:

* Under funding for needed services, especially community residential/supported living arrangements. Most members of the sub-committee were active in working for a supported living bill which passed the last legislature as a result of statewide efforts of advocacy and consumer groups.

* Consumer-driven advocacy. Several members of the subcommittee helped to obtain funding for two consumers to attend the National Conference on Deaf-Blindness in Washington, DC, in March 1992 and have provided support for two statewide conferences for individuals with deaf-blindness. As a result of these conferences, regional support groups have been developed to address the need of individuals for more interaction with others who share their specific needs and experiences. Three support groups are active at this time, with plans for two more in the immediate future. These groups focus on developing consumer leadership. Following the most recent statewide conference, a group of consumers started meeting to develop a statewide organization for persons with deaf-blindness to be affiliated with the American Association of the Deaf-Blind (AADB). Several consumers obtained financial support to attend the AADB national conference in June 1994. The interagency subcommittee was active in obtaining this support.