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					                  ADULT SERVICES: PRESENTATION

                                      Douglas Watson
Abstract: First, the adult service system needs to be more accessible. To achieve
this, we need (a) a reliable data base on the size, distribution, and
characteristics of adults who are deaf-blind; (b) better interpreter training
programs; (c) technical assistance centers; and (d) improved personnel
preparation programs. Second, adults should have expanded options for choice
and control of services and supports. To achieve this, they must be represented
on adult service advisory councils; they must participate in Individualized
Written Rehabilitation Program options for choice and control; and we must
develop voucher or certificate demonstration programs. Third, in order to achieve
a broad systemic and holistic model of community-based services, we must
facilitate inter-agency planning and cooperation. Finally, we need to develop a
consumer-driven system by promoting consumer self-advocacy and involving
consumers and their families in the planning and organizing of adult services.


Fundamental changes are sweeping                         components of participation in the
across America, breaking the chains                      fabric of life in our nation" (Button,
of public ignorance and indifference                     1992, p. 3).      These two powerful
toward people with disabilities. We                      commitments to building a society
are experiencing the coming-of-age of                    which supports efforts to live
the disability rights movement in                        productively      challenge   us    to
America. More and more agree that                        reexamine our nation's approach to
people with disabilities should have                     education and rehabilitation services
equal     opportunities       for   full                 for people who are deaf-blind.
participation in all aspects of society
(Thayer & Rice, 1990). Enactment of                      Appropriately,       this     planning
the Americans With Disabilities Act                      conference has targeted 10 key areas
of 1990 (ADA) empowered consumers                        for reexamination. Numerous issues
by helping people with disabilities                      are readily evident for each of the key
gain control over their lives.                           areas. Our charge, in turn, is to
                                                         articulate a vision that involves a
In P.L. 102-973, the Rehabilitation                      fundamental       restructuring      of
Act Amendment of 1992, Congress                          programs and services and that will
mandated fundamental changes that                        enable persons who are deaf-blind to
reflect values consistent with those of                  gain power over their futures.
the ADA. The program of services
authorized by the Act "empowers
persons with disabilities with choice
                                                                A Population in Search of
and meaningful employment, and
                                                                   Accessible Services
promotes independence, productivity
and     full  integration    into  the
workforce and communitycritical

                Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Douglas Watson                                                                               ADULT SERVICES

Various estimates suggest there are                       307.11 represent our national efforts
somewhere between 30 and 45                               on behalf of children and youth
thousand individuals who are deaf-                        served by the educational system.
blind in the United States (Baldwin &                     Baldwin and Bullis (in press) report
Bullis, in press; Ouellette, 1983;                        these centers annually serve over
Wolf, Delk & Schein, 1982). Lacking                       7000 children and youth. These twin
an accurate census of this low-                           programmatic     investments      by
incidence population, the adult                           Congress have had a significant
service system in this country rarely                     impact on the lives of thousands.
considers the special needs of this                       However, due to limited resources,
group for purposes of program                             the programs do not reach all those
planning and resource allocation. As                      in need.
a result, most programs are ill
prepared to serve the occasional                          In an effort to patch the gaping holes
request for services by a person who                      in this "safety net," a continuing
is deaf-blind. Appropriate services                       series of local, state, regional, and
are often available only for the                          national "state-of-the-art" training
fortunate few who happen to live in                       and technical assistance programs
an area that has skilled local                            have been conducted. Face-to-face
professionals and/or programs.                            and hands-on training for service
                                                          personnel has been supplemented
Over the past two decades, major                          with      the      publication     and
initiatives have directed the nation's                    dissemination        of      numerous
adult service program staff to develop                    guidelines and/or recommendations
the knowledge and skills needed to                        for     practice,    research,     and
serve         these        individuals.                   programmatic approaches. Several
Considerable       resources       were                   of these merit mention. A conference
dedicated to this objective through                       on planning for the future, 1980 is
the development of a national "safety                     Now (Sherrick, 1974), presented
net"      of   specialized     services,                  recommendations for meeting the
supplemented         by       technical                   needs of children affected by the
assistance and support centers in the                     1964-1965 rubella epidemic, as they
10 geographical regions. The Helen                        matured.      Another report, Needs
Keller National Center (HKNC) and its                     Assessment of Services to Deaf-Blind
regional affiliates exemplify the                         Individuals (Wolf, Delk, & Schein,
extensive investments made to                             1982), provided the field with
implement        a      comprehensive                     population estimates and data on
nationwide program that is dedicated                      service needs. The following year, A
to enabling adults who are deaf-blind                     Model Service Delivery System for
to access the adult service system.                       Deaf-Blind Persons (Watson, Barrett,
As a group, this system serves almost                     & Brown, 1983), provided guidelines
2000 clients per year with several                        for the planning and implementation
hundred placed into employment                            of statewide service delivery systems.
annually (HKNC, 1991). State and                          The     Eleventh     IRI:    Vocational
multi-state projects under Section                        Rehabilitation of Deaf-Blind Persons

                 Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Douglas Watson                                                                               ADULT SERVICES

(Konar & Rice, 1984), recommended                         issues merit priority for the next
guidelines    for   improving     state                   decade?
vocational rehabilitation services.
Another national conference, State of
the Art: Research Priorities in Deaf-
                                                                Critical Issues in the Adult
Blindness (Stahlecker, Glass, &
                                                                      Service System
Machalow, 1985), articulated priority
concerns for future research in the                       My charge from the planning
field. A 1986 national conference on                      committee is to address critical
transition issues generated a series                      issues related to the topic of adult
of papers and recommendations,                            services.    The original list of 15
Transition For Persons with Deaf-                         issues generated by the planning
Blindness     and    Other   Profound                     committee has been reorganized into
Handicaps: State of the Art (Covert &                     four priority areas. These include the
Fredericks, 1987).     More recently,                     following: (a) improving access to the
developing concerns with the special                      adult service system, (b) expanding
needs of the elderly have been                            options for choice and control of
expressed in publications by HKNC                         services and supports, (c) facilitating
such as, Identifying Vision and                           inter-agency     program        planning,
Hearing Problems Among Older                              implementation, and coordination,
Persons: Strategies and Resources                         and (d) encouraging consumer
(Bagley, 1989) and Beyond Refuge:                         participation and leadership to
Coping with Losses of Vision and                          ensure a more consumer-driven
Hearing in Late Life (Luey, Belser, &                     system. This review will focus on the
Glass, undated). Collectively, these                      task of relating current practices to
and numerous other such published                         critical issues that need to be
guidelines,                    priority                   addressed within the Federal-State
recommendations, and "state-of-the-                       Vocational Rehabilitation Services
art" training and technical assistance                    Program       and      the      programs
packages have generated a vast body                       associated     with      it   such     as
of knowledge to guide efforts to serve                    independent      living,    independent
persons who are deaf-blind.                               living        centers,         supported
                                                          employment, rehabilitation facilities,
As a nation, we have obviously taken
                                                          and related vendors. Time and space
some     significant  steps   toward
                                                          constraints dictate that only selected
constructing the broad outline of an
                                                          issues can be considered here;
adult service delivery system. The
                                                          however, the format also provides for
task ahead is to fill in that broad
                                                          a follow-up reactor and focus group
outline with a broad systemic and
                                                          discussion which should allow for a
holistic community-based system of
                                                          wider discussion.
comprehensive services for adults
who are deaf-blind. Given the very                        Improving Access to the Adult
real restraints of finite personnel,                      Service System
program, and fiscal resources that
are available to us, what critical

                 Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Douglas Watson                                                                               ADULT SERVICES

Many persons who are deaf-blind                           public and           private      adult   service
have historically found it difficult to                   system.
gain entry into the adult service
system due to the assumption that                         However, a number of critical issues
the severity of their dual disability                     face persons who are deaf-blind and
precluded the ability to obtain                           those who provide adult services to
employment and live independently                         them.
(Konar & Rice, 1984). Denials of
                                                          1.     Population data base.         Our
service were based on concepts of
                                                          nation lacks a reliable data base on
feasibility of successful outcomes,
                                                          the      size,    distribution,      and
concepts which were embedded in
                                                          characteristics of adults within the
the eligibility process for most service
                                                          population     who     are    deaf-blind
                                                          (Baldwin & Bullis, in press). The
The 1990 enactment of the ADA,                            adult service system needs access to
combined with the passage of the                          timely data on the number and needs
Rehabilitation Act Amendment of                           of these individuals in order to plan
1992, effectively eliminates such                         and provide appropriate services.
standards of feasibility and eligibility                  Recognizing     this    problem,      the
and     replaces     them    with    the                  Rehabilitation                  Services
requirement that individuals be                           Administration (RSA) issued Policy
presumed      eligible   for   services.                  Directive 93-02 on November 10,
Specifically, the Act creates "a                          1992, introducing a series of new
presumption of eligibility" for all                       statistical codes to be used by state
applicants         for        vocational                  vocational rehabilitation agencies in
rehabilitation services who have been                     reporting case service data (RSA-911
determined to be disabled.           The                  data system) to RSA on the major
presumption is that a person with a                       and secondary disabling conditions
disability who applies to vocational                      of clients who are deaf-blind (RSA-
rehabilitation services is capable of                     PD-93-02).      Other adult service
benefiting from such services. In                         system programs need to implement
addition, a person is presumed to                         similar mechanisms to enhance the
have a disability if she or he has been                   utility of their client data base
determined to be disabled under                           systems.        Even     the     current
another program. To deny eligibility                      "guesstimates" totally omit the
the agency must show that a person                        growing       numbers      of     elderly
cannot benefit from its services. If the                  individuals experiencing progressive
agency cannot show this, it is                            loss of hearing and sight. Federally
obligated to develop a plan and                           sponsored      population     censuses,
provide services. Consistent with the                     studies, data bases on people served,
values articulated by ADA, these                          and related programs must be
presumptions of feasibility, eligibility,                 mandated to collect and report
and     reasonable      accommodation                     reliable information related to the
extend into all areas of the nation's                     size and characteristics of low-
                                                          incidence populations.

                 Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Douglas Watson                                                                               ADULT SERVICES

2. Interpreter education/training.                        Accommodations Centers (RDBACs)
Good communication is essential to                        to assist consumers, employers, and
ensure access to the adult service                        service systems. To provide these
system,         employment,       and                     centers       with       state-of-the-art
independent living. Persons who are                       materials     on    how      to    make
deaf-blind must have access to                            communication         accommodations,
skilled interpreters (Konar & Rice,                       NIDRR has twice issued requests for
1984; Watson, Barrett, & Brown,                           proposals from the field.            Not
1983).      Yet, interpreter training                     receiving any proposals that merited
projects (ITP) funded by the RSA and                      funding, no grant has yet been
the Office of Special Education                           awarded (Richard Johnson, NIDRR,
Programs (OSEP) are not mandated                          personal communication, September,
to include in their curricula an                          1992). Consumer and professional
emphasis on interpreting for persons                      leaders must insist that NIDRR issue
who are deaf-blind. The 1992 Act                          another call for proposals and form a
added language expanding the                              coalition of experts to jointly apply for
number of ITPs that the Office of                         and conduct this project.            The
Special      Rehabilitative   Services                    RDBACs represent one of this
(OSERS) can fund and requires that                        nation's first major initiatives toward
the mission of the ITPs include                           implementing        the      reasonable
training in interpreting with people                      accommodations mandated by ADA.
who are deaf-blind (P.L. 102-973).                        In the 1990 Rehabilitation Act,
Many ITPs already have excellent                          Congress added language that also
curricula in place; the grant program                     authorizes the state agencies to train
should require these materials be                         employers regarding the ADA. In
pooled and shared, with funds                             order to assist employers and others
earmarked for additional pre- and in-                     to make reasonable accommodations
service education and training                            for persons who are deaf-blind or
activities by both OSEP and RSA                           have other communicative needs, the
ITPs. The field also needs to address                     RDBACs and state agency ADA
the lack of a career path for new                         training units will need effective
interpreters and the inadequate                           materials for consumers, employers,
levels of compensation (Watson,                           and service personnel.
                                                          4.    Personnel training in "best
3.     ADA technical assistance                           practices."     Adult service system
centers.      Adult service system                        personnel     preparation    programs
personnel and employers need access                       such as the RSA- and OSEP-
to training and technical assistance                      sponsored      pre-   and     inservice
as      they      make     reasonable                     education     and    training    grant
accommodations for persons who are                        programs are not providing adequate
deaf-blind. NIDRR (National Institute                     preparation to prepare general or
on     Disability    Research    and                      specialty    personnel     in     "best
Rehabilitation)    has   funded   10                      practices" with persons who are deaf-
Regional Disability and Business                          blind. This omission persists in spite

                 Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Douglas Watson                                                                               ADULT SERVICES

of the fact that state vocational                         requires the State Plan to describe
rehabilitation and other adult service                    the choices given and control over
programs identified such training as                      the determination of goals and
a priority almost five years ago                          objectives. ADA, of course, extends
(Pelavin, Pelavin, & Celebuski, 1987).                    the assurance of empowerment
RSA and OSEP each year allocate                           through choice and control into most
millions of dollars to fund training                      aspects of life.
grant programs for staff development,
Regional Rehabilitation Continuing                        A number of critical issues face
Education Programs (RCEPs), degree                        persons who are deaf-blind as they
programs, and related training                            seek options in the adult service
activities. We need to require that                       system.
these     grant     programs    include
                                                          1. Representation on adult service
provisions      for    covering    "best
                                                          advisory councils. Persons who are
practices"        for     low-incidence
                                                          deaf-blind must participate and be
populations.            Perhaps      the
                                                          represented on advisory councils so
assessment and training models
                                                          they can shape and monitor adult
used by the deafness rehabilitation
                                                          service programs regardless of
field as described by Watson (1990)
                                                          whether or not the programs are
could serve as a viable model for use
                                                          specifically   directed   to   serving
with people who are deaf-blind.
                                                          persons who are deaf-blind (Konar &
HKNC and other specialty programs
                                                          Rice, 1984; Watson, Barrett, &
have the materials already in place
                                                          Brown, 1983; Wolf, Delk, & Schein,
and could help training programs
                                                          1982). Although no data exist on
integrate "best practices" materials
                                                          which      to   base    a    definitive
and instructional techniques into
                                                          declaration, it would be fair to
pre- and inservice curricula.
                                                          estimate that few, if any, general
Expanding Options for Choice and                          adult service programs make it a
Control of Services and Supports                          practice to include consumers who
                                                          are deaf-blind on their advisory
Both the ADA and Rehabilitation Act                       councils.      Yet, most of these
Amendment of 1992 are predicated                          programs are funded with a mandate
on the assumption that persons with                       to serve all persons with disabilities,
disabilities be empowered with choice                     including persons who are deaf-
and control in all aspects of their                       blind.     No wonder low-incidence
lives. Title I of the Act (the Basic                      groups are so poorly served by our
Program of Vocational Rehabilitation                      nation's general service delivery
Services) specifies that individuals                      system, they are too often denied the
must be active participants in their                      opportunity to determine the way in
own rehabilitation programs, making                       which those services are organized
meaningful and informed choices                           and provided. Congress mandated
about the selection of their vocational                   that the composition of various
goals,    objectives,   and    services                   advisory councils established to
(P.L. 102-973).      The Act further                      guide and monitor the programs

                 Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Douglas Watson                                                                               ADULT SERVICES

authorized by the Rehabilitation Act                      individual, consistent with his or her
Amendment of 1992 must include a                          unique strengths, priorities, abilities,
cross-section of representatives of                       and capabilities. The IWRP requires
disability advocacy groups (P.L. 102-                     a statement by the individual in his
973).     Consumer organizations of                       or her own words describing how he
people who are deaf-blind, their                          or she was informed about and
families, advocates, and professionals                    involved     in     choosing      among
in the field must vigorously advocate                     alternative goals, objectives, services,
for their rights to be represented in a                   entities providing services, and
meaningful way on the advisory                            methods used to provide or procure
councils of our nation's adult service                    such services. IWRPs must be jointly
system. This advocacy should be for                       developed, agreed upon, and signed
across-the-board          representation:                 by the Agency and the client or
State       Rehabilitation       Advisory                 significant others (P.L. 102-973).
Councils,       Independent        Living                 This amendment assumes increased
Councils, Supported Employment                            control for individuals in developing
Councils, Projects With Industry                          their own plans of services. It also
Councils,        Research        Advisory                 promotes individual choice for a
Councils, Rehabilitation Technology                       range       of       living     options,
Councils,           Training         and                  vocational/career options, ongoing
Demonstration Project Councils, the                       support         services       (personal
National     Advisory      Council     on                 assistance,               transportation,
Disability, and numerous other                            interpreting, etc.), and empowers the
groups operating on the local, state,                     individual to look beyond entry level
and national level. They also need to                     jobs to careers. Consumers and their
work for representation in the OSEP                       families or advocates must insist that
and RSA peer-review process and                           the intent of Congress be fully
related    activities    in    order    to                implemented on their behalf.
significantly affect the planning,
selection, and award of funding                           As with the requirements of the
grants designed to improve the ways                       existing IWRP process, the key issue
in which education and rehabilitation                     here is access to information.
services are organized and provided                       Service providers will need to make
for adults with disabilities.                             information     available     through
                                                          interpreting, braille or large print
2.         Individualized      Written                    materials,         and         related
Rehabilitation Program (IWRP):                            accommodations to ensure that
Options for choice and control.                           consumers know about all the
Individual options for choice and                         service and support options they are
control of services and supports were                     entitled to (Konar & Rice, 1984;
significantly expanded by Section                         Watson, Barrett, & Brown, 1983;
113 in the Act, reauthorizing the                         Watson & Taff-Watson, in press).
IWRP. Specifically, the IWRP must                         The Act also stipulates that state
be     designed    to    achieve   the                    education and rehabilitation agencies
employment       objective    of   the                    are     to   establish    interagency

                 Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Douglas Watson                                                                               ADULT SERVICES

IEP/IWRP plans for service. RSA and                       alternative ways to make adult
OSEP should be mandated to                                services options available.       The
support programs of information,                          information gained through this kind
training, and technical assistance                        of participation of consumers who
designed to educate consumers, their                      are deaf-blind could lead to a more
families, advocates, and service                          responsive and effective adult service
providers about the extent and scope                      delivery system.
of the client's right to make informed
choices under the revised IWRP
regulations.       HKNC and NIDRR
                                                          Facilitating Inter-agency Program
should likewise be mandated to
                                                          Planning, Implementation, and
conduct evaluative research and
related monitoring programs in order
to    assess     implementation    and                    The needs of consumers who are
outcomes.                                                 deaf-blind are clearly diverse; these
                                                          people require the resources of
3.      Client choice: Voucher or
                                                          multiple adult service agencies.
certificate            demonstration
                                                          Probably the most effective approach
programs. Research has shown that
                                                          to construction of a network of
when people feel powerless, they tend
                                                          effective services has been through
to cope by trying to control others,
                                                          inter-agency       planning       and
creating defensive, oppositional, and
                                                          collaboration (Everson, Rachal, &
unresponsive behaviors in others,
                                                          Michael, 1992; Gottula, 1983; Konar
and fueling a negative cycle that
                                                          & Rice, 1984).         Although the
Schlesinger (1987) describes as the
                                                          composition of these inter-agency
cycle of powerlessness. Under Title
                                                          teams varies considerably, the
VIII of the Act, Congress has added
                                                          agencies and individuals most often
an amendment that calls for
                                                          involved include representatives of
"Demonstration Projects to Increase
                                                          the adult deaf-blind community,
Client Choice." This demonstration
                                                          families,       state      vocational
authority     would     permit    state
                                                          rehabilitation agencies, secondary
agencies to apply for vouchers or
                                                          and postsecondary education and
certificates to be used by people with
                                                          training programs, mental health and
disabilities to purchase their own
                                                          developmental disabilities agencies,
services. The amendment calls for
                                                          vocational education, and other allied
strategies to increase client choice,
                                                          service programs.      The literature
including choice among qualified
                                                          shows that inter-agency collaboration
service     providers   (P.L. 102-973).
                                                          is the most productive way to
Participation in this program would
                                                          improve the planning and delivery of
give the consumer who is deaf-blind
                                                          services to persons who are deaf-
the ultimate control in exercising
                                                          blind. A national program, the HKNC
personal empowerment. Consumers,
                                                          Technical Assistance Center (TAC),
along with their parents and
                                                          has emerged in recent years as the
advocates, need to encourage their
                                                          leading force in assisting states or
state agencies to participate in

                 Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Douglas Watson                                                                               ADULT SERVICES

communities to plan, train, and                           fact, these programs are perhaps the
implement inter-agency teams. Since                       most productive approach available
its inception in 1984, TAC has                            to the field. Priority should be given
trained 18 state inter-agency teams                       to the twin task of exporting the
(Everson, Rachal, & Michael, 1992).                       model to more states and expanding
A primary goal of these inter-agency                      the scope of these efforts to include
team efforts has been to make "best                       an equal emphasis on services for
practices" more readily available                         adults. For instance, some of the
within the existing adult service                         "best practices" in inter-agency
system.    TAC findings show that                         collaboration     programming      are
these collaborative efforts have                          targeted     to  young     adults   in
consistently    produced     positive                     transition; these "best practices"
community-integrated outcomes for                         need to be extended to adult services
persons who are deaf-blind.                               for all ages, including the growing
                                                          number of senior citizens with late-
Inter-agency collaboration networks                       onset dual loss of hearing and vision.
can be expanded and improved. A                           Additional funding would obviously
number of issues need to be                               be needed; RSA and other related
addressed.                                                adult service funding sources should
                                                          be made aware of the success of the
1.     Inter-agency adult service
                                                          TAC program and encouraged to
collaboration. Although originally
                                                          allocate the funding needed to
pioneered by HKNC and various
                                                          replicate and otherwise expand the
statewide inter-agency adult service
                                                          program into the adult service
collaboration efforts (Gottula, 1983;
Konar & Rice, 1984), much of the
recent literature has focused on                          2.    Broad systemic and holistic
services for children and youth in                        community-based              approach
transition. To their credit, it appears                   needed. A detailed description and
that efforts such as the TAC program                      discussion of the numerous issues
have significantly improved upon the                      associated with the scope, mix, and
original concept through the years.                       quality of services most often
Further, the literature implies that                      included        in        inter-agency
these activities have encompassed                         collaborations is not possible within
the needs of adults as well as youth                      the context of this paper. However,
in transition. Yet, a careful reading                     various combinations of the following
of this body of literature fails to                       adult service systems are most often
provide substantial evidence that                         represented in the literature:
adult services have received equal
attention and resources. Whatever                            Inter-agency coordination and
the case, the HKNC TAC project and                             planning between education and
various        other      inter-agency                         rehabilitation programs
collaboration        teams         have
successfully demonstrated that such                          Centralized case management
programs can be highly effective; in                           arrangements

                 Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Douglas Watson                                                                               ADULT SERVICES

 Coordinated transition from                             help them improve their ability to
   school to adult services, work,                        serve persons who are deaf-blind,
   and independent living                                 most asked for help in a large
                                                          number of areas. This great need for
 A wide range of state                                   technical assistance suggests both
   vocational rehabilitation                              that agencies are actively trying to
   services                                               serve these individuals and that they
                                                          are aware of the need to improve
 Community-based independent                             their knowledge and skills to do so.
   living centers and independent                         However encouraging it was to find
   living services                                        so many agencies involved in service
                                                          delivery, the authors were disturbed
 Supported and competitive
                                                          to find that a vast majority of these
   employment services
                                                          programs continue to use an isolated
 Housing and transportation                              skills training approach instead of a
   assistance                                             broad systemic and holistic model of
                                                          community-based services for these
 Recreation and leisure services                         individuals. In concluding their
                                                          report, the authors recommended the
 Postsecondary training and                              following:
   continuing education
                                                          Future     funding     priorities    and
 Interpreter training, information                        technical assistance activities must
   and referral                                            aggressively promote holistic and
                                                           visionary client planning (e.g.,
 Assistive technology and                                 personal       futures        planning,
   supports                                                supported       living,      supported
                                                           employment,         home         school
 Personal assistance services                             initiatives)   along     with     broad
                                                           systemic and administrative inter-
 Services for families and parents,
                                                           agency change supports. (pp. 50-
   including respite care
 Personal futures planning
                                                          Is the field prepared to take a broad
Seiler, Everson, & Carr (1992)                            systemic and holistic approach to
completed a national survey of                            community-based           inter-agency
agencies that reported they provided                      service delivery for persons who are
services for persons who are deaf-                        deaf-blind?     That is clearly the
blind.       They received usable                         direction that Congress has mapped
responses      from   719   agencies                      out in the Rehabilitation Act
distributed across the nation which                       Amendment of 1992.         The broad
provided a mix of the kinds of                            systemic and holistic approach
services listed above. When asked if                      proposed by the Act will require a
they needed technical assistance to                       careful reading, followed by an
                                                          equally fundamental restructuring of

                 Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Douglas Watson                                                                               ADULT SERVICES

how we conceptualize and approach                            greatest possible degree of choice
the delivery of services to adults who                       about where you live, with whom
are deaf-blind. The current approach                         you live, how to live, and how to
used by the TAC model for training                           use time.    This includes taking
inter-agency teams may be a good                             risks and having the right to
starting point. The TAC model has                            succeed or fail. It also includes
developed extensive networks that                            taking responsibility for one's
have demonstrated its effective                              decisions and actions. (pp. 10-11)
implementation.      How we perform
this task may well be one of the most                     The achievements of the disability
critical issues we face in the near                       rights movement in the United States
future.                                                   are self-evident in the enactment of
                                                          ADA and the current language
                                                          Congress       is     using     in    the
                                                          Rehabilitation Act Amendment of
                                                          1992.      These achievements were
                                                          hard earned, products of a drive by
Encouraging              Consumer
                                                          grassroots       consumer      advocates
Participation and Leadership
                                                          whose self-advocacy sparked the
Tracing the roots of the development                      disability rights movement. However,
of the adult service system for people                    we must not lose sight of the
with disabilities in the United States,                   responsibilities that these new rights
Thayer and Rice (1990) noted it                           bring. First, the right to control one's
should not be assessed in isolation                       own life requires assuming the
from the broader disability rights                        responsibility      for   self-advocacy.
movement.            Reviewing     this                   Second,       it      assumes      active
movement, they described it as                            involvement in general adult service
follows:                                                  system      advisory     councils    and
                                                          planning groups.
The historic and long-term drive by
 people with disabilities to be                           Issues related to each of these
 empowered with the rights of self-                       interrelated    responsibilities  for
 determination and control of their                       consumers who are deaf-blind and
 own lives, to become integrated as                       their families (or advocates) need to
 active, productive, and respected                        be addressed:
 members of their families and
                                                          1. Consumer self-advocacy. Self-
 communities . . . making cultural
                                                          advocacy as used here, refers to the
 and life style choices among options
                                                          concept of individual and group self-
 that minimize reliance on others in
                                                          advocacy which "underlies the basic
 decision-making         and       in
                                                          philosophical and political tenets of
 performance of everyday activities,
                                                          American     society:   self-reliance;
 limited only in the same ways that
                                                          freedom to make choices on how to
 people without disabilities are
                                                          best meet one's own needs; freedom
 limited. It means exercising the
                                                          to pursue one's own interests in

                 Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Douglas Watson                                                                               ADULT SERVICES

social, political, and economic areas .                   independent living field over the past
. . . The key to success in any social                    two decades have proven highly
movement always has been and still                        effective and would be easily
is self-advocacy" (Funk, 1986, p. 3).                     adaptable for use by consumers who
If the history of the disabilities rights                 are deaf-blind. A self-help manual,
movement in this country has taught                       Consumer Involvement in Advocacy
us anything, it is that programmatic                      Organizations:           Rehabilitating
reform can be enacted and sustained                       Communities for Independent Living
only with the active participation of                     (Balcazar & Seekins, 1986), provides
the beneficiaries of that reform. We                      materials in easy-to-use form to help
need to be sure that, whether on the                      organize advocacy groups and teach
individual level or in organized                          advocacy procedures. This and other
groups, consumers who are deaf-                           training packages have been widely
blind and families with members who                       used in cross-disability training
are deaf-blind are ultimately the ones                    efforts that, unfortunately, rarely
who make their own choices and                            included adults who were deaf-blind.
define their own needs. Many are                          The leadership of the field needs to
concerned with a broad range of                           correct this gross disservice and give
issues, but few know how to take                          priority to establishing a continuing
effective action. Too often persons                       program of self-advocacy training for
who are deaf-blind have not acquired                      adults who are deaf-blind. Federal
advocacy skills nor have they learned                     agencies such as OSEP and RSA
how to influence decision makers.                         should more closely monitor federal
The same observation holds for many                       grant projects that are supposedly
families with members who are deaf-                       "cross-disability," to ensure that
blind.    Three of the more recent                        federal funds to such consumer
programs developed by HKNC have                           groups do in fact make a concerted
addressed this need in part by                            effort to include persons who are
providing technical assistance and                        deaf-blind.
training workshops for consumers
and families through programs such                        2. Involvement in planning and
as TAC, National Parent Network,                          organizing adult services.           If
and the HKNC program for Older                            consumers and families wish to
Persons        with      Deaf-Blindness                   control the services and supports
(Barrett, in press).         These are                    they need or desire, they must be
important resources; however, we                          actively involved in the planning and
also need to empower entire groups                        organization of those services. This
to assume lead roles in self-advocacy.                    basic tenet has been stressed
In our field, these consumer groups                       repeatedly in the preceding review
are the American Association of the                       and is presented yet one more time in
Deaf-Blind (AADB), and numerous                           order to reemphasize the central
local and state consumer and parent                       importance of consumer leadership.
advocacy groups.         Programs and                     Moreover, we perhaps need to borrow
materials      developed      by      the                 from      the    independent    living
                                                          movement by speaking out in favor of

                 Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Douglas Watson                                                                                ADULT SERVICES

majority representation on the                                Sands Point, NY:                Helen   Keller
advisory    councils    of   programs                         National Center.
established specifically to serve
adults who are deaf-blind.        This                     Balcazar, F., & Seekins, T. (1986,
would also include a call for strong                        Winter). Manual teaches advocacy
adult consumer representation on                            skills. Independent Living Forum, 4,
inter-agency team efforts targeted to                       1.
children and youth; surely those
                                                           Baldwin, V., & Bullis, M. (in press).
teams could benefit greatly from
                                                            Census      of      the    deaf-blind
such adult input!       The issue of
                                                            population. In D. Watson & M. Taff-
representation is real; the field must
                                                            Watson (Eds.), A model service
recognize the importance of this
                                                            delivery system for persons who are
issue. The adult service system for
                                                            deaf-blind.    Little   Rock,     AR:
persons who are deaf-blind should be
                                                            University         of       Arkansas
fully consumer-driven. By the same
                                                            Rehabilitation      Research     and
token,    their  representation     on
                                                            Training Center for Persons who are
general adult service system advisory
                                                            Deaf or Hard of Hearing.
councils and planning groups also
merits priority.                                           Barrett, S. (in press). Vocational
                                                            rehabilitation of persons who are
As a nation, we cannot afford to
                                                            deaf-blind: Issues in planning and
overlook the vast talents, motivation,
                                                            service delivery. In D. Watson & M.
experiences, and insights that only
                                                            Taff-Watson (Eds.), A model service
consumers can provide. Making the
                                                            delivery system for persons who are
adult service system accessible to
                                                            deaf-blind: Revised. Little Rock, AR:
persons who are deaf-blind demands
                                                            University         of       Arkansas
our best efforts.    Until the adult
                                                            Rehabilitation      Research      and
service system is consumer-driven,
                                                            Training Center for Persons who are
we have not put the best team
                                                            Deaf or Hard of Hearing.
players on the field. In the decade
ahead, if we change nothing else in                        Button, C. (1992, March/April).
the way we plan and organize adult                          Congress tackles rehab... Word from
services for persons who are deaf-                          Washington.      Washington, DC:
blind, let that one change be to                            Washington Reports.
ensure that consumers and families
are leading us forward.                                    Covert, A., & Fredericks. B. (Eds.).
                                                            (1987). Transition for persons with
                                                            deaf-blindness and other profound
                                                            handicaps: State of the art.
                                                            Monmouth,         OR:      Teaching
Bagley, M. (1989). Identifying vision                       Research.
 and hearing problems among older
                                                           Everson, J., Rachal, P., & Michael,
 persons: Strategies and resources.
                                                            M. (1992). Interagency collaboration
                                                            for young adults with deaf-

                  Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Douglas Watson                                                                               ADULT SERVICES

 blindness: Toward a common                                  Training Center on Deafness and
 transition goal. Sands Point, NY:                           Hearing Impairments.
 Helen Keller National Center.
                                                          Pelavin, D., Pelavin, S., & Celebuski,
Funk, R. (1986, Winter). Self-                             C. (1987). National assessment of
 advocates push beyond civil rights.                       personnel shortages and training
 Independent Living Forum, 4, 1.                           needs in vocational rehabilitation.
                                                           Washington,         DC:       Pelavin
Gottula, P. (1983). Interagency                            Associates.
 cooperation. In D. Watson, S.
 Barrett, & R. Brown (Eds.), A model                      Schlesinger, H. (1987). Buds of
 service delivery system for deaf-                         development:     Antecedents     of
 blind persons.    Little Rock, AR:                        academic achievement. Cited in H.
 University       of       Arkansas                        Luey, D. Belser, & L. Glass (Eds.),
 Rehabilitation    Research     and                        Beyond refuge: Coping with losses
 Training Center on Deafness and                           of vision and hearing in late life.
 Hearing Impairment.                                       Sands Point, NY: Helen Keller
                                                           National Center.
Helen Keller National Center for
 Deaf-Blind Youths and Adults.                            Seiler, L., Everson, J., & Carr, T.
 (1991). Annual report to congress.                        (1992). A needs assessment of
 Sands Point, NY: Helen Keller                             agencies serving individuals with
 National Center.                                          deaf-blindness: A national profile of
                                                           transition services. Sands Point,
Konar, V., & Rice, B. (1984).                              NY: Helen Keller National Center.
 Strategies for serving deaf-blind
 clients.    Eleventh Institute on                        Sherrick, C. (1974). 1980 is NOW: A
 Rehabilitation Issues. Fayetteville:                      conference on the future of deaf-
 University        of      Arkansas                        blind children. Los Angeles, CA:
 Rehabilitation     Research    and                        John Tracy Clinic.
 Training Center.
                                                          Stahlecker.   J.,   Glass,  L.,   &
Luey, H., Belser, D., & Glass, L.                          Machalow, S. (Eds.). (1985). State-
 (undated). Beyond refuge: Coping                          of-the art: Research priorities in
 with losses of vision and hearing in                      deaf-blindness. San Francisco, CA:
 late life. Sands Point, NY: Helen                         University of California Center on
 Keller National Center.                                   Mental Health and Deafness.

Ouellette, S. (1984). Deaf-blind                          Thayer, T., & Rice, B. (1990).
 population estimates.        In D.                        Vocational rehabilitation services in
 Watson, S. Barrett, & R. Brown                            independent       living      centers.
 (Eds.), A model service delivery                          Seventeenth         Institute      on
 system for deaf-blind persons. Little                     Rehabilitation Issues. Fayetteville:
 Rock, AR: University of Arkansas                          University        of         Arkansas
 Rehabilitation     Research     and                       Rehabilitation      Research      and
                                                           Training Center.

                 Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Douglas Watson                                                                                   ADULT SERVICES

Watson,     D.    (1990).   Deafness
 rehabilitation: A major force in
 services to deaf people. In M.
 Ragosta (Ed.), Progress in education
 and rehabilitation of deaf and hard
 of hearing individuals (Report of
 OSERS Contract No. 300-87-0056).
 New Brunswick, NJ: Rutgers

Watson, D., Barrett, S., & Brown, R.
 (Eds.). (1983). A model service
 delivery system for deaf-blind
 persons. Little Rock, AR: University
 of      Arkansas      Rehabilitation
 Research and Training Center on
 Deafness and Hearing Impairment.

Watson, D., & Taff-Watson, M. (in
 press). A model service delivery
 system for persons who are deaf-
 blind: Revised.    Little Rock, AR:
 University       of        Arkansas
 Rehabilitation    Research      and
 Training Center for Persons who are
 Deaf or Hard of Hearing.

Wolf, E., Delk, M., & Schein, J.
 (1982).   Needs   assessment of
 services to deaf-blind individuals
 (Final   Report   to   the    U.S.
 Department of Education) Silver
 Spring, MD:REDEX.
                              

                     Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Stephen Perreault                                                                               ADULT SERVICES

                           ADULT SERVICES: REACTION

                                         Stephen Perreault
Abstract: Services for adults who are deaf-blind need to be more accessible as
well as provide more continuity. A 1984 task force in Massachusetts examined
the service needs of those who are deaf-blind and how those needs were being
met. The resulting program used a system of centralized case management
within a lead agency that was able to provide centralized information and
referral, coordinated case management, utilization of specialty support services,
and coordination of inter-agency resources. On a national level, leadership in
achieving coordinated services might be provided through the Rehabilitation
Services Administration (RSA). Other recommendations include improved
personnel training, more choices and control of services by those who will receive
them, and more inter-agency program planning and coordination.
Recommendations presented in the position paper of the National Coalition on
Deaf-Blindness are cited and RSA is urged to collaborate with the writers of that
position paper.


I congratulate Doug Watson for his                           and state organizations of parents of
paper and comprehensive summary                              children who are deaf-blind.
of current literature and practices in
the    provision    of   rehabilitation
services to individuals who are deaf-
                                                                  Limitations in Adult Services
blind. I was especially thankful for
his analysis of legislative changes                          Much of the literature that Doug
brought      about     through      the                      cited in his paper emanated from
Rehabilitation Act Amendment of                              efforts to plan and advocate for the
1992 and the potential benefits for                          transition from education to adult
persons who are deaf-blind. I will                           services of the approximately 5
attempt to react to and supplement                           thousand young adults who were
Doug's paper by drawing from three                           deaf-blind as a result of the rubella
aspects of my personal experience (a)                        epidemic of      1964-65. This same
as a teacher of children who are deaf-                       literature    detailed    ranges     of
blind, (b) as an administrator of an                         supported employment and living
adult service program for individuals                        options along with social, health, and
who are deaf-blind, and (c) from                             ancillary services important to the
information gained through work                              successful     transition    of    this
with the National Parent Network                             population. The majority of these

                    Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Stephen Perreault                                                                               ADULT SERVICES

people entered the adult service                                Services for individuals who are
system in the years 1986-88. What                                 deaf-blind require comprehensive
happened? Giving myself the license                               planning in order to be effective.
to    react   both    from    personal
experience and from experiences                                 Supported employment has been
related by a number of parents, I                                 an underutilized resource in
would like to offer the following                                 providing vocational services to
statements: (a) For the majority of                               individuals who are deaf-blind.
these young adults and their families
the experience was a disaster; (b)                              There is no consistent method for
programs were not and are not in                                  collecting data and tracking the
place in adult service systems, which                             experience of individuals who are
provide for the expansion of                                      deaf-blind who are receiving
capacities learned in education                                   rehabilitation services.
programs; and (c) services which
                                                                Individuals who are deaf-blind
assist in obtaining basic quality-of-
                                                                  could       obtain   community
life goals such as personal housing,
                                                                  participation through supports
productivity,     friendships     and
                                                                  provided through independent
recreation have not been accessible
                                                                  living centers, yet often these
to    these    individuals   due    to
                                                                  services are not developed or
inadequate resources, inappropriate
program planning, and untrained
personnel.                                                      Early planning and inter-agency
                                                                  coordination is essential for the
In addition, a working group of the
                                                                  successful transition of youth who
National Coalition on Deaf-Blindness,
                                                                  are deaf-blind from education to
in an analysis of adult services in
                                                                  adult services.       Parent/family
preparation for the reauthorization of
                                                                  member involvement is necessary
the Rehabilitation Act, arrived at a
                                                                  to formulate an individualized
consensus on the following issues:
                                                                  plan that reflects the appropriate
 There are currently no programs                                 choices and abilities.
   that     prepare     rehabilitation
                                                                Persons over age 65 with dual
   personnel to provide services to
                                                                  sensory loss make up a growing
   individuals who are deaf-blind.
                                                                  population in need of services.
 Rehabilitation programs often do
                                                             We     must      acknowledge       some
   not include components that
                                                             wonderful examples of individual
   address the specific service needs
                                                             successes and innovative programs.
   of individuals who are deaf-blind.
                                                             Helen Keller National Center, its
   Time-limited and current case-
                                                             regional offices and affiliate programs
   closure        standards       are
                                                             and Technical Assistance Centers
   inappropriate service techniques
                                                             (TAC) have done an outstanding job
   for persons with progressive
                                                             of providing training and technical
   sensory loss.

                    Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Stephen Perreault                                                                               ADULT SERVICES

assistance to a number of individuals                        on    adult    service  needs    and
who are deaf-blind, their families,                          experiences. This could be done by
and service providers. Yet I believe                         adding a five-year follow-up study
they would be the first to agree that                        mandated through state and multi-
we are only at the initial stages in                         state projects under Section 307.11.
addressing the adult service needs of                        These data should be available to the
individuals who are deaf-blind on a                          National Register at Helen Keller
comprehensive, coordinated, and                              National Center.
national basis.
                                                             Before      proceeding     with    an
To begin to address this as an issue                         examination of barriers within the
that can be affected by policy                               adult service system, there are some
statements and recommendations                               common characteristics that will give
requires that we ask, "What is unique                        us a basis for discussion of
about the population of adults who                           accessibility for adults who are deaf-
are deaf-blind?"       "What are the                         blind:
barriers in the adult service system
that prevent the obtainment of                                  The population of persons who are
eligible services?" and "How do we                                deaf-blind is heterogeneous with
remove barriers in order to allow                                 regard to the effects that
services to be accessible?" I agree                               combined sensory loss has on an
that the passage of the Americans                                 individual's          educational,
With      Disabilities    Act     and                             functional,     and      vocational
congressional      intent   in     the                            capacities.   A large number of
reauthorization process give us a                                 persons who are deaf-blind may
mandate to proceed; however, I                                    have     additional    disabilities.
believe we need to be proactive in                                Systematic programming for this
definition of service needs of all                                population      must       address
adults who are deaf-blind if they are                             individual needs and capacities.
to be included in new planning and                                Often, services need to be
changes.                                                          coordinated from a variety of
                                                                  sources and disciplines.

                                                                The most common effect on people
             The Population                                       of all ages who are deaf-blind is
                                                                  impairment of communication.
I support Doug's call for the need for                            Development of communication
a federally sponsored database in                                 capacities through individualized
assessing the size and characteristics                            intervention     is     essential.
of the population of adults who are                               Individual learning and access
deaf-blind. I would supplement this                               needs may vary, yet if persons
recommendation by suggesting that                                 who are deaf-blind are to benefit
currently we do have a database of                                from services, communication
children who are deaf-blind and that                              assessibility and enhancement
this is a source of future information                            must be at the center of program

                    Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Stephen Perreault                                                                               ADULT SERVICES

   planning whether it is for                                In    1984     a    task    force  was
   supported          employment,                            commissioned within the state of
   independent living, or college                            Massachusetts to examine the
   attendance.                                               service needs of individuals who are
                                                             deaf-blind and how those needs were
 Etiology may be present at birth as                        currently being met by state
   in rubella syndrome or later in life                      agencies. The task force consisted of
   as with Usher syndrome or aging.                          consumers, parents, educators, and
   In both cases sensory capacities                          representatives     from     key  state
   may vary and change over time so                          agencies. The impetus for this effort
   that services which support living,                       came from multiple sources: (a)
   work, and social goals may need                           anticipation of the transition from
   to be modified.                                           education to adult services of
                                                             approximately 75 young adults who
In returning to the themes of Doug's                         were deaf-blind during the years of
paper,      access,    choices,    and                       1987-90;      (b)     advocacy    from
empowerment,         I  would     offer                      consumers       frustrated    by  case
communication             accessibility,                     management systems that were
coordination of multiple services, and                       inaccessible due to lack of expertise
flexibility in service delivery as the                       in communication and service needs;
means for achieving these goals                              (c) parents who complained of being
through      systems    change     and                       shuttled from agency to agency when
modification.       I would like to                          seeking to identify adult service
illustrate this point by presenting a                        responsibility; and (d) a follow-up
process of identifying and removing                          study of individuals who had
barriers to services for adults who                          previously transitioned from state
are deaf-blind.                                              and multi-state projects under
                                                             Section    307.11      (formerly  VI-C
                                                             programs) which found that many of
       The Massachusetts Plan                                these individuals were confined to
                                                             their homes without services and
I will draw from our experiences in                          supports.
Massachusetts, not to offer a model
for replication, but to examine issues                       The task force examined more than a
which I feel are critical if we are to                       dozen services including residential,
comprehensively approach a service                           vocational,              recreational,
system design that is responsive to                          transportation,           interpreter,
the unique needs of this population.                         independent living, medical, social,
Time does not permit a complete                              and so on, requested by individuals
accounting of our efforts and this is                        who are deaf-blind and their families.
available in other sources (Barrett,                         Various aspects of these services
Carr, & Covert, 1987; Covert & Carr,                         could be accessed from at least nine
1988).                                                       different state agencies.    As was
                                                             expected, there existed huge gaps in
                                                             the continuity of services needed by

                    Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Stephen Perreault                                                                               ADULT SERVICES

the range of persons who were deaf-                          by the state legislature through
blind.                                                       appropriation of funds. The State
                                                             Commission for the Blind accepted
A report issued by the task force                            responsibility as lead agency and
identified service gaps in the                               utilized both new and prior funding
aforementioned areas and developed                           sources to create a Program of
numerous       recommendations     to                        Services for individuals who are deaf-
address these gaps. Central to the                           blind. The program consisted of a
outcome of the report was the                                director,    supervisor,    six    case
realization of the need for change in                        managers, and three persons with
the system of service delivery for                           responsibility       for       program
individuals who are deaf-blind. I                            development, technical assistance,
believe these recommendations are                            and training.      The staff of this
crucial in developing accessible                             program functioned primarily as a
systems of adult services.     These                         team and consisted of persons with a
include the following:                                       broad spectrum of experiences in
                                                             providing services to individuals who
 The assignment of a lead agency,                           are deaf-blind and who are of
   with responsibility as a point of                         differing ages and capacities.
   entry into the adult service
   system, to coordinate all the                             The initial task of the program was to
   resources of that system.                                 coordinate and develop a range of
                                                             vocational and residential services for
 A system of case management by                             the population of individuals who are
   personnel with background and                             deaf-blind and transitioning from
   expertise     in      assessment,                         education to adult service programs.
   communication, and development                            There were significant resources
   of comprehensive plans of service                         appropriated for this task and these
   to meet the unique needs of                               services were developed for more
   individuals who are deaf-blind.                           than 75 people in a three-year
                                                             period. Again, time and space do not
 Capacity to provide technical
                                                             permit me the opportunity to relate
   assistance and training to state
                                                             the     full     details     of    this
   and community agencies to
                                                             accomplishment.       I would like to
   promote       accessibility     for
                                                             highlight some key points:
   individuals who are deaf-blind.
                                                                There is no one model of
 Coordination       of      program
                                                                  residential or vocational programs
   development to meet identified
                                                                  that we can prescribe for persons
   service gaps within the system.
                                                                  who are deaf-blind. A continuity
Through coordinated advocacy and                                  of service options is needed that is
lobbying by parents, consumers, and                               responsive to and developed from
professionals,       the      above                               individual needs, choices, and
recommendations were implemented                                  capacities.

                    Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Stephen Perreault                                                                               ADULT SERVICES

 Communication and access to                                who are deaf-blind.        Given the
   information from a variety of                             communication       needs     of   this
   modes are essential for the                               population, I believe this is essential
   achievement of quality of life goals                      for    system     accessibility   and
   in residential, vocational, and                           individual empowerment through
   community domains and yet are                             informed choices.
   often the most difficult to achieve.
                                                             Coordinated Case Management
 Resources for increased staff and
   availability      for       personal                      Case managers within the program
   interaction need to be examined                           had access to the social, vocational,
   and     included      in    program                       and independent resources of the
   development. Along with the lack                          agency.   This was crucial in the
   of funding, the lack of experienced                       development     of   plans    which
   persons and training options is                           supported the personal, living, and
   the      primary       barrier    to                      employment goals of individuals.
   comprehensive               program                       Issues       of     communication,
   development.                                              transportation, and acquisition of
                                                             other supports were integrated
I realize that the amount of resources                       across     this    planning      and
available for the development of this                        implementation.
program was unique. It is probably
not realistic to expect a similar level                      Utilization of Specialty Support
of funds across all other state                              Services
systems. Yet I believe there were also
                                                             Training and technical assistance
a     number      of   benefits   that                       were provided to other agency
centralization of case management                            programs whose services were
within a lead agency had in                                  utilized by individuals who are deaf-
improving accessibility of services for                      blind.      Examples include the
individuals who are deaf-blind. The                          integration         of        adaptive
majority of examples I will offer here                       communication techniques within
were achieved without additional                             instruction    in   orientation   and
funding; instead they were achieved
                                                             mobility, the inclusion of provision
by examination of how existing                               and training in use of hearing
resources could be coordinated and                           devices, and communication training
adapted for enhanced accessibility.                          within the agency program for
Centralized           Information             and            individuals who are blind and over
Referral                                                     age 65.

The creation of this program provided                        Coordination              of       Inter-Agency
consumers, families, and other                               Resources
agencies a single access point for                           During my time as director of this
information on resources available                           program, I cannot think of a single
through state agencies for individuals                       state agency's resources that were

                    Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Stephen Perreault                                                                               ADULT SERVICES

not utilized in some way in the                              believe was important is that we were
development of a comprehensive                               working within a system to remove
service system. This ranged from                             the barriers of that system and gain
minimal to major collaboration, but                          improvements in service delivery.
illustrates the continuum of services
needed and the enormous task in                              I realize I have spent time illustrating
providing      accessibility   for  all                      state systems within a forum
individuals who are deaf-blind.                              designed to examine federal systems
Initially, we worked most closely with                       and services. Yet I believe this was
the Commission for the Deaf in                               necessary to lay the groundwork for
enhancing       the    availability  of                      how Office of Special Education
interpreter resources and technology.                        Rehabilitation     Services    (OSERS)
We also assisted the Department of                           directives can lead the way in
Elder Affairs in identifying and                             initiating accessible systems of
providing services to individuals with                       services for adults who are deaf-
dual sensory impairment in nursing                           blind. It should be remembered that
homes. We advocated within the                               provision of adult services in state
Department of Mental Retardation for                         systems involves multiple agencies
community          placements       for                      and community programs, of which
individuals who were deaf-blind and                          rehabilitation is one aspect. I believe
in state institutions. We collaborated                       that     leadership     through      the
with the Department of Mental                                Rehabilitation                  Services
Health to identify resources for out-                        Administration (RSA) could provide
patient and in-patient services.                             great benefit in the coordination of
                                                             adult services for individuals who are
Finally, do I believe we approached                          deaf-blind.
full     accessibility    and     optimal
individualization of services for all                        I would like to return to some
adults who are deaf? The answer is                           recommendations offered by Doug in
no. We struggled to obtain funds                             his paper and then supplement with
that would have replicated services                          recently proposed recommendations
such as those offered by the Deaf-                           by the National Coalition on Deaf-
Blind Service Center in Seattle, to be                       Blindness.
offered     on     a    regional    basis
throughout the state. We were able
to fund expansion of the programs of                                      Recommendations
the Deaf-Blind Contact Center from
Boston to include the central region                         Personnel Training
of the state. We made inroads on
accessing         services       through                     Doug spoke to the integration of
Independent Living Centers for the                           competencies in the pre-service and
Deaf. We struggled with the state                            inservice     curricula      personnel
contracting      system     to    provide                    preparation grants awarded by the
flexibility   to     provide     in-home                     Office of Special Education Programs
residential supports.        What I do                       (OSEP).           I    believe    this

                    Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Stephen Perreault                                                                               ADULT SERVICES

recommendation should receive a                              that this be supplemented by
strong endorsement and would like                            training materials and targeted
to add some additional details:                              competencies in service delivery. Too
                                                             often, I fear this priority is translated
Targeted training programs.           I                      into a sign language course rather
believe this recommendation would                            than strategies for coordination of
be most beneficial if those programs                         services.     Also this development
are      targeted     that      prepare                      should be extended to community
professionals most likely to be                              agencies receiving federal funds
involved in service provision to adults                      particularly     in    the    areas     of
who are deaf-blind. Specifically these                       employment and independent living.
include preparation programs for
rehabilitation      counselors      for                      Choices and Control of Services
individuals who are blind and
individuals who are deaf, orientation                        I    would      supplement      Doug's
and     mobility    specialists,   and                       discussion here by adding two
rehabilitation teachers.                                     points. First I think we need to
                                                             speak to informed choices and
Pre-service programs in education.                           choices of services that truly meet
In    developing    a    system     of                       the needs of individuals who are
community-based        services    for                       deaf-blind.       Services that are
individuals who are deaf-blind in                            fractured and uncoordinated without
Massachusetts, our biggest obstacle,                         planning or discussion of the unique
once funding was secured, was hiring                         needs of this diverse population do
staff with any expertise in working                          not present choices to consumers
with individuals who are deaf-blind.                         and families.       They simply offer
Often contracts would go unbid or                            frustration and struggle. We, as a
undeveloped. Our strategy was to                             collection of persons concerned about
fund at least one position in each                           high quality services for individuals
program with a salary competitive                            who are deaf-blind, have much work
with those offered in education                              to do in examining options of services
programs and to recruit directly from                        within adult services and translating
those programs. The lack of funding                          those options into understandable
of personnel preparation programs                            choices     for    other   consumers,
for education of individuals who are                         families, and professionals. Creative
deaf-blind is compounded by the                              plans developed through personal
needs in adult services. With limited                        futures     planning     can   identify
resources we must look to those                              individual capacities and needs for
programs to include competencies                             supports. Systems modification such
and expertise to cover both areas.                           as those offered through enhanced
                                                             Individualized Written Rehabilitation
Agency staff development.           In                       Programs (IWRP) and model Medicaid
recent years RSA has cited deaf-                             Supported Living programs can offer
blindness as a priority in agency staff                      those supports. Yet I believe there is
development plans. It is imperative                          an information and advocacy link

                    Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Stephen Perreault                                                                               ADULT SERVICES

that needs to be made if those                               I would further add that advocacy
services are to be accessible for                            will only be successful if it is
adults who are deaf-blind. I will                            undertaken by a coalition of
return to this point at the end of this                      consumers,        families,      and
paper.                                                       professionals in education and
                                                             rehabilitation. We cannot afford to
Second, we must also remember that                           be fractured or divisive if we are to
there are a large number of persons                          undertake the task of improving
who     are    deaf-blind    in   state                      adult    service  delivery   for   all
institutions and nursing homes.                              individuals who are deaf-blind.
Without identification, advocacy, and
assistance those persons are without                         Recommendations of the National
choices, not just in service needs, but                      Coalition on Deaf-Blindness
often in basic needs such as choices
of food or clothing.                                         Finally, I would note as important
                                                             the position paper of the National
Inter-Agency Program                   Planning              Coalition on Deaf-Blindness on
and Coordination                                             reauthorization of the Rehabilitation
                                                             Act.    This paper includes specific
Doug has admirably articulated both                          recommendations to RSA regarding
a need and a vision for inter-agency                         improvement       of     rehabilitation
coordination and service delivery for                        services on a national level for
individuals who are deaf-blind. This                         individuals who are deaf-blind.
is crucial if we are to approach true                        Several recommendations have been
accessibility of services. I hope I                          stressed in my paper, specifically,
have illustrated this need with some                         vital needs in personnel preparation.
of our work and experiences in                               Others include the following:
Massachusetts. I would reemphasize
that, if our task is to advocate                             1.     Monitor and mandate the
nationally and in individual states for                      inclusion in state plans of procedures
a high quality life for all adults who                       for the delivery of rehabilitation
are deaf-blind, and I would stress the                       services for individuals who are deaf-
word "all," then we must do the                              blind.    Planning will include the
following:                                                   following:

1. Identify the diverse service needs                           assignment of lead agency
of this population.
                                                                prioritization in order of selection
2. Identify the totality of services
which rightly should be accessible.                             determination            of         appropriate
                                                                  evaluation             and           eligibility
3. Plan to offer those services in a                              procedures
coordinated     delivery     system
addressing                individual                            casefinding, referral, and intake
communication needs and supports.                                 procedures

                    Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Stephen Perreault                                                                               ADULT SERVICES

 coordination of support services for                       agencies, and provide oversight in
   communication,     vision,     and                        target grant development.
                                                             I also urge RSA to work in
utilization of supported employment                         collaboration with representatives of
    along with appropriate supports                          the National Coalition on Deaf-
    and observation of progress                              Blindness on the implementation of
                                                             the above recommendations and to
requirement     that     transitional                       create dialogue on future initiatives.
   planning begin at age 14

specific     development        and
   coordination of independent living                                      The Missing Link
                                                             In closing, I wish to add that, over
2. Issue a minimum of four 5-year                            the last few years, a body of literature
grants  targeting  model     service                         has been developed urging us to
development and capacity building.                           examine issues of quality of life for
                                                             individuals with disabilities and to
3. Adopt a uniform definition along                          develop quality assurance planning
with a specified coding and tracking                         in program development (Bradley &
system to provide data on the                                Bersani, 1990). In discussing this
experiences of individuals who are                           issue with Mary O'Donnell several
deaf-blind     who     are receiving                         weeks ago, I was reminded of
rehabilitation services.                                     something that happened when I was
                                                             involved in the development of
4.      Develop three multi-state                            community residential programs.
demonstration projects in supported
employment       to    examine     a                         At the time I was involved in a
longitudinal data base of costs,                             struggle with the administration of
benefits, supports, and sensory aids                         one program in trying to develop
in    accessing     employment   for                         specific staff training and program
individuals who are deaf-blind.                              components       to    address   the
                                                             communication       needs   of  four
5.    Target funding to advance                              persons who were deaf-blind. At the
research and training to further                             beginning of one of our meetings,
develop personnel training, program                          when I was determined these issues
models and components, and use of                            would be resolved, the administrator
technology.                                                  handed me a copy of a quality
                                                             assurance review of the program
6. Identify a minimum of one RSA
                                                             conducted by a newly commissioned
staff specialist with people who are
                                                             family/citizen advisory board, which
deaf-blind      to     monitor     the
                                                             incidentally, did not include either
development       and    content    of
                                                             family members or individuals who
individual state plans, provide
                                                             were deaf-blind. The report lauded
technical     assistance   to    state

                    Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Stephen Perreault                                                                               ADULT SERVICES

the program as exemplary. It cited                           Bradley, V.J., & Bersani, H.A. (1990).
capacity measures of community                                Quality assurance for individuals
participation, access to neighborhood                         with    developmental    disabilities.
resources, and variety in recreation                          Baltimore: Paul H. Brookes.
activities. Indeed, these and other
wonderful things were happening,                             Covert, A.M., & Carr, T.S. (1988).
but they were happening without any                           Value-based services for young
interaction with the individuals who                          adults with deaf-blindness: Report
were deaf-blind and living in the                             of a national conference, March 14-
program. There were no modified                               16, 1988. Sands Point, NY: Helen
calendars or systems to help people                           Keller National Center.
understand when activities would
take place or to express opinions or
choices    about    those    activities.                                                     
Several staff in the program were
new, yet there had been no effort in
training in the communication
methods of the individuals. As a
result, interactions around basic life
needs were missed and ignored.

I believe this illustrates the link I
referred to earlier in this paper. That
is the link between what we know
about "best practices" in service
delivery and "best practices" in
providing services to individuals who
are deaf-blind.          We have a
tremendous task ahead of us to forge
that link, in order to translate "best
practices" into daily practices, in
promotion of a higher quality of life
for all individuals who are deaf-blind.


Barrett, S., Carr, T., & Covert, A.
 (Eds). (1987). Community-based
 living options for young adults with
 deaf-blindness:          Philosophy,
 directions, and strategies. Sands
 Point, NY: Helen Keller National

                    Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind

Stephen Perreault                                                                               ADULT SERVICES

                    Proceedings of the National Symposium on Children and Youth Who Are Deaf-Blind


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