The Helen Keller National Center affiliate program.

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.

Two HKNC affiliates - the Michigan Commission for the Blind and the Kentucky Department of Vocational Rehabilitation - have developed quality programs of service to their deaf-blind citizenry. Their reports are included here because they represent and describe the positive results of combining the HKNC expertise, funding , and support to enable traditional state agencies to serve persons who have been traditionally absent from the rehabilitation system, or, at best, underserved. HKNC affiliate funds have supported the statewide consultant positions of Dick Carlson (Michigan) and Janis Friend (Kentucky), and the Affiliate Network and consultation available from the center's various components have assisted them to develop their unique programs. Their reports follow. Michigan's Integrated Program: A Mutual Effort by a VR Agency and Community Mental Health Agencies Using the Intervenor Concept

In Michigan, the State Mandatory Special Education Law mandates that students may stay in the school through age 2-5. As a result, the adult service delivery system is just now experiencing the influx of former students most severely impacted by the rubella epidemic of the 1960's.

The Michigan Commission for the Blind (MCB) his taken a lead role in creating viable service options for this population. This effort was initiated by the agency's vocational rehabilitation (VR) program and staff of its former Title VII, Part B, Independent Living Program of the Rehabilitation Act, as amended.

Most of these people will be considered developmentally disabled by the mental health service delivery system, which has a vested interest as well. Indeed, it serves as the last safety net within the human service system.

The Michigan effort has taken the funding and service delivery process of Title I of the Rehabilitation Act, as amended, merged that with the expertise available in the agency's former Title VII, Part B, Independent Living Program, and, using mental health state and local funds to capture federal VR funds, established a one-on-one intervenor-based delivery system for adults who are congenitally deaf-blind and recently departed from the educational system.

Benchmark data and progress per individual is gathered using the Functional Skills Screening Inventory (FSSI). This instrument provides a functional skills deficit list per person, thus providing target areas for the Inter-agency teams (I-teams) to address on a monthly basis. Further, the FSSI is administered every 6 months to provide a horizontal picture of the person's progress over time.

A second major tool used in the delivery service system is the intervenor. This is an individual who must:

* have sign language skills that exceed those of the targeted person with deaf-blindness;

* have a significant degree of empathy (i.e., the ability to imagine and sense the cues their student is receiving from the outside world and then to interpret them via a communication system that will allow the person with deaf-blindness to better understand those cues);

* must not be afraid of the person who experiences deaf-blindness (i.e., must be able to accept and send tactile signing, experience physical contact with the student, and have the patience to outlast tantrums; and

* have the innovativeness to try multiple approaches to any specific task.

The third major tool is the I-team, which consists of the VR counselor from MCB's Deaf-Blind Project, the intervenor, the community mental health case manager, a parent and/or group home manager, the day program representative, and the individual with deaf-blindness. These persons meet monthly to review progress made in the previous 30 days and to develop a training prescriptions for the forthcoming 30 days.(1)

After just 2 years, the program has shown unique progress per individual, as measured by the FSSI and subjective observation. To date, competitive employment placements have been attempted with only two persons with deaf-blindness: the first was placed as a bench worker, assembling roller bearings for patio doors. This was a five-step assembly process. The individual exceeded production of hearing-sighted coworkers hired off the street. However, with the slowdown in construction, the plant was forced to close. He was tried at the more traditional fastfood placement site. This effort was not successful due to communication problems at the worksite, as this person has minimum expressive skills in any format. It must be noted that this individual is now in a supported independent living program, maintaining his own apartment, preparing meals, and performing household chores. The I-team is currently seeking further vocational placement for him.

The second person with deaf-blindness was placed in a medical facility kitchen via supported employment. Even though she had improved dramatically from the time of referral to this first attempted placement, she did not have the skills to perform competitively in this arena. A second placement was attempted at a local newspaper, where she placed inserts in newspapers. This effort was not successful due to negative behavior problems on the job. It is the I-team's feeling that we were premature in both these vocational placement efforts.

Obviously the jury is still out on this service delivery process used within the confines of a VR effort. We have shown however, the giant strides that can be made in a person's total overall functioning level via this service delivery method. The program has accomplished the following:

* It has allowed the VR counselor to make valid decisions regarding the applicant's ability to benefit from VR services.

* It has provided the VR counselor a far better assessment of the person's skills, vocational potential, and vocational direction.

* It has enabled the system to provide the intense one-on-one observational and teaching environment wherein many of the positive hidden skills of the individual can be recognized. These skills are usually hidden by the individual's lack of language skills.

In the absence of the Intervenor Program, the individual would be served by the traditional delivery systems available. Many of the systems that have been involved in this process to date acknowledge a new appreciation and understanding for the individual with deaf-blindness and his/her skills as a result of the Intervenor Program.

The direction of this program is threefold:

* Expand the perspective of the VR program to include these congenitally dual sensory-deprived individuals.

* Improve the other existing systems responsible for services to this population by helping them better understand this unique population.

* Alert the overall service delivery system that, with minimum changes in their service system and staff skill development, the quality of life of this constituency can be greatly enhanced to the point of supported independent living, supported employment, and beyond.

Kentucky Affiliateship with

HKNC

The Kentucky Deaf-Blind Intervention Program was set up in the mid-1970's to address the educational needs of the birth to 21-year-old deaf-blind population. This included a transition component that worked with adult service providers to put in place those services needed by the individual after he/she aged out of school at age 21. As there are no mandated services after school age for people with disabilities, many individuals left school to sit at home or in institutions because they did not meet the criteria for services from the traditional VR delivery system. Some individuals with hearing and vision problems who did meet those criteria were served and frequently went on to become successfully employed. Many later reentered the system due to decreasing vision and/or hearing which led to problems on the job and in their personal lives. Their lack of successful experiences is attributed to a system that was not easily accessible to persons with their unique disability constellation.

In fulfillment of the grant requirements for the Deaf-Blind Intervention Program (DBIP), an interagency advisory committee, the Deaf-Blind Steering Committee, was established. This committee consisted of two components; a subcommittee to address early childhood services; and a subcommittee to address the transition years (traditionally, 16-21). In recognition of the above mentioned deficits in service delivery to individuals over age 21 who are deaf-blind, the Transition Subcommittee applied to the Helen Keller National Center for funding to establish an affiliate position to work closely with the transition program and address the needs of individuals who are already out of school. In addition, this subcommittee applied for and received a Personal Futures Planning (PFP) grant and became advisory committee to both these programs in addition to the transition component of DBIP. Both the PFP project and DBIP were funded to serve individuals up to age 21, after which it became the responsibility of the HKNC affiliate. At this point, many of the original members of the subcommittee left with the feeling of a task completed and well done.

The immediate task of the transition coordinator, the PFP coordinator, and the new HKNC affiliate was to put an effective subcommittee in place that would be representative of the individuals and families being served and would include those agencies, programs, and facilities that would be instrumental in providing those services. The present members of the subcommittee were asked to continue or designate another person to attend in their place. Some members opted to continue themselves, while others designated someone. Usually this was a person who worked under them, as the original members tended to be administrators in various agencies. As a result, the subcommittee membership contains a good mixture of decisionmakers and people who have hands-on experience with persons with severe disabilities. Other members have been added to the subcommittee, primarily from the ranks of those service providers who have participated in provision of services to a particular individual.

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.

* Lack of meaningful day programs or employment opportunities for persons who are deaf-blind. There has been some success in obtaining supported employment services for persons who are deaf-blind. Recently, a teleconference on Supported Employment for Persons who are Deaf-Blind was televised in Kentucky through the cooperation of the Deaf Services Branch of the Department of Vocational Rehabilitation (in which the affiliateship position is housed) and the Supported Employment Branch of DVR. This effort brought together 40 people representing supported employment providers and rehabilitation counselors serving individuals who are deaf or blind.

* No system in place to provide funding for services to persons over 21 who are developmentally disabled but not mentally retarded. This is an ongoing struggle in Kentucky, as it will require a change in the service delivery system of mental retardation and developmental disabilities. A need exists to change the state law which requires those resources to be used for persons with mental retardation but does not address the needs of those developmentally disabled individuals who are not mentally retarded but require need the same level of support.

* Community awareness and consumer isolation. This issue is also being addressed by the previously discussed consumer conference and support group efforts.

In October 1992, about 18 months after the beginning of the affiliateship and the first meeting of the new interagency subcommittee, the group had a planning retreat to provide direction. It was important to ensure that the group maintained active involvement and did not simply become a group to which the three programs reported "what was happening." The HKNC Regional Representative was called upon to lead this meeting.

There were two major outcomes of this retreat.

The first was a change in the name of the committee to reflect its expanded role. The name "Transition Sub-Committee" did not indicate its involvement with individuals who are deaf-blind over age 21. As the affiliateship serves primarily that population, it was felt to be important to have a name that shows this involvement. The name Expanding Horizons Committee was chosen, as it also reflected the role of the group in the expansion of services and opportunities for persons who are deaf-blind in all aspects of their lives. Even though the committee retained its identity as a subcommittee of the Deaf-Blind Steering Committee, it felt it had grown beyond the limits of maintaining only that identity.

Second, it was decided to apply for a technical assistance grant from the Helen Keller National Center-Technical Assistance Center (HKNC-TAC) to provide Interagency Collaboration Training for Transition Services for Youths with Deaf-Blindness. This effort was to be connected with the statewide Transition Project, funded through an OSERS grant, and facilitated through a State Interagency Transition Council. This council includes most of the same agencies represented on the Expanding Horizons Committee. The HKNC-TAC grant requires the setting up of state, regional, and local teams to use a case study model to address the needs of transition age students who are deaf-blind. The state team is in place and the targeted regions have been identified. This effort will also involve the Systems Change Project at the University of Kentucky, which works with five school systems serving deaf-blind students.

The last of three State and Local Team Training Workshops under this project will be completed in early October 1995. Seven interagency teams participated from various regions of the state and represented a cross section of Kentucky's population. The goal for this undertaking was the training of service providers across the state whose involvement is necessary for the successful transition of students with deaf-blindness, including those with additional disabilities, into community-based employment. Even though the focus of this training is on students who are deaf-blind, the concepts apply to students with a wide range of severe disabilities and promote their inclusion in the transition process. In addition to quality of life issues for the students, this training also addresses issues related to the provision of training to service providers, community awareness, isolation of consumers, and service delivery. Indeed, most of the concerns identified and prioritized by the Transition Subcommittee were addressed.

This project will continue with the establishment of regional interagency teams composed of service providers, family members, and consumers that will meet regularly within each of the four regions of the state to address the needs of individuals who are deaf-blind. Activities of the regional teams will include updates, sharing of information regarding technical assistance provided, case studies, problem solving, and advocacy. Problems that the regional team cannot solve would be passed to the state team to be addressed on an administrative level.

Represented on the interagency committee that applied for the HKNC affiliateship grant were both the state rehabilitation agency and the state agency for the blind, as both recognized the need for support for their counselors in working with people with both vision and hearing impairments. When the grant was obtained, it was with the understanding that the affiliate would provide support for both agencies. Even though the position is housed with the general agency, under the Deaf Services Branch, and receives direct supervision from the Program Administrator for Deaf and Hard of Hearing Services, it is truly an interagency position and the affiliate works equally with counselors from both agencies. The primary function of the affiliate is to provide consultation, technical assistance, and coordination of services to individuals who are deaf-blind, their family members, and any agency, facility, and program serving someone who is deaf-blind. This has invited involvement of the affiliate with not only a number of state agencies and programs, but with private service providers and residential facilities as well.

Referrals to the affiliate typically take one of two forms. Sometimes a call comes in from a facility or agency, other than a rehabilitation program, requesting assistance in serving an individual who is deaf-blind that they are either serving or who has been referred to them. The affiliate then makes a visit to meet the individual and person(s) who make up his/her support system. Depending on the situation, this may be a home visit, a visit to a residential facility, day program, employer, etc. Prior to the visit, the affiliate will determine if that individual is a client of either rehabilitation agency. If not, during the visit there is usually a determination as to whether or not referral to a rehabilitation program is appropriate at that time, and, if so, which agency could most appropriately serve the person. If the individual is already a client, the affiliate will contact his/her counselor prior to the visit and invite their involvement. If diagnostic information is available, the affiliate will try to obtain a copy prior to the visit in order to have as much knowledge as possible about the person.

The referral may also come from a rehabilitation counselor who is serving or has received a referral on a person who is deaf-blind. This counselor may contact the affiliate who will provide whatever assistance the counselor requests. The counselor may want information on evaluation methods, assistive devices, job accommodation, service needs, and resources. Because of the time required to serve one individual who is deaf-blind and the large caseloads carried by most rehabilitation counselors, the affiliate will try to facilitate services for the individual as much as possible by providing any or all of the above. In this situation, both the client and the counselor benefit. If it is determined that adequate services do not exist for that individual, it becomes the responsibility of the affiliate to work within the service delivery system to develop needed services.

In both of the above cases, there may be a determination that the specific services that the individual needs are not available in the state. The affiliate will assess whether or not that person would benefit from the specialized services available at HKNC. If it is felt that the center is the most appropriate source for training, contact is made with the HKNC Regional Representative, who will meet with the person on his/her next trip to the state and make his/her recommendation accordingly If the client is willing to go out of state for training, and all those involved agree, then the affiliate will provide whatever assistance is necessary in processing the application to the Regional Representative for his/her recommendation. If the person with deaf-blindness attends HKNC, during the client's stay at the center the affiliate will maintain contact with his/her case manager at HKNC, the center's placement staff, and local service providers to help facilitate the consumer's return home to appropriate residential and employment services.

In addition to those services on behalf of specific consumers, the affiliate continues to make contact with employers and service providers to educate them regarding the needs and capabilities of persons who are deaf-blind, as well as to advocate for new and/or expanded services. This includes participation on a number of related committees and boards outside the affiliate's own agency to help assure that the needs of persons with deaf-blindness are represented. Presentations are made whenever and wherever the opportunities exist for the same reasons.

Another responsibility of the affiliate is the setting up and maintaining of a state registry of all persons identified as deaf-blind. There is no age limit on this registry, and it helps to insure that an individual does not fall through the cracks of the service delivery system, although they may not be receiving any particular services at any given time. The affiliate will do regular updates on persons on the registry as a means of maintaining needs assessment information on that individual. If it is determined there is a need for new services or a change in services already being received, the affiliate will work to see that whatever that need is, it will be met as well as possible given the limited available resources.

Due to the age range and diversity of the population being served by the affiliate, it is and will continue to be impossible to provide any degree of quality service without the cooperation and involvement of the various agencies and programs, family members, and, when possible, the individual him/herself. All these efforts are enhanced by the ongoing support the affiliate receives through the HKNC Affiliate Coordinator, the Regional Representative, HKNC-TAC, training provided by the National Training Team, and at affiliate meetings. The job is too big for one person or one agency, but through interagency efforts on both the state and national level, individuals with deaf-blindness can and will be served, albeit a few at a time.

Information on the Affiliate Program can be obtained from Rod Ferrell at 6801 Kenilworth Avenue, Suite 100, Riverdale, Maryland 20737, (301-699-6255 V, 301-699-8490 TDD).

Note

(1.) Michigan also has a traditional annual 1-team process, which includes all disciplines involved with the recipient. This traditional group sets annual goals. The "mini" 1-team referenced in this article is supplemental to that major group.

Bibliography 

1. Watson, D. & Taff-Watson, M. (Eds.). A Model Service Delivery System for Persons Who Are Deaf-Blind: 1993 Edition. University of Arkansas Rehabilitation Research and Training Center for Persons Who Are Deaf or Hard of Hearing. Little Rock, Arkansas.

2. Wolf, E., Delk, M., & Schein, J. (1982). Needs Assessment of Service to Deaf-Blind Individuals. Final report to U.S. Department of Education, Silver Spring, Maryland: Rehabilitation and Education Experts.

3. Becker, H., Schur, S., Paoletti-Schelp, M., & Hammer, E. The Functional Skills Screening Inventory (1984). Functional Resources Enterprise, Austin, Texas.

Mr. Ferrell is the National Coordinator of Affiliate Services for Helen Keller National Center; Mr. Carlson is the Consultant for Services to Persons Who Are Deaf-Blind, Michigan Commission for the Blind; and Ms. Friend is the Consultant for Services to Persons Who are Deaf-Blind, Kentucky Department of Vocational Rehabilitation.