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

The Helen Keller National Center for Youth and Adults who are deaf-blind (HKNC), established in 1967 by a unanimous Act of Congress, is a comprehensive residential rehabilitation, research, and training facility located on a 25-acre site in Sands Point, Long Island, New York.

The goals of HKNC are to:

* provide specialized intensive services, or any other services, at the center or anywhere else in the United States, which are necessary to encourage the maximum personal development of any individual who is deaf-blind;

* train family members of individuals who are deaf-blind at the center or anywhere else in the United States, in order to assist family members in providing and obtaining appropriate services for the individual who is deaf-blind;

* train professionals and allied personnel at the center or anywhere else in the United States to provide services to individuals who are deaf-blind;

*conduct applied research, development programs, and demonstrations with respect to communication techniques, teaching methods, aids and devices, and delivery of services; and

* maintain a national registry in order to provide information and data regarding individuals who are deaf-blind.

HKNC can accommodate 40 trainees at a time. The most recent estimate of Americans who are deaf-blind (Watson & Taff-Watson, 1993) is 35,157, from birth to age 60. Wolf, Schein, and Delk (1982) estimated that there were 45,310 people who are deaf-blind and approximately 700,000 with less severe combinations of hearing and vision impairments. Early in its development, HKNC realized that it could never serve the entire deaf-blind population of the United States at the center. The early leaders of the center also realized that not every deaf-blind person needed HKNC's residential program. A decision was made in the early 1970's to provide financial assistance to state and private agencies (now designated "affiliates") to develop services t persons with deaf-blindness in their home states and communities.

Thirty-nine public and private agencies are presently affiliated with HKNC. Nine are receiving financial support from the center. The other 30 affiliates are 100 percent funded through their own agencies or state and local funds. Funding is seed money, provided on a decreasing basis over 5-year period. The funded affiliate agrees to make every effort to continue serving deaf-blind persons once the grant period ends.

As part of its role to enhance the ability of the state and/or local community to serve the individual who is deaf-blind in his/her own community, the affiliate shares information and combines expertise to provide or improve services for persons who are deaf-blind. While the financial support offered to the affiliate is time limited, each receives ongoing support through regular interaction with the National Coordinator of Affiliate Services and the HKNC Regional Representatives, attendance at the Annual Affiliate Meeting in New York, seminars and training offered at headquarters, and technical assistance offered by the National Training Team, placement specialists, and the HKNC Technical Assistance Center.

Affiliates reported serving a total of 3,513 people who are deaf-blind in FY 1993. What the numbers do not show are the increasing numbers of person hours needed to help people with deaf-blindness achieve and maintain a satisfactory lifestyle at home, at work, and in the community. The clientele appears to be more multiply handicapped, severely disabled persons who require more intensive, time-consuming services. The State Agency Affiliate Reports are filled with comments about interagency terms, cooperative funding efforts, and provision of training to other agencies and service providers on the needs of individuals with deaf-blindness. Reflecting national trends, the affiliates are heavily involved with transition efforts and report extensive involvement with increasing numbers of family members and "significant others" of persons with deaf-blindness. The HKNC affiliate funding has enabled these agencies to add persons with deaf-blindness to their service systems. The support of HKNC's funds and its training and professional services have allowed these agencies to develop a concerted focus on deaf-blindness.

The private agency affiliates' services range from social-recreational programs to support groups for senior citizens. Their programs and services are one effective way of meeting the Helen Keller National Center's mandate to serve deaf-blind persons of all ages to help them function as contributing members of society. Though the affiliates are predominantly adult service providers, the age range of their clientele is early childhood to over 65. The private agencies are truly representative of the services and efforts needed to serve any deaf-blind individual anywhere in the United States. The private agencies who train individuals and allied personnel at the local and state levels are another example of HKNC applying its funds to the areas where they have maximum collective and individual effect.