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					                               VOLUME 28 * ISSUE NUMBER 9/10   * SEPTEMBER/OCTOBER 2002

               Equity, Opportunity and Inclusion for People with Disabilities since 1975

Customizing Employment    Opportunities
      for People with Disabilities
       SEPTEMBER/OCTOBER          2002

TASK supports the inclusion and full participation of children and adults with disabilities in
all aspects of rheir communities as determined by personalized visions of quality of life.

TASH's focus is on those people with disabilities who:

• Are most at risk for being excluded from the mainstream of society
• Are perceived by traditional service systems as being most challenging;
• Are most likely to have their rights abridged;
• Are most likely to be at risk for living, working, playing, and/or learning in segregated
• Are least likely to have the tools and opportunities necessary to advocate on dieir own behalf;
• Historically have been labeled as having severe disabilities; and,
• Are most likely to need on-going, individualized supports in order to participate in inclusive
communities and enjoy a quality of life similar to that available to all citizens.

TASH accomplishes this through:
• Creadng opportunities for collaboration among families, self-advocates, professionals,
policymakers and other advocates;
•Advocaongfor equity, opportunities, social justice, and rights;
• Disseminating krKwkdgcandmfbtmation;
• Supporr&jfGradBerice th research that translates to excellence in practice;
• # Promc«agindividualized, quality supports;
• Working toward the elimination of institutions, other congregate living settings, segregated
schools/classrooms, sheltered work environments, and other segregated services and toward
replacing these with quality, individualized, inclusive supports;
• Supporting legislation, litigation and public policy consistent with TASH's mission; and,
• Promoting communities in which no one is segregated and everyone belongs.
                                                          FROM THE EXECUTIVE DIRECTOR

                                                     would injure himself if they took them off.         Matthew was kept drugged and restrained on
                                                     They added medication to sedate him, then           the floor for months on end.
                                                     more medication, then leg restraints and,
                                                     finally, a helmet with a face guard. His mother     This independent, funny, charming kid now
                                                     was frantic. Against the protests of his parents,   had to be fed and toileted. The mother of
                                                     Matthew was made to wear these restraints           another resident on the same unit said that
                                                     almost all of the time. They came off only          she saw Matthew at least weekly for six
                                                     after he was asleep. Staff told his mother that     months and was shocked to learn later that he
                                                     the restraints needed to be on all of the time      was ambulatory. She never saw him walk or
                                                     because if they were to take the restraints on      speak. She said, "on those rare occasions when
                                                     and off, Matthew might perceive them as a           he was awake, Matt would reach out his hand
                                                     punishment.                                         to me and try to talk as though pleading for
From the Executive Director                                                                              help." She said that she couldn't get the
BY NANCY WEISS                                                                                           image out of her mind of the affectionate,
                                                                                                         outgoing boy Matthew must once have been.

                                                                                                         Matthew's mother visited him regularly.
Another Tragedy ...                                                                                      Often she was told that they had added
                                                                                                         another medication or upped the dosage of

        t age nine Matthew Goodman went                                                                  one he was on. Eventually, he spent his days
        to live at the Haddonfield, New Jersey                                                           lying on the floor, drugged and unresponsive.
        campus of Bancroft, a residential                                                                He couldn't lift his head. His mother was on
school for children with autism. There his                                                               the phone for hours every day desperately
mother, Janice Roach, family believed that                                                               trying to find another place Matthew could
Matthew would receive a good education and                                                               go and begging with the funding agencies in
appropriate therapy. He lived in an apart-                      Matthew in restraints at Bancroft.
                                                                                                         Pennsylvania to authorize funds for a different
ment on the Bancroft campus for four years.          Matthew was no longer taken to school, saw          kind of service. She told everyone she spoke
He had some behavior problems, but a former          no friends, enjoyed no recreation, went on no       with that Matthew was dying; that the
teacher at Bancroft described Matthew as             more walks, and was offered no activities or        restraints were going to kill him. She was
funny, social, and easily redirected when he         programming. This was the readiness model           dismissed as an overly emotional mother.
got upset. He loved school and social events.        taken to absurdity. It seemed as if Bancroft        Once people heard that this was a kid who
He played games, teased, made up stories,            had no way of viewing Matthew's behavior as         was in restraints all day, no program wanted to
watched videos and was always ready to go for        anything other than a response internal to          take him.
a walk.                                              who he was; no ability to view his behavior as
                                                     a response to what little life he was offered.      Finally, Matthew's mother found a program
During the summer of 2000 Matthew                    Until Matthew demonstrated that he no               willing to take him in Florida. The people
developed a staph infection. He needed               longer needed the restraints, they would stay       from the Florida program who visited him
intravenous (IV) antibiotics. He was hospital-       on. And as long as they stayed on, the              were horrified at what they saw and assured
ized in a community hospital and restrained          behaviors for which they were prescribed            his mother that there would be no restraints
for two months so that he wouldn't pull out          could do nothing but get worse.                     in their program. Matthews mother arranged
the IV. He was terribly upset and begged for                                                             private air transportation through a charitable
the restraints to be removed. When the               Matthew's parents hired consultants who             organization and with relief, scheduled his
hospital staff did remove the restraints for         understood the relationship between behavior        departure from Bancroft for just a few days
short periods he was so distraught he would          and environment. They came to Bancroft              later.
pick at his skin and tear at his ear. When he
                                                     and spent time with Matthew. They
returned to Bancroft, the staff there asked his
                                                     recommended positive behavioral interven-           On Sunday, February 3rd of this year,
parents for permission to put him in their
                                                     tions that they were confident would be             Matthew's mother went to Bancroft to tell
medical unit for just two weeks and to put
                                                     effective. All of them were clear that the          Matthew that it wouldn't be long now. She
arm splints on him during this time so that he
                                                     restraints needed to come off. No changes           had found a place where he could go. He
wouldn't pull at his ear to allow his ear to heal.
                                                     were made to Matthew's services in response         would be leaving on Thursday, just four days
                                                     to these recommendations. The State of              later. Matthew's mother laid down next to
The restraints were never eliminated.                Pennsylvania was paying Bancroft $350,000           Matthew on the floor with her face next to
Matthew would beg to have them off, but              a year and for this almost $ 1,000/day,
staff told his mother that they thought he                                                                                          Continued on page 4

                                                                         PAGE 3                 TASH CONNECTIONS, SEPTEMBER/OCTOBER 2002
                                                          FROM THE EXECUTIVE DIRECTOR

ANOTHER TRAGEDY...                                   others, when physical intervention is needed
Continued from page 3                                the very next questions we should be asking

his. She held his face, caged in his helmet,         • What is frustrating this person?
and promised him that life would be better           • What would he change about his life?
and the restraints that he hated so much             • Does she have a life that is meaningful to
would soon be a thing of the past. She urged         her?
him to hang in there for just a few more days.       • Can she tell us what she wants or needs,
                                                     and are we listening?
But Matthew didn't get the days he needed.
Just three days later, the day before Matthew        Dangerous or disruptive behavior can be
was to leave Bancroft, Matthew's mother got          reduced by making people's lives better — by                           Matthew Goodman
a call from a nurse on the unit at Bancroft          enhancing, rather than sacrificing self-esteem,
who said, "I'm sorry to have to tell you this,       relationships with others, and human dignity.
but we can't find any vital signs." His mother       The use of seclusion and restraint results in          ate use of restraint illegal. See the website for
asked what hospital they were at, ready to run       psychological harm, diminished self-image,             Matthew's Law at <http://
out the door and meet them. The nurse told           loss of dignity, and too often, serious injury or>
her that they were not at a hospital.                death. Post-traumatic stress disorder is
Matthew's mother said to call her right away         increasingly being diagnosed among persons             • Share the website with publications,
from whatever hospital he was taken to — she         who have been subjected to the systematic use          listserves and other information resources.
would meet them there. She waited for a call.        of seclusion and restraint. These procedures
The Bancroft staff never called 911. They            are used far too often for the purposes of             • IN NEW JERSEY: Contact your state
took time to pack an overnight bag with              control, as a punishment, in place of quality          assemblypersons and senators, telling them to
clothes for Matthew. Staff carried him to the        programming, as a substitute for adequate              support A2855, "Matthew's Law limiting the
agency van. They then drove over 50 miles,           skilled staff, or to take the place of a life that's   use of restraints." Tell them that the other two
past 5 other hospitals with emergency rooms,         worth living. We fool ourselves into believing         restraint bills proposed on the same day as
to an out-of-state hospital in Philadelphia.         that such procedures are a necessary or                Matthew's Law do not come close to address-
When they arrived at the hospital Matthew            conscionable part of treatment.                        ing the problem.
was still alive but he was in shock. He was
unconscious but still wearing the ever-present
                                                     There are no federal regulations or legislation        ACROSS THE COUNTRY: Contact the
restraints. He died the next day from sepsis (a
                                                     preventing the kind of abuse Matthew                   bill's sponsor, Assemblyman Eric Munoz,
toxic condition resulting from the spread of
                                                     suffered. The Federal government has no                M.D., at the address or e-mail on the web site.
bacteria), pneumonia and acute respiratory
                                                     reporting requirements for deaths or injuries          Tell him of your support and thank him for
distress. He had been in restraints for sixteen
                                                     while in seclusion or restraint for public or          caring about this important issue. If you have
                                                     private school programs, camps, or agencies            a story to tell about the damage done by
                                                     serving adults with disabilities.                      restraint use or about the efficacy of positive
The state investigation found numerous                                                                      approaches, please tell it! It is vital that we
violations related to Bancroft's failure to follow   Matthew's mother and other advocates are               counteract misleading information from
Matthew's behavior plan. It was also found           working to pass a law in New Jersey that               restraint-dependant programs that are telling
that Matthew's psychologist who prescribed           would make restraint, other than brief                 the New Jersey legislators that restraint is a
the restraints was, in fact, not licensed or         physical intervention for safety, illegal. She is      necessary part of many people's treatment.
certified as a psychologist. He was a psycholo-      fighting to assure that Matthew's death was
gist in title only. The school was fined             not in vain. She is hoping that, as a result of        * Consider starting a similar effort in your
$100,000, less than a third of what they had         this tragedy, laws will be passed that will            state. Call TASH at 1-800-482-8274 for
been paid to care for Matthew over the past          protect others from similarly inhumane and             support.
year, and they continue to operate. They were        dangerous interventions.
just granted a full license to continue
                                                     What can you do?
Restraints and seclusion are not treatment.
Rather, they represent the failure of effective      ••• Learn more about Matthew's Law, the law
treatment. While it is sometimes necessary to        being introduced in New Jersey to make the
physically intervene briefly when someone is         use of aversive techniques and the inappropri-
at imminent risk of hurting him/herself or

                                                                           PAGE 4                TASK CONNECTIONS, SEPTEMBER/OCTOBER 2002
                                                           SEPTEMBER/OCTOBER 2002

                                 Faculty Position In Early Intervention
                            Louis de la Parte Florida Mental Health Institute
      DEPARTMENT OF CHILD AND FAMILY STUDIES - Division of Applied Research and Educational Support

Research Assistant Professor/Research Associate Professor

This position is a grant-funded, 12-month faculty position for an early intervention research and demonstration project focused on providing
positive behavior support to young children and their families in the Part C service delivery system. This position will coordinate the daily activities
of project staff and direct project activities. This position will work in collaboration with a research leadership team (Glen Dunlap, Lise Fox) and
project personnel from related research and training projects including the OSEP-funded Center for Evidence-based Practice: Young Children with
Challenging Behavior. Additional responsibilities with this position will include conducting research, grant development, writing for publication,
workshop and conference presentations, and maintaining familiarity with current research in early intervention for young children with challenging
behavior and positive behavior support.

This position is within the Division of Applied Research and Educational Support. The Division of Applied Research and Education Support
(DARES) is directed by Dr. Glen Dunlap and houses over 20 externally funded projects in the areas of disabilities, early intervention, autism, family
support, and positive behavior support with an annual operating budget of approximately $8 million. The Division employs over 100 faculty and
staff who are actively involved in research and program development efforts to improve the lives of children and families who face challenges due to
developmental disabilities, challenging behavior, or poverty

Minimum qualifications: Doctorate in special education, early childhood education, child development, psychology, communication disorders or
related field. Knowledge of intervention approaches in social-emotional development and experience working with young children with develop-
mental delays.

Preferred qualifications: Experience in program leadership of early intervention research, demonstration, or community programs. Experience in
infant mental health or positive behavior support. Experience in staff supervision, providing training and technical assistance to early educators and
families, working collaboratively with families and outside agencies, professional workshop and conference presentations, writing grant proposals,
writing for publication, and conducting research.

Note: Individuals hired for these positions will be required to undergo a fingerprint and background check.

Application Deadline: December 13, 2002. When applying for the position, please specify Position #11827

Mail, fax, or electronically transmit cover letter, vita, and a list of three references to: Patricia White, FMHI-USF/MHC2113A, 13301 Bruce B.
Downs Blvd., Tampa, FL 33612-3899, Fax: (813) 974-6115, E-mail:

  The University of South Florida is an Affirmative Action/Equal Opportunity/Equal Access Employer. For disability accommodations, please call:
                                                         (813) 974-4612; TDD 974-2218.

Early Childhood Special Education
The University of Wisconsin Oshkosh College of Education and Human Services has an open position in Early Childhood Special
Education (Position 11 la.0203, Assistant/Associate Professor, tenure-track, academic year).

Responsibilities include teaching undergraduate and graduate courses in a collaborative program for early childhood special education and
early childhood elementary education, supervision of related field experiences, professional development, research, scholarly activities, and
service. A doctorate in Special Education or a related area (dissertation written prior to September 2, 2003, with a defense scheduled no
later than December, 2003) is required. Prior experience teaching young children with disabilities is essential. Review of applications will
begin on January 10, 2003 and continue until position is filled.

Applicants should submit a letter of application specifying position number, resume, statement of teaching philosophy, transcripts, and
three current letters of recommendation to: Dr. Michael Ford, Associate Dean, College of Education and Human Services, University of
Wisconsin Oshkosh, Oshkosh, WI 54901. The University of Wisconsin Oshkosh is an Affirmative Action/Equal Opportunity Institution.

                                                                       PA6E 5                 TASH CONNECTIONS, SEPTEMBER/OCTOBER 2002
                                                                GOVERNMENTAL AFFAIRS

                                                      change in the bill that would provide states      designed to reduce the number of youngsters
                                                      the option of offering coverage through           who require the provision of special education
                                                      either their Medicaid or CHIP (Children's         and related services for "emotional distur-
                                                      Health Insurance Program) programs. It is         bances."
                                                      hoped that Senate and House discussions will
                                                      result in a compromise that will mean the         The IDEA Paperwork Reduction Act of 2002
                                                      Family Opportunity Act will be passed in          was introduced by Representative Ric Keller
                                                      the House when Congress returns after the         of Florida. This bill has several provisions
                                                      just-concluded mid-term elections.                aimed at "relieving teachers, administrators
                                                                                                        and related service providers from excessive
                                                                                                        paperwork burden" and to "reduce time spent
                                                                                                        by teachers on non-instructional activities."
                                                                                                        The bill proposes a set of "strategic proposals
                                                                                                        that are aimed at achieving its purpose:
                                                      Proposals to Amend IDEA are
                                                      Introduced in Congress
                                                                                                        •• Requiring the Secretary of Education to
                                                                                                        develop and disseminate "streamlined" models

                                                             everal bills have been introduced in
                                                                                                        of documents for Individual Education
                                                             the House of Representatives. Repre-
                                                                                                        Program (IEP) development, procedural
                                                             sentative Patrick Kennedy of Rhode
                                                                                                        safeguard notices, and prior written notice
                                                      Island introduced the "Early Intervention
                                                      Improvement Act" (H.R. 5076) and the              provisions to parents and guardians
         UNFINISHED                                   "Reducing Special Education through
                                                      Prevention Act" (H.R. 5352) in September.         • Permitting states to let their local school
          BUSINESS                                    The Early Intervention Improvement Act is         divisions, with the informed and written
                                                      aimed at ensuring that all children under the     consent of parents, to develop a 3-year IEP
  Lawmakers Negotiate Family                          age of 3 years who are involved in a "substan-    which will contain three year goals, some
   Opportunity Act                                    tiated case of child abuse and neglect" are       coinciding with what is called "natural
                                                      referred to Child Find for assessment and, if     transition points" for the student, as well as
          Negotiations over the Family                necessary, early intervention services. In        annual goals for measuring progress in the
           Opportunity Act (S 321), a bill            addition, the bill targets an additional group    general curriculum. Further, a "comprehensive
           that would permit middle income            of infants and toddlers who may be at risk of     review and revision" of the IEP would only
      families with children who have significant     developmental delay or disability by virtue of    occur at those "natural transition points"
disabilities to buy into the Medicaid program         their "family condition" which could include      rather than annually.
       continuing. Rep. Pete Sessions (R-Texas)       diagnosed serious maternal depression,
       en meeting with House and Senate staff         confirmed parental substance abuse, or             • Increasing emphasis on whether or not a
to try to reconcile the current version of the        documented family violence.                       student receiving special education services
         "Family Opportunity Act of 2002" with                                                          and supports is making satisfactory progress
several measures supported by House Energy                                                              towards achieving the three-year goals (as
                                                      TASH has expressed concerns about the
          Commerce Chair Billy Tauzin (R-                                                               measured by the annual goals, possibly).
                                                      wording of the additional "at risk" category as
                                                      well as the assumptions about the capacity of
                                                      both current Child Find and early interven-       ••• Grant waivers of unspecified "paperwork
Under the Senate bill, children with disabili-        tion providers and state mental health            requirements" for 4 years to no more than ten
ties in families with incomes up to 250%              systems to diagnose and treat mental illness in   states for the purpose of demonstrating
of the federal poverty level, or $45,000 for a        infants and toddlers who may be referred to       "effectiveness" of various proposals in reducing
family of four •, would be eligible receive
                would be eligible to to receive       them.                                             "paperwork" and non-instructional time spent
Medicaid benefits. Current income eligibility
             benefits. Current income eligibility                                                       by teachers in compliance with IDEA.
limits are 133% of the poverty level for
             3 3 % of the poverty level for           The Reducing Special Education Through
children younger than ageage 6 and 100% of
             younger than 6 and 100% of                                                                 In addition, the bill gives local school officials
                                                      Prevention Act proposes to improve school-
the poverty level for childern ages 6 to 18
              level for children ages 6 to 18.                                                          "discretion" about whether any member of the
                                                      based interventions for students who may
The bill would give states the option of
             would give states the option of                                                            IEP team can be "excused from meetings
                                                      develop emotional or behavioral disorders.
changing those eligibility qualifications for
               those eligibility qualifications for                                                     unless the parents or guardians object.
                                                      Specifically, the proposal amends Part D of
children with disabilities. It is estimated that
                disabilities. It is estimated that                                                      The bill continues in this manner, leading
                                                      the IDEA to allow a state or local education
about:200 0additional children with
        200,000 additional children with                                                                TASH to wonder how much "burden" is
                                                      agency to apply for a three-year grant to
disabilities would be eligible for coverage
                     be eligible for coverage         implement programs, strategies and services
under the expansion. Rep.Tauzin supports a
                                                                                                                                     Continued on page 7
                                                                        PAGE 6               TASH Connections, SEPTEMBER/OCTOBER 2002
                                                             GOVERNMENTAL AFFAIRS

Continued from page 6

going to be relieved by the micro-managing of
every interaction between families and school
personnel in planning educational supports                                                             TASH's work is dependent on the
and services and in protecting the civil rights                                                        financial assistance of our donors and
of students with disabilities. And, of course,                                                         members. We wish to acknowledge
TASH strenuously opposes any proposal that                                                             the generous donations of the follow-
would "strip down" those rights and fail to        restricting his vision (see Nancy Weiss's article   ing individuals:
fully inform parents and students of their         beginning on page 3).
procedural safeguards.                                                                                          Charlene Brandi
                                                   New Jersey Assemblyman Dr. Eric Munoz has                    Mary Braverman
This bill is significant because the co-sponsors   introduced legislation that would severely                    Diane Browder
are Representative John A. Boehner (Ohio),         restrict the us of restraints in facilities for              Addie Comegys
who is Chairman of the House Committee on          children and adults with developmental                          Carolyn Das
Education and the Workforce, and Represen-         disabilities and traumatic brain injury to a                  Larry Douglas
tative Mike Castle, who chairs the Subcom-         narrowly defined set of emergency only                        June Downing
mittee on Education Reform, which has              circumstances. Under this law, restraints and              Kathleen B.Eklund
jurisdiction over special education programs.      seclusion could not longer be written into                    Chris Flanagan
TASH members are urged to make note of the         IEPs and Individual Habilitation Plans as                   Julie M. Flanagan
House Education and Workforce Committee            "treatment."                                                Patricia Fratangelo
web site:                                                                            Globe Star, LLC
Comments about changes to IDEA are still           For further information and updates about                   Nancy Hartshorne
being solicited and taken. In addition, the        Matthew's Law visit http://                                    Sue Henshaw
web site is an accurate and timely source of                                    MaryHoskin
information about education issues moving          To help TASH in our fight against abuse and                    Harold Isbcll
through the Congress.                              restraint of children and adults with disabili-               Judy Itzkowitz
                                                   ties, contact Nancy Weiss (               Kristy Kirkpatrick
                                                   Jamie Ruppmann (                           BethLakretz
                                                                                                               Mary Ann Lauder
                                                                                                                 Laurie Lehman
TASH Continues to Oppose                                                                                         Lisa Lieberman
                                                                                                               Sharon Lohrmann
use of Restraints, Seclusion                         TASH in Action! Is your vote important?
                                                     Are you registered? How does TASH                        Anthony McCrovitz
and Abuse                                                                                                       Kathy Masterson
                                                     decide what issues to support and what
                                                     issues to oppose? What's happening with                NLM Family Foundation

T        ASH Executive Director, Nancy Weiss
         along with Pat Amos of the Family
         Alliance to Stop Abuse and Neglect,
New Jersey TASH members and 200
advocates rallied at the New Jersey State
                                                     MiCASSA, and when is the Congress going
                                                     to do something about housing and people
                                                     with disabilities?

                                                     These questions and more will be answered
                                                                                                                 Janice L.Neefe
                                                                                                                  Joann E. Noll
                                                                                                                 Daniel Nyarko
                                                                                                              Leah M. Preston Ing
House on Monday, October 7. Speakers                 if you drop by the TASH in Action!
                                                                                                                Marianne Roche
included Janice Roach, mother of Matthew             exhibit at next month's annual conference
                                                     in Boston. Talk with Governmental                     Schreck Family Foundation
Goodman, who died on February 6 of this
                                                     Relations staff and members who are                          Randy Seevers
year. Matthew was being "treated" at the
                                                     interested and knowledgeable about policy                   Debra Shelden
Bancroft School. Prior to his death, Matthew
                                                     issues that effect the live of people with                 Martha E.Snell
spent literally months in physical arm
                                                     disabilities. For conference information,                 Cynthia F. Sutton
restraints and a helmet with a darkened visor        including a registration form, visit                         Charles Zeph

                                                                       PAGE 7                 TASH CONNECTIONS, SEPTEMBER/OCTOBER 2 0 0 2
                                                2002 TASH ANNUAL CONFERENCE

                                              Research to Educational
                                               Practice: A Conference
                                               within the Conference
                                               for Present and Future
                                             Teachers and Practitioners
                                               Sheraton Boston and Hynes Convention Center
                                                         Saturday, December 14th
                                                            9:00 am - 3:30 pm

Special Saturday Only registration fee:
$59.00 for TASH members
$89.00 for non-members
This special Conference within the Conference is open to all full conference registrants at no additional charge. To register for
the Conference within the Conference, use the registration form located on the TASH web site at <
ence/regonline.htm>, and select the "Saturday Only" category.

   At the 2002 TASH Annual Conference, the Saturday Conference within the Conference features a series of dynamic
 sessions focused on practical, day-to-day strategies for translating current research knowledge into educational practices
                     that enrich the lives of students with significant disabilities and their families.

Sessions will afford participants the opportunity to hear about the most progressive practices directly from nationally
known authors in the field. Featured presenters:

                                           Rick Albin - Positive Behavioral Support
                                          Glen Dunlap - Positive Behavioral Supports
                                          Mary Falvey - Curriculum and Instruction
                                         Chris Kliewer - Literacy and Communication
                                         Diane Ryndak - Curriculum and Instruction
                                           Marti Snell - Curriculum and Instruction
                                                          and more!

Participants will have the opportunity to select sessions from one of three strands: Communication and I.iteracy, Curricu-
lum and Instruction, and Positive Behavioral Supports. Lunchtime will include a poster session in which graduate
students will display the results of their research and other innovative projects focusing on students labeled with severe

For an updated listing of conference sessions, accommodation, travel, child care, and other information, as well as the
conference registration form, please visit

                                                              PAGE 8           TASH CONNECTIONS, SEPTEMBER/OCTOBER 2002
                                                           2002 TUSH ANNUAL CONFERENCE

T    he following represents a partial listing
     of the employment related sessions
scheduled throughout the upcoming TASH
Annual    Conference.

 This year's conference, "Our Quest: Oppor-           Status Quo, Stigma in Employment                     Thursday. December 12, 2002
tunity, Equality, Justice" is scheduled               Speaker: Sarah Berger                                3:30 pm-4:30 pm
December 11-14 2002 (preconference                              What are your stigmas in hiring            Incorporating Social Security Work Incentives in
workshops on December 10, 2002) in                    persons with mental illness? This interactive        Transition Planning
Boston, Massachusetts at the Sheraton Boston          workshop will test your marketing, personal          Speaker: Ellen Condon
                                                      perceptions, and accommodations skills.                          Social Security Work Incentives are an
and the Hynes Convention Center.
                                                                                                           effective resource in Transition Planning.
                                                      Thursday,December 12, 2002                           Student case studies which illustrate the
 For a listing of sessions in other topic areas,      11:30 a m — 12:30 pm                                 utilization of work incentives to promote choice
 including strands, exhibits, and special             Opportunity, Equality and Justice: Maine's           and consumer controlled supports will be shared
 events, please visit           Systems Change Efforts in Employment Supports        along with strategies developed by schools and
ference. Please note that this is a preliminary       Speakers: Deborah A. Gilmer, Alan Kurtz, Kathy       communities to access these resources.
 schedule that is subject to change.                  Son, Lenny Berry, James Meehan, Brenda
                                                      Harvey, Mel Gleason                                  Thursday. December 12, 2002
                                                                  This panel presentation will share       4:45 pm-5:45 pm
Employment Strand                                     information on a number of systems change            Closing Up Shop: It's the Process, Not the Product,
Thursday and Friday                                   initiatives undertaken in Maine to build the         That Counts
Convention Center Rooms 201 and 202                   capacity of community rehabilitation agencies to     Speakers: Paul Dickin, Phil Smith, Bryan Dague,
Strand Coordinator: John Butterworth                  implement a new vision of employment supports,       Mike Moody, Alan Bushey, Paul Bakeman
This strand features sessions that cover all the      including curriculum development, a number of                   Come learn about what it was like to
important issues related to the employment of         statewide staff development activities and policy    close down the last sheltered workshop in
people with disabilities. Sessions covering policy,   change.                                              Vermont! Self-advocates, family members, staff,
systems, and personal perspectives will be held
                                                                                                           and other stakeholders will describe an ongoing
on both days in Room 201. Those sessions
                                                      The Right Person for the Job: Developing Business    process of conversion of a small, family-centered
focusing on practice will be held in Room 202.
                                                      Capacity to Include Employees with Autism            agency.
                                                      Speakers: Bud Cooney, David Hagner
                                                                 This session will present findings from   You Can Get There From Here: Finding Your
                                                      a one-year project developed to improve the           Way After High School
Wednesday, December 11, 2002                          capacity of employers successfully include           Speakers: Beth- Anne Dabek, Erica Sandelin
10:00 am-4:00 pm Pre-Conference Session               employees with autism. The essential compo-                     The journey from high school to adult
 The Ticket To Work: What Are The                     nents for success reported by 14 employers along     life can be both challenging and exciting. Come
Opportunities?                                        with a training module developed for potential       learn what students from five urban high schools
Speakers: David Hoff, Elena Varney                    and current employers of persons with autism         in Massachusetts are doing to pursue their
            The Ticket to Work, which is              will be presented.                                   dreams of working and recreating in their
currently being introduced by the Social Security                                                          communities.
Administration, provides a potential opportunity      Thursday.December 12, 2002
for people with disabilities to have increased        2:15 pm — 3:15 pm                                    Friday, December 13, 2002
choice regarding services that will help them find    Integration of People with Disabilities into One-    8:00 am-10:15 am
and keep a job. Attendees at this workshop will       Stop Systems: A National Progress Report             Promoting Meaningful Daytimes: Strategies and
learn about the Ticket program, the opportuni-        Speakers: David Hoff, Sheila Fesko, Lora             Issues
ties and challenges it presents, and ideas for        Brugnaro, Allison Cohen                              Speakers: Pam Walker, Patricia Rogan,
utilizing it to enhance individual opportunities                  One of the newer strategies for          Elizabeth Obermayer, Jeffrey L. Strully, Jennie
and empowerment.                                      meeting employment needs of people with              Todd
                                                      disabilities is use of One-Stop Centers. Is the                 Despite great strides toward integrated
Thursday 10:15am-l:15pm                               generic workforce development system really          employment, many adults remain in segregated
Pushing the Employment Agenda: State Perspec-         working for people with disabilities? This session   settings or bored and isolated at home. This
tives                                                 will look at current progress and future trends.     presentation discusses support for a wide variety
Speakers: John Butterworth, Allison Cohen,                                                                 of daytime pursuits, including: paid and
Dana Scott Gilmore, Deborah Metzel                    Social Security Benefits: Making Sense of the Maze   volunteer work, post-secondary education, and
           This session will focus on the factors     Speaker: Elena Varney                                community connections.
that contribute to high performance in inte-                     As people with disabilities seek
grated employment among states. Research              employment, the impact of income on Social           Friday, December 13, 2002
findings will be presented, followed by a panel of    Security Benefits in often a major concern. This     10:30 am-11:30 am
stakeholders from several states who have been        session will cover: the differences between SSI      Do What You Love....Love What You Do
directly involved in facilitating systems-level       and SSDI; how employment impacts benefits;           Speakers: Ken Renaud, Joshua Joyal, Delia Boro,
change.                                               work incentives available; and tips for dealing      Paula Ortega, Charlotte Testa
                                                      with SSA.
                                                                                                                                        Continued on page 10

                                                                           PAGE 9                 TASH CONNECTIONS, SEPTEMBER/OCTOBER 2002
                                                           2002 TASH ANNUAL CONFERENCE

Continued from page 9                                 What is Our Obligation to People Who Do Not           Saturday, December 14, 2002
                                                      Seem to Want to Work                                  10:00 am-11:00 am
           This session looks at the PAL              Speakers: Jeannine Burns, Aimee Pavlak, Matt          How To File A Winning ADA Employment
Employment Information Network, an initiative         Slosek, Melissa Stefano                               Discrimination Complaint
that is comprised of individuals with disabilities                People with disabilities may not want     Speakers: Kathryn Moss, Tia Nelis, Joy Weeber
who are successfully employed. We will                to work due to fear of failure, undesirable                       Under Title I of the ADA, individuals
demonstrate how these individuals play an             employment options, no positive work experi-          who have experienced employment discrimina-
important role in the transition process by           ence, and low expectations. This session will         tion based on a disability may file a complaint.
sharing their personal success stories with high      explore these and present strategies to create        This workshop will teach participants about how
school students with disabilities and by serving as   positive experiences for people to work               to file a winning complaint.
mentors. They encourage the students to choose        successfully.
jobs that utilize their talents and skills.                                                                 The following Poster Sessions related to
                                                      Friday, December 13, 2002
                                                                                                            employment are scheduled from 8:00-10:00 am
When Existing Jobs Don't Fit: Job Creation for        2:45 pm-3:45 pm
                                                                                                            on Saturday. December 14. 2002.
People with Significant Barriers to                   Accessing Community Transportation, Inc.-Apeer
Employment                                            travel training Self Directed Support
                                                                                                            Creating Vocational Opportunities for Students
Speakers: Melanie Jordan, Kimberly O'Neil             Corporation
                                                                                                            with Disabilities
            "Pre-existing" job openings often do      Speakers: John Susa, Terri Trautman, Connie
                                                      Susa, Mark Susa                                       Speakers: Chris Peltier, Laurel Peltier
not meet the needs of individuals with significant
                                                                  Despite multiple disabilities, Mark                   This multimedia workshop will present
disabilities. This interactive session will offer
                                                      Susa is president of a business that teaches others   various approaches to creating community-based
practical information, strategies, and many
                                                      with disabilities how to use public transporta-       vocational opportunities through collaborations
examples and success stories related to creating
                                                      tion. Learn how his school to career transition       with schools and businesses. This presentation
and restructuring jobs to meet distinct interests
                                                      and state-funded supports were used to create         will utilize group exercises to inspire creative
and needs.
                                                      this self directed support corporation.               thinking about students' careers and will engage
                                                                                                            the participant for positive action.
Friday, December 13, 2002
11:45 am-1:30 pm                                      One Stop Career Centers: A Resource for All Job
                                                      Seekers                                               It's Not About Jobs, It's About Income
TASH Town Meeting
                                                                                                            Speakers: Darcy Smith, Doreen Rosimos
Speakers: Martin Gerry, Social Security               Speakers: Cynthia Thomas, Pauline Donnelly,
                                                      Lara Enein Donovan                                               This presentation will focus on how
Administration, Stephanie Lee, OSEP, Judith
                                                                                                            Doreen Rosimos and Darcy Smith have made the
Heumann, The World Bank, Anne C. Smith,                         This session will provide an overview
                                                                                                            production of I N C O M E happen across the
Zuhy Sayeed and other leaders will join Jamie         of the One Stop Career Centers and how they
                                                                                                            country. They will discuss case studies, and the
Ruppmann, TASH Director of Governmental               can be used by individuals with disabilities
                                                                                                            importance of engaging the community in your
Relations, to discuss the current state of the        seeking employment. Promising practices will be
                                                                                                            life and enterprise. Combining Joy, Permission and
states in disability policy.                          described to provide attendees with a better
                                                                                                            Investment has lead to life altering experiences for
                                                      understanding of the system and what they can
                                                                                                            many individuals. We will engage you with lively
Friday, December 13, 2002                             do to make it work for them or individuals they
                                                                                                            conversation and a different view to bring income
l:30pm-2:30pm                                         support.
                                                                                                            into people's lives, no matter the challenges.
Building Community Connections: A Networking
Approach for Transition Age Students                  Friday, December 13, 2002
                                                      4:00 pm-5:00 pm                                       Let's Get Working! How to Transform your
Speaker: Colleen O'Mara Condon
                                                                                                             Vocational Department into Cutting Edge
            This session offers an overview of a      It's a Job You Really Wanted, But Now Are You
                                                                                                            Program Emphasizing Person-Centered Planning
workshop on how students can use networking,          Happy?
                                                                                                            Speakers: Kate Clark, Stan LeRoy, Jo-Ann
the most effective job or career search strategy.     Speakers: Bruce M. Menchetti, Elizabeth
It will include sample exercises as well as discuss   Haines, Lori Garcia, Renee Llewellyn
                                                                  In this session you will learn how                    This presentation will highlight the
the facilitator's role in empowering students to
                                                      people with disabilities helped develop a job         areas that we have developed in our program
use their networks.
                                                                                                            including assessment and evaluation, job
                                                      satisfaction survey to guide employment services.
                                                                                                            preference inventory, employability skills
Optimal Roles of Job Developers and Job Coaches       Most importantly, however, you will hear from a
                                                                                                            curriculum, career development, and supported
to Promote Natural Supports in the                    self-advocate, as she discusses what is important
                                                                                                            employment. The presentation will include
Workplace                                             to her personal job satisfaction.
                                                                                                            strategies to involve family and friends and the job
Speakers: Carl Cignoni, Brian Patingre,                                                                     seeker for future planning within the IEP Vision
Madonna Trotter                                       Sometimes I Get Fired: Co-memoir Eugene
                                                                                                            Statement. It is our hope that individuals who
           Natural supports are a determinant of      Marcus' Supported Work Experiences
                                                                                                            attend our conference will take away multiple
success for people with disabilities at work.         Speakers: David Marcus, Eugene Marcus
                                                                                                            resources that they will be able to utilize easily
Many roles job developers and coaches assume                      Join this session as father and son
                                                                                                            upon conclusion of our presentation.
either promote or discourage natural supports,        discuss Gene's life experiences in regards to
often unawares. Participants will examine the         supported work. Using facilitated communica-
optimal roles to promote natural supports.            tion, the presenter will discuss his successes and
                                                      failures in the work place. Come to this
                                                      interactive session prepared to ask questions.                                    Continued on page 22
                                                                           PAGE 10               TASH CONNECTIONS, SEPTEMBER/OCTOBER 2002
                                               2002 TASH ANNUAL CONFERENCE

                                Through                               Our Lenses
                               BY ABBY L.W. CROWLEY

                                      unique program at the Lt. Joseph P. Kennedy Institute in Washington, D.C. is expanding
                                      career options for people with developmental disabilities. The U.S. Department of Labor, in
                                      its Occupational Outlook Handbook, paints a promising picture of growth in need for people
                               who can operate cameras and process photographs using traditional and digital technologies.

                               Careers in portrait, commercial, industrial and news photography offer about 161,000 jobs nation-
                               wide. The entertainment market, particularly the cable industry and the Internet, has increased the
                               demand for camera operators. The increase in availability of one-hour processing facilities in malls,
                               supermarkets and retail outlets provides an additional 42,000 jobs nationwide.

In most cases, employers prefer applicants for these jobs who have had some experience in the field. Albert "Al" Price, an experienced
photographer and a person with many years of experience working with people with developmental disabilities, thought that he
could combine his two areas of expertise to develop a new kind of training program within Kennedy Institute's employment services

Starting with a $3,000 investment, he purchased ten cameras and 500 rolls of film and started working with a group of eight adults
in the basics of 35mm black and white photography in a 16-week, 250-hour program called Through Our Lenses. In the beginning,
he had the students' film developed and printed commercially. Their first exhibit, My First Exposure, garnered acclaim and media
exposure for the program. This led to donations and grant opportunities to purchase darkroom equipment and supplies. Grants and
donations also allowed Mr. Price to take his group to New York City to take pictures and to see the Andy Warhol Perfecting Mankind
exhibit at the International Center of Photography.

When you meet Mr. Price, you are immediately struck by his passion and enthusiasm for his program and the participants. His
excitement and willingness to "just pick up the phone" and ask for what he needs have been key to the program's success. The
Washington Post was a major benefactor, providing photographic equipment. Mr. Price was able to recruit members of The Exposure
Group, a Washington-based African-American photography association, to mentor his students. Photographic printing and framing
for the exhibit were all donated. For the trip to New York, Amtrak donated train tickets and a company donated a limousine for the
day. The program received grants from Kodak and the District of Columbia Arts and Humanities Council. Most recently, the
program received a substantial grant from the District of Columbia Youth Investment Trust Corporation. This grant will provide a 2
1 /2-month training program for three cohorts often individuals from 14-21 years old. Mr. Price's current ambition is to acquire a
photographic print machine so that his students can have hands-on experience that can turn into marketable skills in the one-hour
photo processing market.

Mr. Price has taken his training one step further. He has developed a partnership with CVS Pharmacy and has begun to place people
in competitive employment in their photo labs. He has plans to develop relationships with other photo labs as well.

Mr. Price is quick to point out that the benefits of building skills in photography are not only in the area of employment. People also
have become photography hobbyists and find photography to be an excellent vehicle for making connections with people and for
personal expression. He has seen self-esteem and social skills enhanced by involvement with photography. Program participants have
also developed an appreciation for photography and art as a result of their involvement.

These new photographers can best describe the value of having access to training in the field of photography. Kelly, age 18 says, "I
like using the camera to take photographs of outdoor scenes and people having fun. I like to show off my photographs." Stormy, age
21, who is now competitively employed at a one-hour photo lab, says, "I think I found my talent. I surprised myself because I didn't
think I had a talent." And finally, Lisa, age 23, expresses her hopes: "I would like to be a photographer one day for the Washington
Post or for the President of the United States." Through Our Lenses has the power to make dreams like these come true.

                                                                                                                      Continued on page 30

                                                               PAGE 11               TASH CONNECTIONS, SEPTEMBER/OCTOBER 2002
                                                       UTILIZING PERSONAL NETWORKS

                                                                              Three stories           members are professionals such as school
                                                                              Many of the             counselors or teachers. Informal network
                                                                              students and            members are people close to you, like your
                                                                              parents who             friends, family members, and others you may
                                                                              participated in ICI's   have met in social organizations, sports teams,
                                                                              study described         religious organizations, or even in your
                                                                              how they used and       neighborhood.
                                                                              depended upon
                                                                              their personal          How can a personal network help to develop
                                                                              networks — both         self-determination?
                                                                              formal and informal     Personal networks can guide self-detetmined
                                                                              — to figure out         people as they solve problems and support
                                                                              what they need and      them when important decisions are made.
                                                                              want, and help          People from the personal network help teach
                                                                              them discover, reach    new skills as goals are achieved. Self-deter-
             Using Personal Networks to                                       for, and achieve        mined people learn to plan and coordinate
            Achieve Goals as You Prepare to                                   their personal goals.   their lives with help from these important
                                                                              In addition, these      people. Members from the personal network
             Leave High School                                                personal networks       provide more and more opportunities for the
                                                  helped to develop self-determination in the         self-determined individual to make decisions
BY JAIMIE CIULLA TIMMONS,                         young adult. The three stories that follow          and learn new skills on his/her own.
MAIREAD MOLONEY, DANIELLE                         illustrate ways that students used personal
DREILINGER, AND JENNIFER                          networks to help them achieve their goals, and
                                                                                                      (The stories that follow are based on conversa-
SCHUSTER                                          sometimes, how they could be better used to
                                                                                                      tions with high school students and their parents
                                                  make their goals a reality. These examples also
                                                                                                      and/or guardians. Each student and his/her
                                                  illustrate how personal network members can
                                                                                                      parent/guardian were interviewed for approxi-
Introduction                                      help a young person achieve self-determina-
                                                                                                      mately 45 minutes. A total of nine students and

          etting ready to leave high school can   tion.
          be both exciting and stressful. Young                                                       eight parent/guardians (6 mothers, 1 father, and
          adults with disabilities need to figure                                                     1 foster mother) were interviewed. Please note
out what their interests are and develop goals    What is self-determination?                         that names have been changed to protect their
for the future. Decisions need to be made         People who have self-determination know             privacy.)
about where the young adult might live, what      what they want and how to get it. They know
kind of job he/she might have, or where he/       a lot about themselves and have a clear vision       Story 1: "I found what I needed to move
she may continue his/her education. New life      for the future. Self-determined people can          forward "
options create opportunities for more             make decisions for themselves, and know              Heather, a recent high school graduate with
decision-making.                                  what they have to do to achieve their goals.         physical and special health care needs,
                                                  They feel independent and in control of their        expected to have a full-time job, live with her
                                                  life plans. A self-determined person does not        boyfriend, and someday have kids. She felt
Although young adults with disabilities may
                                                  need to know all the answers, but he/she             very strongly about the value of work. As she
become more independent during this time,
                                                  knows that there are a variety of options in life    said, "I want to work 100%. I want to work
the support and encouragement of others
                                                  that are available. They understand their own        for my money." Heather's mother, however,
remains crucial for success. The Institute for
                                                  strengths and weaknesses, try to solve               was concerned that a full-time job would have
Community Inclusion (ICI) interviewed high
                                                  problems, and make their own choices. Self-          a negative effect on Heather's Social Security
school students with disabilities and their
                                                  determination is related to self-esteem and          benefits.
parents and/or guardians. ICI asked these
                                                  confidence because in order to pursue your
families about their plans for the future and
                                                  goals, you need to feel that you can be
how others may have influenced their
                                                  successful in your endeavors. In addition, self-
decisions. In addition, both students and their                                                             Self-determined people may not
                                                  determined people know how to find help
parents were asked to tell ICI about important
                                                  when they need it. This help usually comes                 necessarily know exactly what
decisions they have made as a family, and who
they depend on when there is a problem and
                                                  from their personal network.                             they want at all times, and their
support may be needed.                                                                                    visions may change from one day
                                                  What is a personal network?                             to the next, but they know how to
                                                  A personal network is basically everyone that a                 get what they need
                                                  person knows. This includes both formal and
                                                  informal network members. Formal network
                                                                      PAGE 12              TASH
                                      UTILIZING PERSONAL NETWORKS

Using Personal Networks to        • Heather makes substitutions for gaps in
Achieve Goals as You Prepare to   her personal network. Because she feels her
                                  mother was not supportive, she finds other
Leave H i g h School              people (her brother, boyfriend, and school
Continued from page 12
                                  personnel) to help. Positive network members
                                  balance out other members who have
                                  • Heather uses a combination of informal
                                  network members (brother and boyfriend) as
                                  well as formal network members (school
                                  personnel, counselor from VR) to reach her
                                  employment goals.
                                  9 Heather's informal network provided both
                                  encouragement and specific help (like filling
                                  out applications).

                                  Story 2: Shared goals and a champions
                                  support bring success
                                  Shantelle, a recent high school graduate with a
                                  psychiatric disability, worked part-time while
                                  living at home. A large, dependable network
                                  of both formal and informal members helped
                                  support her as she developed her goals. This
                                  included a close friend, teachers, a therapist,
                                  and a neighbor who employed her as a
                                  babysitter. Shantelle talked to a close friend
                                  and teachers about her decisions for a career,
                                  and a therapist about more personal problems.

                                  Most importantly, Shantelle has had great
                                  support from her mother. They agreed in their
                                  hopes and goals for her future. Shantelle said
                                  her mother supported her to reach greater
                                  independence: "She doesn't suggest anything.
                                  She thinks it should be my concern and my
                                  issues what I should do. She thinks I am
                                  responsible for myself. She lets me make my
                                  own decisions...[but] if I don't know if it's a
                                  good or bad idea I ask for her opinion."
                                  Shantelle's mother confirmed this by saying
                                  "if she says she wants to try something I don't
                                  stop her.... We let her make her own decisions.
                                  The only way you are going to learn is to
                                  make the mistake on your own."

                                  The only challenge Shantelle's mother saw
                                  that could stand in Shantelle's way was her
                                  tendency towards low self-esteem. This
                                  motivated her to surround Shantelle with
                                  support. Shantelle's mother gained insight
                                  through talking to teachers, the family doctor,
                                  church members, and even neighbors. "That's
                                  what it takes, you know. Keeping that self-
                                  esteem up and saying, 'We know you can do
                                  it.'" Shantelle's family and friends were quite
                                  proud of her. Shantelle's mother best summed

                                                    PAGE 13               TASH CONNECTIONS, SEPTEMBER/OCTOBER 2 0 0 2
                                                        UTILIZING PERSONAL NETWORKS

Using Personal Networks to                         crucial first step to being self-determined.
                                                   • Carlos's family helps to develop self-
Achieve Goals as You Prepare to
                                                   determination by allowing him access to his
Leave High School                                  SSI checks. Carlos's mother uses SSI as a tool to
Continued from page 13
                                                   increase independence, learn the value of
                                                   money, and teach financial planning.
                                                   However, Carlos's mother is responsible for
standards might be too high. "He doesn't           coordinating the support from his formal
want to take any suggestions.... I don't think     network rather than Carlos doing it himself.
he understands [that] he doesn't get to pick       • Carlos and his family use formal network
and choose." She also doubted whether he           members to help him reach his goals.
would be able to pursue the jobs he liked. "It's   However, Carlos and his mother may not
kind of, like, out of his grasp, but I don't say   know how useful informal network members
that."                                             such as friends and family could be. A broader
                                                   range of informal contacts could give Carlos a
Carlos and his mother used two formal              fuller array of assistance and help him get a
network members to help him succeed. This          clearer focus on his goals, skills, and opportu-
included a professional from a private             nities.
organization and a counselor from the              • There is a lack of alignment between
Department of Mental Retardation (DMR).            Carlos and his mother. This means they did
Carlos's mother coordinated these services.        not agree or share the same expectations for
Carlos's mother also used his monthly SSI          Carlos's future. Although they shared the
check as a "bank account" to give him              vision that he would work and live indepen-
experience in using money. However, Carlos's       dently in the future, they disagreed about
mother reported that they didn't use their         what jobs he is capable of pursuing at that
own personal network as a resource: "We're it,     stage. Carlos's mother thought that Carlos was
my husband and I." One result is that,             too picky. Carlos, on the other hand, didn't
according to Carlos's mother, Carlos relied on     want to waste his time on jobs that didn't
her too much.                                      match his interests.
                                                   • Carlos feels powerless, like he was not "in
While Carlos's mother wanted Carlos to be          the driver's seat." This is the opposite of self-
independent, she feared that he would make         determination. Carlos does not see himself as
bad choices if left to his own resources. "I       being on a positive path to a fulfilling future.
don't think he is mature enough to under-
stand what the big decisions are and how he        What can Carlos & his family do?
can handle them." She didn't know how to           Carlos's mother can begin to give Carlos more
support him to make good decisions on his          responsibility in coordinating the support he
own without her making them for him. "I            receives from formal network members. In
kind of guide him.... I kind of sway him, kind     addition, while continuing to rely on their
of try to con him into it."                        formal network members, Carlos and his
                                                   family could develop their informal network.
Carlos felt the lack of support. Despite a         In this way, Carlos could gain a fuller array of
college course in computers, he didn't feel        assistance, particularly in areas in which he is is
confident that he could find a job he liked.       interested, with the addition of the personal
Carlos felt stuck. "I don't want to be alone...    knowledge and insight that family, friends,
for the rest of my life. And I don't have a good   and neighbors can give. Their support could
job that I am good at."                            help Carlos get a clearer focus on his goals,
                                                   skills, and opportunities. How can a family
Important points:                                  develop their personal network? It may not be
• Carlos demonstrates self-determination           as hard as you think!
through his strong desire to work, not settling
for the limited options offered him by his         The families who participated in this study
school program, and self-advocating at school      were probably much like your own. They had
IEP meetings.                                      varying racial/ethnic backgrounds, and the
• Carlos shows self-awareness in that he had       students ranged from freshmen to seniors in
clear interests. Having self-awareness is a        high school. The young adults had a wide

                                                                        PAGE 14               TASH
                                                        UTILIZING PERSONAL NETWORKS

Using Personal Networks to                         responsibility, encouraging you to be more          herself. Self-determined people may not
Achieve Goals as You Prepare to                    responsible for yourself.                           necessarily know exactly what they want at all
                                                   • Allowing you to make mistakes in order to         times, and their visions may change from one
Leave High School                                  learn from them.                                    day to the next, but they know how to get
 Continued from page 14
                                                   •Offering fewer suggestions to encourage            what they need.
                                                   independent decision-making.
                                                   • Letting you know that he/she thinks you         Going out and getting it: The second step to
career ideas, and explain your interests.          are capable and support the decisions you        self-determination
Network members may know about employ-             make independently.                               Once you have figured out what you want, it
ment opportunities or be helpful in exploring      • Building your ability to gradually handle       is time to develop clear goals and come up
job ideas with you.                                your own affairs.                                with an action plan. Think about where you
• Ask people in your network to introduce          • Boosting your self-confidence.                 would like to see yourself down the road.
you, or refer you, to people they know who                                                          Again, write down your plan step by step.
may be helpful to you. This can lead to new                                                          Take out
                                                   Ideas for budding independence and self-determinations your list of network members and
opportunities.                                                                                      think about how each member might be able
• Don't be afraid to ask more than once.           • Schedule an informational interview in an      to help. Put a star next to the names of those
• Realize that members in your network will        area of interest. Plan and rehearse phone calls  that you feel especially close to, and whom
play different roles and you will not get the      and interviews with someone in your              you would be comfortable asking for help.
same thing from each member.                       network.                                         Different people in your network can
• Realize that network members aren't              • Take responsibility for setting up job         probably help you in different ways. Be
always able to help. There may be times when       interviews and doing job searches. Participate   willing to ask for help and be specific.
you ask for help and they are not able to give     actively in all aspects of your job search.      Remember, you don't need to have all the
it to you. This is okay!                           • Get involved in school meetings. Bring a       answers. Self-determined people know how to
• Keep your network updated on your                list of questions and concerns to your IEP       get what they want and know how to find
progress. People like to help and it will make     meeting. Consider conducting your own IEP        help when they need it. They can define their
them feel good to know that you are working        meeting with guidance and support from           goals and take initiative in achieving them.
toward your goals.                                 your school personnel. Remember, they are
                                                   there to help!                                   Starting early
You are already exercising self-determination      • Learn responsibility through household         Although the students in these stories are
just by reaching out to those you know.            chores, cooking meals, or having a pet. Hard     recent high school graduates, you and your
Remember, a self-determined person knows           work often produces rewards!                     family should not wait until then to start
what he/she wants and can find the support         • Experiment with public transportation          building these skills. In fact, it is important to
to achieve his/her goals! It's up to you to find   when you don't have to be anywhere               build these skills early in high school. The
this support.                                      important. This is a good way to be able to      point is... it is never too early to start practicing
                                                   eventually get to a job or friend's house        self-determination and expanding your
A good network member:                             without having to rely on others.                network! So get started!
• Thinks of him/herself as a resource.             • Practice opening and managing a checking
• Is willing to listen. He/she may offer           or savings account. Having a savings account     Conclusion
suggestions or different ways to think about       is a good way to begin saving money for          Being self-determined is exciting, although
your decision or issue.                            college, a first car, or moving out on your own. making your own choices can be difficult
• Will make time in their schedule for you.        • Share in family bill-paying. This helps to     sometimes. Don't be afraid to find and ask for
• Offers encouragement, guidance, and              understand the value of groceries, clothing,     help. Reach out to your personal network and
advice when you need it.                           personal items, or rent.                         ask them to help you reach your goals. Don't
• Is a positive role model.                                                                         get discouraged if you feel like you don't know
• Should never be someone you feel                 Figuring out what you want: The first step to what you want, you change your mind, or
uncomfortable with or someone who puts             self-determination                               you've made bad choices in the past. It's okay
you down.                                          Start by figuring out what you want for          to make mistakes. Remember you are capable
• Is someone you can trust.                        yourself. These should be your dreams, not       and you can do it!
• Is someone who is happy to share his/her         someone else's dreams for you. Explore
experience with you.                               different career options. Think about what       Acknowledgements
                                                   you are good at and what makes you happy.        The authors would like to thank the families,
A good network member supports self-               Think about who you are and create a             young adults, and school personnel who
determination by:                                  personal vision statement. Write this statement participated in this project. This article also
• Asking questions but not directing or            down on paper. Remember, a self-determined       reflects the contributions of many staff
making decisions.                                  person understands his/her own strengths and members of the Institute for Community
• Allowing you to experiment with more             weaknesses, and knows a lot about him/
                                                                                                                                 Continued on page 19

                                                                      PAGE 15                TUSH CONNECTIONS, SEPTEMBER/OCTOBER 2 0 0 2
                                                    CUSTOMIZING EMPLOYMENT OPPORTUNITIES

          he Americans with                                                                                                 forge relationships, in

Ti        Disabilities Act of
          1990 (ADA)
provides a strong mandate
that describes the rights and
                                                                                                                            addition to that of rights
                                                                                                                            and responsibilities. The
                                                                                                                            employment relationship
                                                                                                                            can be unfairly negoti-
responsibilities for employ-                                                                                                ated.
ers and prospective
applicants with disabilities                                                                                                  Within the disability field
regarding the hiring process                                         BY MICHAEL                                               during the 1990s, practitio-
and the employment                                                    CALLAHAN                                                ners revisited the challenge
relationship. However, after                                                                                                  of the 1980s to work with
more than a decade of                                                                                                         applicants with significant
implementation, there                                                                                                         barriers to employment,
continue to be unmet expectations —                  for people who experience significant                 targeting those not likely to compete effec-
outright frustration, some would say — on            disabilities?                                         tively even with reasonable accommodation
both sides of this sensitive issue. Employers                                                              provided by willing employers. It was
continue to be cautious about the narrow             The answer can be found by examining the              discovered that if applicants with significant
consideration the ADA requires concerning            nature of the employment relationship                 disabilities were represented by job developers
employee performance, essential job responsi-        between employers and applicants. When                who offered a specific employment proposal
bilities and reasonable accommodation. They          framing the ADA, Congress used the concept            and, if employers were approached in an open
are not able to ask about issues relating to         of "competitive employment." Within the               manner using negotiation as opposed to legal
disability, other than the accommodations            ADA, applicants with disabilities must                entitlement, successful employment relation-
necessary to perform essential job responsibili-     compete against two apparent issues:                  ships could result (Examples: Callahan, 1990,
ties, during the interview and prior to                                                                    Mast & West, 1995).
extending a job offer. On the other hand,            a) the essential responsibilities of the job, as
many applicants with disabilities are frustrated     described by the employer, and                        We found that people with significant
by their difficulty in meeting arbitrary job         b) other applicants, those with and without           disabilities could become employed using
descriptions designed for employees without          disabilities, who might also apply for the same       tailored or personalized job descriptions and
disabilities.                                        job.                                                  that employers, by and large, were willing to
                                                                                                           embrace this concept. However, many in the
To further confuse the situation, the current        Not only must an applicant be able to                 generic employment and traditional rehabili-
thinking within the disability community             effectively perform the essential responsibili-       tation fields felt that this approach did not
does not seem to encourage applicants to             ties of a job for which he/she is applying, he/       represent "true" employment. Critics seemed
negotiate tailored job descriptions by               she must also compete successfully against            to feel that these individual strategies were a
presenting an employment proposal that               other qualified applicants.                           sort of aberration, only useful for persons with
identifies the specific skills that could match                                                            the most significant barriers to employment to
specific needs for the employer. Rather,             Many applicants with disabilities indicate            function in a quasi-employment relationship
applicants are encouraged to focus almost            they are also competing against a potential           in a grey area between "real" employment and
solely on obtaining employment from the              employer's fear of the unknown concerning             charity-based volunteer work.
perspective of legal entitlement. The bitter         issues relating to disability. While both sides
data from the decade of the post-ADA                 — employers and applicants — have voiced              Indeed, the history of TASH has been marked
1990's, a period of our country's strongest          their concerns, the structure of the ADA in its       by contentious debates regarding the nature
economic growth in history, indicates that the       current form represents a compromise with a           of employment and the strategies necessary to
number of Americans with disabilities who            slant towards civil rights instead of the nature      assist people to work, for example, the "Brown
were employed at the end of this robust              of the employment relationship.                       & Bellamy" debates of the mid-'80's. Some
decade was fewer than when the Act was                                                                     felt that it was necessary to fundamentally
signed in 1990 (Houtenville, 2000).                   This critical legislation walks a fine line          alter the employment relationship, including
                                                      providing "the art of the possible," the             payment for work performed, in order to
This confused situation seems to leave the            promise and usefulness of which will continue        assure full access for all persons who might
people who are supported by an organization           to unfold in the years to come. We are likely        want to work. Others felt that it was
such as TASH out of the employment picture            to find that the ADA is a better piece of civil      important to stay within the traditional
altogether. If people with disabilities who are       rights legislation than it is an effective tool to   boundaries set by employer expectations,
fully able to compete are finding it difficult to     directly advance employment. It is time now          typical wages and competition. It is probably
become employed, how can we expect                    to go beyond waiting on case law to decide           fair to say that these critically important
employment to become an expected outcome              specific issues. There are other ways for
                                                      employers and applicants with disabilities to                                   Continued on page 17

                                                                          PAGE 16               TASH CONNECTIONS, SEPTEMBER/OCTOBER 2002
                                                    CUSTOMIZING EMPLOYMENT OPPORTUNITIES

E m p l o y m e n t : From                           During the decade following the passage of          (Federal Register, June 26, 2002, Vol. 67. No.
                                                     the ADA, Congress passed sweeping reform of         123 pp 43154 -43149).
Competitive t o Customized
                                                     U.S. labor law in the Workforce Investment
Continued from page 16
                                                     Act of 1998. Within this legislation, people        Characteristics of Customized Employment
                                                     with disabilities are welcomed into generic         Possibly the most defining characteristic of
                                                     employment services, along with a host of           customized employment is that it is "real
debates fizzled as the tidal wave of supported
                                                     other categorical groups that were consoli-         employment" — real employment performed
employment shifted our focus from policy
                                                     dated within this sweeping Act. This generic        in typical community work settings for typical
and theory to the tough reality of keeping
                                                     system shares similar issues with employers in      wages by one person. Customized employ-
persons in jobs defined by the Rehabilitation
                                                     addressing the needs of people with disabili-       ment is different from other forms of
Act of 1986 — mostly comprised of 20 hours
                                                     ties. One solution identified by the U.S.           employment mainly in terms of the unique
of work per week at or around minimum
                                                     Department of Labor was to use the concept          manner in which the essential responsibilities
                                                     of customized employment.                           (ADA, 1990) of the job are negotiated by or
                                                                                                         on behalf of an applicant and the suggestion
However, even as the debate waned, the issue
                                                     Even though, conceptually, customized               that applicants and family members consider
of employment for persons with the most
                                                     employment represents a relevant approach           allowing job developers to disclose aspects of
significant impact of disability did not go
                                                     for both people with disabilities and the           the person's disability for purposes of
away. From the beginning of supported
                                                     general population, it is fair to say that little   negotiation. Other characteristics of custom-
employment, observers and researchers
                                                     has been written or discussed about the             ized employment include:
scolded practitioners for overlooking those
applicants with the highest support needs and        strategy on a nationwide basis until the
those with the most difficulty with competi-         summer of 2001. On July 20, 2001, the               • T h e job description of an applicant with a
tion.                                                Federal Register published a solicitation for       disability is customized through voluntary
                                                     projects to implement customized employ-            negotiation with an employer.
                                                     ment options within DOL-mandated local              •Applicants with disabilities often, though
Can the employment relationship be
                                                     workforce boards for people with disabilities       not always, use job developers to assist in the
                                                     who might need such approaches to become            negotiation of customized job descriptions.
The concern that individualized, negotiated
                                                     successfully employed. Again this year, DOL         • T h e primary focus of the customized job
employment does not reach the level of "real
                                                     has issued a solicitation containing the            description is on contribution instead of
employment" began to be put to rest early in
                                                     following definition of customized employ-          competition.
2001 when, within a week of her confirma-
                                                     ment that will be used in the proposal for          • J o b developers and applicants with
tion by Congress as the Secretary of the U.S.
                                                     federal funds:                                      disabilities present employers with a proposal
Department of Labor (DOL), Elaine Chao
suggested in a speech that, "In one sense, the                                                           to be considered by the employer in a
new economy is deconstructing work, with             "Customized employment means individual-            voluntary manner.
jobs that can't be pigeonholed into a tradi-         izing the employment relationship between           •Applicants voluntarily disclose issues
tional workday or workweek, and corporate            employees and employers in ways that meet           concerning their disabilities as a good faith
structures that, in some cases, are eliminating      the needs of both. It is based on an individu-      strategy to resolve support and accommoda-
the need for a workplace altogether. Workers         alized determination of the strengths, needs,       tion issues.
themselves are demanding more autonomy,              and interests of the person with a disability,      •Negotiation is based on a "template strategy"
more freedom, more customization of the              and is also designed to meet the specific needs     in which an applicant's potential contribu-
terms and conditions of their employment. As         of the employer.                                    tions are placed as a template over potential
we invest in critical job training, we are giving                                                        employer needs. Any matches between
workers the bargaining power they need to            It may include employment developed                 applicant contribution and employer need
custom-design their jobs around their lives--        through job carving, self-employment or             might become the component responsibilities
instead of the other way around."                    entrepreneurial initiatives, or other job           of a customized job description.
                                                     development or restructuring strategies that        •Funding for additional applicant support
                                                     result in job responsibilities being customized     needs, beyond those provided by employers
While skeptics might reasonably argue that
                                                     and individually negotiated to fit the needs of     through reasonable accommodations and
her true intent was to weaken the power of
                                                     individuals with a disability.                      supports offered to typical employees, might
labor unions to arbitrarily represent groups of
                                                                                                         be available through funding sources such as
workers, Secretary Chaos remarks, taken at
                                                     Customized employment assumes the                   vocational rehabilitation, the workforce
face value, indicate that the strategy that had
                                                     provision of reasonable accommodations and          system, social and adult services, schools and
been working for people with significant
                                                     supports necessary for the individual to            community organizations.
disabilities for over a decade has relevance for
                                                     perform the functions of a job that is              • W h i l e job responsibilities and the condi-
the broader population. In other words,
                                                     individually negotiated and developed               tions of employment that surround the job
customized employment is real employment.
                                                                                                                                    Continued on page 18

                                                                         PAGE 17                TASH CONNECTIONS, SEPTEMBER/OCTOBER 2002
                                                     CUSTOMIZING EMPLOYMENT OPPORTUNITIES

Employment: From                                      community and be appreciated for that              birth, her mother says that Marci has never
Competitive to Customized                             contribution. Some would say that Marci and        shown emotion though facial expression. Her
Continued from page 17                                people like her should simply be appreciated,      body is often in a state of movement and,
                                                      honored and included in society "for whom          occasionally, what appears to be agitation.
                                                      they are," without arbitrary or typical            Her mom says that when the external
                                                      expectations. While Marci's parents certainly      situation is pleasing and meaningful to Marci,
are negotiated, pay is determined by the
                                                      agreed with the idea of acceptance for their       she becomes still, attentive, and present. It
commensurate wage paid for the traditional
                                                      daughter, they wanted far more. They               provides the clearest way for Marci to express
job description most similar to the customized
                                                      wanted Marci to experience the daily routines,     choice and preference. Marci rarely interacts
                                                      the variety, the ebb and flow of a typical life.   in a physical manner with objects and people,
                                                      Most particularly they wanted Marci to have a      but we learned that she does have some
The implications for individuals with
                                                      job.                                               control over her right arm, which is less rigid
significant disabilities seem clear. Customized
                                                                                                         from spasticity than her left. She often moves
employment offers a strategy from which all
                                                      But who was this young woman on the cusp           that arm across the front of her body in a
people who wish to become employed can
                                                      of adulthood? In an effort to have that            gentle rocking motion from right to left.
become employed. It is our responsibility
                                                      question answered for purposes of receiving
within TASH to recommit to assuring the
                                                      adult services, her family had Marci "evalu-       The process of discovery was essential to
provision of the supports, representation,
                                                      ated" by a well-known vocational evaluator.        uncover the subtle manner in which Marci
resources and, most importantly, the values
                                                      The results were devastating. Marci was            expresses her feelings and reacts to the world
necessary to make employment a part of life
                                                      described as functioning as a seven-month-old      around her. We were able to determine the
for all.
                                                      infant. If this assessment was accurate and        environmental conditions that seemed to best
                                                      meaningful, it was obviously a stretch to          fit with Marci, as well as those situations and
Customized Employment for Marci Garvin
                                                      imagine that Marci might work for pay in the       people she seemed to prefer over others.
Marci is a woman from Ft. Worth, Texas, who           community. But her parents felt that this
experiences the most significant impact of                                                               What was missing from the equation was a
                                                      view of Marci — this comparative, competi-         way for Marci to contribute in a work place.
disability in her life. Marci represents almost       tive view — did not have any practical
perfectly an entire group of people in our            relevance. Instead, with assistance of a
society for whom the idea of a meaningful life                                                           In reviewing her school records, it was
                                                      handful of supporters who were willing to          discovered that teachers had attempted to
evokes feelings of confusion, complexity and          take a risk, they embraced the idea of
doubt. Even if society were to embrace the                                                               introduce a saucer-shaped electrical switch to
                                                      discovery.                                         Marci for purposes of turning on a tape
notion that Marci should have a life of
participation and passion, membership,                                                                   recorder for playing music. Marci seems to
relevance and the opportunity for contribu-           Discovery allowed Marci's complex life to be       enjoy the effect of music and this was thought
tion, figuring out how to assist her to               explored rather than to be compared to             to be a functional task that might lead to
accomplish this would still be difficult.             others. It provided a new way of looking at        other ways for her to control her environment.
                                                      her disability. And it set the foundation for      Hand-over-hand assistance was offered to
                                                      customization of employment. Instead of            Marci to first turn on, and then turn off, the
As a child of the "94-142" generation, she
                                                      seeing Marci's life in relation to traditional     tape player. However, that task was quickly
had access to educational services in a manner
                                                      indicators of success such as skill levels,        discontinued due to what was perceived as
that earlier members of her group never
                                                      productivity, independent performance and          resistance on Marci's part. After careful
dreamed. However, the role of school in the
                                                      the like, she could be viewed from the             consideration and analysis of this activity by a
lives of people with the most significant
                                                      perspective of what works in her life, what        dedicated support person, a flaw was
disabilities is often as unclear as the role of
                                                      moves her to be present, and what kinds of         discovered.
adult services in assisting people with such
                                                      supports might she need to make a contribu-
labels to be active participants in our culture.
                                                      tion. We found that instead of capturing           While turning on the tape player is undoubt-
The implied promise of an effective and
                                                      Marci in a two-page assessment report of           edly a functional task for those of us who love
inclusive education is that if one receives it, as
                                                      comparative performance that her complex           music, turning it off is not as functionally
a result there should be some clear benefit in
                                                      life could be described in a document the size     motivating. The proposed solution involved
relation to adult life. When Marci reached the
                                                      of a book. Of course, no one wanted to write       using a 20-second telephone answering tape
age of 21, the path ahead seemed to lead only
                                                      a book before Marci became employed, so a          with music that Marci seemed to like. She
to an adult day center or to her family's living
                                                      ten page descriptive profile was used to           would be assisted to turn the music on, and
room. To her parents thinking, this kind of
                                                      capture all the information found in discov-       after twenty seconds the tape would stop and
life seemed unfair, boring and unsatisfactory.
                                                      ery.                                               rewind automatically. The next assist would
                                                                                                         be to turn the music back on.
While Marci's parents were confused as to
                                                      Marci doesn't speak and the communication
what a meaningful life should look like, they
                                                      she uses is the most subtle imaginable. Since
felt she needed to make a contribution to her                                                                                      Continued on page 19
                                                                         PAGE 18              TASH CONNECTIONS, SEPTEMBER/OCTOBER 2002
                                                    CUSTOMIZING EMPLOYMENT OPPORTUNITIES

Employment: From                                     National Demonstration Project on Sup-
                                                                                                           Using Personal Networks to Achieve
Competitive to Customized                            ported Employment. (a national project
                                                     funded by RSA/Dept. of Ed.) Washington,
Continued from page 18                                                                                     Continued from previous column
                                                     DC: United Cerebral Palsy.

                                                     Federal Register, June 26, 2002, Vol. 67. No.        Additional Institute for Community
This single idea, derived through discovery,
                                                     123 pp 43154 -43149.                                  Inclusion resources on this topic
was the basis for Marci's job using customized
employment as a specialty stapler in the                                                                  Tools for Inclusion Series
                                                     Houtenville, A. (2000). Estimates of
personnel office at the Fort Worth Star                                                                   Stories of Success: Using networking and
                                                     employment rates for persons with disabilities
Telegram, the daily newspaper for that city.                                                              mentoring relationships in career planning
                                                     in the U.S. Ithaca, NY: RRTC for Economic
She has been working for over three years in a                                                            for students with disabilities. (February
                                                     Research on Employment Policy for Persons            2001, Vol. 9, No. 1)
job in which the hours are set to meet Marci's
                                                     with Disabilities, Cornell University.
needs. The switch that Marci turned on,
initially to hear the music she liked, operates                                                           Networking: A consumer guide to an
                                                     Mast, M. & West, M. (1995). Research and             effective job search. (January 1999, Vol. 7,
the stapler. Within a couple of months, the
                                                     Demonstration on Supported Employment                No. l)
music was no longer needed. She receives
                                                     for Individuals with Severe Physical Disabili-
commensurate pay for her work and assistance
                                                     ties. Final Report to RSA. Award                     Training Manuals
from a job trainer funded by the Medicaid
Waiver program in her state. Since starting          #H133A20026-93.                                      Building a Self-Determined Future For All
                                                                                                          Youth. (2001)
work, Marci has routinely made more per
                                                      Michael Callahan is the president of Marc Gold      This manual offers an exciting approach to
hour than her support personnel. During the
                                                      and Associates, a network of consultants, and a     teaching and learning leadership and self-
past year, shredding of personnel documents                                                               determination skills. It is divided into twelve
has been added to her responsibilities. This          member ofEmploymentfor All a non-profit
                                                                                                          curriculum units that are designed to
task utilizes a sheet feeder, which Marci             organization that focuses on access to employment
                                                                                                          introduce middle and high school students
operates with her switch, comprised of an old        for all persons with disabilities. He lives in
                                                                                                          to a broad spectrum of leadership and self-
ink-jet printer Velcro taped to the top of the        Ocean Springs, Mississippi and can be reached       determination skills. The guide is interactive
offices auto-feed shredder.                           at Micallahan@aol. com or by telephone at 228-      and contains a collection of learning
                                                      497-6999.                                           activities and materials that pertain to
Marci has been employed for six year at the
Star Telegraph. This job cracks open the door          Using Personal Networks to Achieve                 Building Community Connections:
to the possibility of Marci having a life that         Goals as You Prepare to Leave High                 Designing a Future That Works. (1996)
approximates the rhythms of those led in her           School                                             This manual serves as a curriculum for a
community. Beyond the work place, she                  Continued from page 15                             two-day workshop designed to teach
needs assistance to first identify and, later,                                                            individuals with disabilities to utilize their
participate in activities that connect her to her                                                         contacts in a job search. Topics covered
                                                       Inclusion, especially John Butterworth,            include: tapping the hidden job market,
community. In the summer of 2001, Marci
                                                       Sheila Lynch Fesko, Cynthia Zafft, and             using networks for career development and
and her family agreed to participate in a self-
determination pilot project in her county.             Rooshey Hasnain.                                   job searches, identifying and engaging
                                                                                                          individuals, keeping in touch with people
Through this project Marci has begun to
                                                       For more information, contact:                     without becoming a pest, creating a mutually
participate in community activities outside of
                                                                                                          beneficial relationship with potential
work that include receiving personal shop-                                                                employers, dealing with disclosure, and using
ping assistance from the manager of a Bath             Jaimie Ciulla Timmons
                                                                                                          service providers.
and Body Works store, picking up her                   Institute for Community Inclusion
medication at her local pharmacy and having            U Mass Boston
                                                                                                          This is a publication of the Center on State
her Ensure nutritional supplement blended              100 Morrissey Blvd.                                Systems and Employment at the Institute for
in a Starbucks Frappiccino. She also has               Boston, MA 02125                                   Community Inclusion, which is funded by the
recently gotten a debit card in her name to            (617) 287-4300                                     National Institute on Disability and Rehabilita-
make purchases as she shops in her commu-              (617) 287-4350 (TTY)                               tion Research (NIDRR) of the U.S. Department
nity.                                                                     of Education, grant #H133B980037. This
                                                                      publication urn also supported by the grant
                                                                                                          #H023D970306. The opinions contained in
References                                                                                                this publication are those of the grantees and do
                                                       Reprinted from Tools for Inclusion, Volume         not necessarily reflect those of the U.S.
Americans with Disabilities Act. (1990).
                                                       10, No. 2, August 2002.                            Department of Education.
Public Law 101-336.
                                                                           Continued in next column
Callahan, M. (1990). Final Report of the

                                                                         PAGE 19              TASH CONNECTIONS, SEPTEMBER/OCTOBER 2002
                                                             SSA WORK INCENTIVES

                                                                           SSI and Social Security     work incentives are being incorporated into
                                                                           Disability Insurance        transition planning for students with labels of
                                                                           (SSDI) benefits             severe disabilities and ongoing support needs.
                                                                           concurrently; poten-        Work incentives can be a valuable resource in
                                                                           tially all 36,000 were      transition planning for several reasons. Work
                                                                           eligible for PASS plans.    incentives are proving to be one avenue for
                                                                                                       generating financial resources which can
                                                                            While PASS plans           support career development and employment
                                                                            won't solve all the        for students while they are in school (for
                                                                            needs of unserved or       students who are eligible) and as they
                                                                            underserved people         transition to adulthood. In a PASS plan,
                                                                            within the disabilities    income or resources can be sheltered and used
                                                                            systems, they could        to support employment preparation at the
                                                                            make a significant dent    time the PASS is approved or, saved to
                                                                            in the problem. Work       purchase future employment supports,
                                                                            incentives such as PASS    services or equipment. This incentive is a
                                                                            plans have been used       viable alternate funding source to pay for
                                                                            successfully to bridge     supports necessary to obtain or maintain
                                                   the gap in services for students who are            employment for students as they graduate
                                                   exiting school and being placed on adult            from high school and perhaps placed on

P       oor post-school outcomes for students
        with disabilities has been a continual
        cause for concern for educators and
policy makers since the 1980's. A 1999
report by the Office of Inspector General for
                                                   services waiting lists, and PASS plans have
                                                   been utilized to enhance transition to
                                                   employment services for students who are still
                                                   in school (Condon, 2002). Additionally,
                                                                                                       waiting lists for adult service agencies.

                                                                                                          Social Security work incentives such as
the U.S. Department of Health and Human            money generated by a PASS plan can be
                                                                                                          PASS plans can be a valuable transition
Services linked poor transition outcomes for       leveraged to entice other agencies to come to
                                                                                                          resource for eligible students with
youth with disabilities to factors such as lack    the table and fund services to support
                                                                                                          disabilities during school and as they
of employment preparation, transition              employment for a student as a collaborative
                                                                                                          graduate.... The development of PASS
planning, and lack of services and linkages to     investment, where they may have been
                                                                                                          plans needs to be thought of as a Needed
agencies prior to high school exit. While          reluctant to serve as the sole financial support.
                                                                                                          Transition Service as schools are forming
waiting lists for adult services averaging 5                                                              interagency linkages to support the
years exist nationally (Wehman, 2001),             Although schools are required by law to assist         positive outcomes for students with
resources which could be used to enhance           families in connecting with appropriate                disabilities.
transition planning, linkages between schools      agencies and resources as a component of
and agencies, and employment outcomes such         Transition Planning, many school personnel
as Social Security work incentives, remain         have little information or experience with          Work incentives such as PASS plans can be a
underutilized.                                     Social Security benefits or work incentives.        source of consumer controlled funds and
                                                   Comprehensive surveys of school personnel,          promote choice and control for families and
The Social Security Work Incentive Program,        school administrators, adult service adminis-       students who are eligible and utilize them.
which allows Supplemental Security Income          trators, and adult service providers in             PASS plans are flexible in what they fund, as
(SSI) recipients to set aside income and           Montana consistently identified that service        long as it supports employment and is written
resources to fund vocational services and          personnel felt it was their responsibility to       into a plan which is approved by Social
supports, has been in place since 1974.            refer students and families to SSA, but seldom      Security. PASS plans have been utilized to
However, the number of individuals accessing       indicated that they had any involvement,            purchase vehicles, job development services,
this program nationally is minimal. According      responsibility, or experience in the actual         Vocational Evaluations (or community based
to the March 2002, quarterly report from           development of an application for SSA               alternatives such as the Vocational Profile),
Social Security, "SSI Disabled Recipients who      benefits or work incentives (Vogelsberg,            transportation, equipment needed to start a
                                                   McGregor, Buck, & Vanek, 2002). Virginia            small business and many other items or
Work," 1,649 PASS (Plan for Achieving
                                                   Commonwealth University estimated that              services needed to assist someone become
Support) plans are currently active in the
                                                   only 15% of parents learn of the SSI program        employed, advance employment or in the case
United States, but only 1 PASS plan is in
                                                   through school personnel (cited by Johnson,         of someone who utilizes supported employ-
active status for an individual under the age of
                                                   D. 2002).                                           ment services, maintain employment. The
18. Ninety-seven (97) PASS plans are active
                                                                                                       restrictions regarding who one can contract
for young adults ages 18-21 years old.
According to the Social Security Administra-       In two Model Transition Demonstration
tion (SSA) in 1999, thirty-six thousand            projects in Montana, funded by the U.S.
(36,000) people aged 18-24 were receiving          Department of Education, Social Security                                      Continued on page 21
                                                                       PAGE 20              TASH CONNECTIONS, SEPTEMBER/OCTOBER 2 0 0 2
                                                             SSA WORK INCENTIVES

Transition and Employment                         them to appropriate agencies that could fund
                                                  and provide these services prior to graduation.     To be eligible for a PASS, an individual must
Services through the Utiliza-                     PASS plans were written, submitted to the           have income or resources which decrease their
tion of SSA Work Incentives                       PASS Cadre, and approved in advance of the          SSI benefits. While it is unlikely for students
 Continued from page 20                           student graduating, contingent upon their           to have high enough earnings to decrease their
                                                  earnings upon graduation.                           SSI, due to the SEIE (Student Earned Income
                                                                                                     Exclusion) amounts, they may have unearned
                                                  Student PASS Example #1:                           income which reduces their monthly SSI
with to provide sen/ices are fewer using a                                                           which, in turn, would make them eligible for
PASS plan than if one were using state or                                                            PASS plans while they are still in school.
                                                  When Matt turned 18, his family assisted him
federal disability funds, which again increases                                                      Sources of unearned income which were
                                                  to apply for SSI. He was determined eligible
consumer choice and control. Work incen-                                                             utilized for Montana students included:
                                                  to receive the full benefit rate of $545.00/
tives such as PASS can be used to bridge the                                                         Adoption Subsidies, Survivor's Benefits, and
                                                  month. Although Matt was working part time
gap between youth and adult life while                                                               Social Security Disability Insurance, (SSDI)
                                                  while he was still in school, his earnings were
allowing students and families to choose what                                                        through a retired or disabled parent's SSA
                                                  not above $5340/year (2002 Student Earned
they need for supports, services or equipment                                                        account. In these cases, PASS plans began for
                                                  Income Exclusion amount). Since his wages
and whom they would like to provide these         were not reducing his SSI check he would not       students as young as age 14. PASS funds
services.                                         be eligible for a PASS until he graduated and      were set aside for future support needs or
                                                  began earning over $85/month (the earned           utilized to purchase services, supports, or
Are students really eligible for PASS Plans?      income exclusion rate). For every $2 exceed-       items necessary to achieve a current Vocational
                                                  ing the first $85/month gross earnings, Matt's     Goal.
In January of 2002, the amount of wages           SSI check would have been reduced by $ 1 if
students were allowed to earn before              he did not have a PASS plan in place.              Student Pass Example #2:
impacting their SSI checks was increased to
$ 1320/month or a total of $5340/ year. This
                                                  From Matt's high school work experiences, his      Ann was a 16 year old sophomore in high
incentive is referred to as the Student Earned
                                                  team knew that he would need intermittent          school, and she had been receiving only SSI
Income Exclusion. It is unlikely that students
                                                  ongoing support to enable him to remain            and at the full benefit rate ($545/month in
receiving SSI benefits only will become
                                                  employed. Matt had been referred to                2002). However, upon the death of her
eligible for PASS plans due to their own
                                                  Developmental Disabilities Services for            father, Ann began receiving survivor's benefits
earnings while still considered a student.
                                                  employment supports and found to be                of $310/month which reduced her SSI check
However, as soon as they graduate from
                                                  eligible, but like many young graduates, he        from $545/month to $235/month thereby
school, their wages, after the first $85/month
                                                  was put on a waiting list for these services. As   making her eligible for a PASS.
(if they only receive SSI), will begin reducing
                                                  part of his transition planning, Platte High
their monthly SSI check, thereby making
                                                  School set the goal to place Matt in a paid job    Her IEP team chose to write a PASS plan
them eligible for a PASS.
                                                  prior to exiting high school. If Matt was          which would "shelter" her unearned income.
                                                  working 20 hours per week after graduation,        Her monthly SSI check would then remain at
The goal for schools participating in the         he would be eligible for approximately $200/       the 2002 Federal Benefit Rate (FBR),
Montana transition demonstration grants is to     month in a PASS. (The amount his SSI check         $545.00 month. She would then use the
graduate students with severe disabilities into   would be decreased due to his wages.) The          sheltered $290 month to support the pursuit
paid jobs of at least 20 hours per week,          need for a PASS plan was included as a             of her vocational goal.
customized for them through an individual-        transition service need on his Individual
ized Discovery and Vocational Profile process.    Education Plan (IEP).                              Ann's team began with the assumption that
                                                                                                     she could work in the community if she had a
In one Montana school the three graduates
                                                  Based upon Matt's aptitude and interest in         position customized to meet her support
involved in the projects were working upon
                                                  numbers, computers and his abilities to find       needs where she could make a contribution.
graduation but were placed on waiting lists
                                                  mistakes, his PASS plan was written with the       They had been spending time gathering
for employment services from the state
                                                  work goal: to obtain a position within the desk    information about who Ann was, what her
Developmental Disabilities agency. All three
                                                  top publishing field. The plan enabled Matt        preferences and interests were in regards to
students require some form of ongoing
                                                  to hire his family to help him get to and from     employment, what her support needs were,
supports to maintain employment. PASS
                                                  work and hire a person he chose to provide         what job tasks she could perform and what
plans were written for each student sheltering
                                                  the critical follow-along support for his job      her particular contributions might be to an
their wages or unearned income to pay for
                                                  and receive computer tutoring to enable him        employer. They had learned that Ann had an
their needed supports. It was essential for
                                                  to acquire skills to advance his employment.       exceptional memory for schedules and details
each student's Individual Education Plan
                                                  His plan was written for the period of two         and she very readily offered solutions to
(IEP) team to organize these supports in the
student's Needed Transition Services and link                                                                                  Continued on page 22

                                                                     PAGE 21                TASH CONNECTIONS, SEPTEMBER/OCTOBER 2 0 0 2
                                                          SSA WORK INCENTIVES

Transition and Employment
Services through the Utiliza-
tion of SSA Work Incentives                                                                        Forward Thinking
Continued from page 21                                                                               An educational consulting company

difficulties in juggling transportation or
staffing schedules in the classroom. The team
identified her vocational goal to obtain a
position as a logistics coordinator.

The team chose to write the Plan ending 2
months post graduation with the assumption
that they would amend the plan if the goal
had changed or what she needed to purchase
changed or write an extension if all remained
the same. The Plan paid for Job Develop-
ment, Job coaching and transportation which
allowed Ann to augment services provided by
the school. Upon graduation the PASS was
amended to include sheltering her wages in          The author, Ellen Condon, is Transition          Is your school effective for
addition to unearned income for a total of          Projects Director at the University of            students with disabilities?
$497/month. The PASS allowed Ann to                 Montana Rural Institute on Disabilities.
purchase a wheelchair accessible van, pay for a     Activities of the Transition department        Do you have qualified people to
driver and for follow-along services to support     are supported by grant                                  guide you?
her on her job, and set aside monies for future     #H324M000089 and grant
job coaching or development if needed.              #H324M020l40 from the Office of
                                                    Special Education at the U.S. Depart-            Contact    Forward     Thinking
Summary                                             ment of Education and the state of
                                                                                                                to begin.
                                                    Montana Developmental Disabilities
Social Security Work Incentives such as PASS        Planning and Advisory Council Ms.
plans can be a valuable transition resource for     Condon can be reached at (406) 243-
eligible students with disabilities during          4134 or by e-mail at
school and as they graduate. Strategies to          condon@selway
increase the utilization of PASS plans need to
be incorporated into transition planning for
students. The development of PASS plans
needs to be thought of as a Needed Transition
Service as schools are forming interagency        Emplovment
                                                  Employment Strand
linkages to support the positive outcomes for     and Sessions
students with disabilities.                       Continued from page 10

                                                  Utilizing the Discrepancy Analysis Tool to
                                                  Guarantee the "Perfect" Job Match
Condon, E, (2002). Nurturing the Seeds            Speaker: Jennifer Joyce
monograph. Missoula, MT: University of
Montana Rural Institute on Disabilities.          Job matching is necessary for successful
                                                  employment and leads to the satisfaction of
Johnson, D. (2002). "The Importance of SSI        employees, employers, and funding sources.
Work Incentives for Transition-Aged Youth         This workshop describes the process used to
                                                  determine potential discrepancies and their
with Disabilities, Impact, (15), 1, Minneapo-
                                                  interventions in order to facilitate the
lis, MN: The University of Minnesota.
                                                  "perfect" job match.

                                                                    PAGE 22               TASH CONNECTIONS, SEPTEMBER/OCTOBER 2002
             hen it comes to employ-                                                                           tional skills training; skills upgrading;
             ment-related services,                                                                            and customized training for employers.
             within the disability                                                                             Training services are provided through
community much attention is paid to                                                                            Individual Training Accounts which
public vocational rehabilitation and                                                                           allow an individual to choose to receive
those services provided and funded by                                                                          training from any approved training
developmental disability and mental                                                                            provider. While core services are
health agencies. However, over the last                                                                        available to anyone, you must meet
several years, the public employment                                                                           eligibility requirements for intensive
and training services that are designed                                                                        and training services.
to serve anyone needing assistance in
finding a job have undergone extensive                                                                          The set-up of the One-Stop system
changes, opening a variety of opportu-                                                                          varies from state-to-state and even
nities for people with disabilities.                                                                            within states. The locally driven nature
                                                                                                                of the system accounts in part for the
In 1998, Congress passed the                                                                                    differences between One-Stops that
Workforce Investment Act (WIA),                                                                                 are often observed within a state. Local
which replaced the Job Training                                                                                 Workforce Investment Boards [LWIBs]
Partnership Act. One of the key                                                                                 appoint the One-Stop operator. Each
principles of WIA is universal access.                                                                          LWIB is its own incorporated body,
What this means is that anyone,                                                                                 and the One-Stop system is set up
                                                     disability partner is the public vocational        based on the preferences of the LWIB. While
including people with disabilities, can receive
                                                     rehabilitation (VR) system (which also             a few less populous states have only one
a basic level of services from the workforce
                                                     includes public agencies for the blind and         LWIB, most states have multiple LWIBs.
development system. Under WIA, services are
                                                     visually impaired). As a result, some level of
accessed via One-Stop Career Centers, which
                                                     VR services should be available via the One-
operate through a network of centers in each                                                            Many One-Stops are free-standing facilities.
                                                     Stop system. In some cases, the entire local VR
state. Each state is required to have at least one                                                      Others are located within existing public
                                                     office is located at the One-Stop Center, while
comprehensive center in each major popula-                                                              settings, such as community colleges, or
                                                     in others, individual VR staff are based at the
tion area.                                                                                              government complexes. Some One-Stops use
                                                     One-Stop on a full-time or part-time basis.
                                                                                                        a mall-like concept, with a wide range of
                                                     One-Stops can go beyond the federally
One-Stop System Overview                                                                                programs and services on-site. Others have
                                                     mandated partners and form a variety of
One-Stops are sometimes referred to as an                                                               only the core services available on-site, and act
                                                     relationships and partnerships with non-
agency. This is really a misnomer, since a One-                                                         as a referral point for other services based
                                                     mandated public and private agencies, and
Stop is not a single agency, but rather multiple                                                        elsewhere. Full service One-Stops have a
                                                     many examples of this exist throughout the
agencies and partners that have come together                                                           resource library which typically has a bank of
to form the One-Stop system. The intent of                                                              computers for developing resumes, cover
the One-Stop system under WIA is to provide                                                             letters, and conducting job searches over the
                                                     The services available via the One-Stop system     internet. The resource library also usually
seamless access to multiple programs and
                                                     are broken into three categories: core,            contains publications and information on
services in one location, making it easier for
                                                     intensive, and training. Core services provide     looking for a job, and papers copies of job
job seekers and employers to use these services.
                                                     basic assistance in finding employment. These      listings from local employers. Most full service
                                                     services tend to be fairly self-directed, or are   One-Stops also offer basic workshops (at no
A number of federally funded programs are
                                                     done in group settings. Intensive services,        charge) on job seeking, interviewing skills, and
mandated to be partners in the One-Stop
                                                     which typically provide more one-to-one            related topics. In addition, many One-Stops
system under WIA. The only mandated
                                                     assistance than core, are intended for indi-       have support groups for job seekers. One-
                                                     viduals who have not become successfully           Stops may have many other core services
   The ability to access some services               employed as a result of core services. Intensive   available as well.
   without undergoing an eligibility                 services are provided either at the One-Stop or
   process, and to receive services in an            off-site, possibly through a contract with a
                                                     service provider. Training services are intended   In addition to full-service centers, many states
   integrated setting, side-by-side with the
                                                     for eligible individuals who have not become       (particularly rural ones) also have satellite
   general public, are a realization of the
                                                     successfully employed as a result of core and      centers, with more limited services. Satellite
   types of opportunities for which TASH
   and similar organizations have long               intensive services, and are provided off-site.     centers may be free-standing facilities, but also
   advocated                                         Types of training services include occupa-
                                                                                                                                    Continued on page 24

                                                                        PAGE 23                TASH CONNECTIONS, SEPTEMBER/OCTOBER 2 0 0 2
                                                         WORKFORCE INVESTMENT ACT

Workforce Investment Act and                       realization of the types of opportunities for      accessible to a wide range of people with
                                                   which TASH and similar organizations have          disabilities.
One-Stop Career Centers
                                                   long advocated.                                    • Public Vocational Rehabilitation is
Continued from page 23
                                                                                                      increasingly recognizing the mutual benefits
                                                   Over the last few years, through a variety of      that can result from participating as a partner
                                                   initiatives, the Institute for Community           in the One-Stop system. For instance, VR
may be based in other public settings such as      Inclusion has had the opportunity to gather        clients are often participating in various
public libraries. In addition, many states offer   information and conduct site visits with One-      workshops offered to all One-Stop customers,
some services via the internet, and the US         Stop systems throughout the United States.         rather then VR spending its resources on its
Department of Labor also has a variety of          Based on this work, and the information            own groups of people in search of employ-
internet tools at:           gathering of other entities, it is clear that in   ment. Also, many examples exist of VR co-
                                                   many areas of the country, One-Stop Career         funding services for a consumer with other
One-Stop Career Centers go by a variety of         Centers are operating which are truly are a        partners. For example, VR may pay for
names depending on the state. The term             major contrast to the previous employment          assessment services, with WIA funds used for
"One-Stop" may not even be part of the             and training services, providing customer-         provision of training.
name. Some states use the same name for all        friendly assistance and access to a wide range     • Beyond public VR, the One-Stop system is
centers throughout the state (for example in       of services to meet individual's employment        building a variety of partnerships with other
New Hampshire, all centers are called "New         and training needs. Many One-Stops have            disability entities. In some areas, Public
Hampshire Works"), while in other states           devoted significant time, energy and resources     Mental Health agencies are increasing their
(such as Massachusetts), the name is different     into building up their capacity to serve people    level of interest and involvement in the One-
in each local area.                                with disabilities, and are able to respond         Stop system with referral mechanisms and
                                                   effectively in meeting a variety of customer       collaborative service delivery. With a few
The Opportunities and Realities of the One-        needs.                                             exceptions, public Developmental Disability
Stop System                                        • It is clear that the key to properly serving     and Mental Retardation (DD/MR) agencies
Given the variety of other service options that    customers with disabilities is an overall focus    have had limited involvement in the One-
already exist, many people with disabilities       on quality services for all customers. It has      Stop system. However, through various
may wonder why they should even bother             been observed that a general emphasis by the       demonstration projections interaction is
investigating services from the One-Stop           center management on making every                  increasing, and some Development Disability
system. There are several reasons:                 customer feel welcome goes a long way              Councils are beginning to dedicate resources
                                                   towards ensuring that people with disabilities     to enhancing the ability of One-Stops to meet
•One-Stops can expand the array of service         receive the respect and treatment to which         the needs of their clients.
options available. Via the One-Stop system, a      they are entitled.                                 ••• Community Rehabilitation Providers
person with a disability may become aware of       •J» The initial interaction and intake process     (CRPs) have developed a broad range of
services and opportunities that they did not       that occurs when an individual first enters a      relationships with One-Stop Career Centers.
know previously existed. In particular, there      One-Stop is crucial. Those One-Stops that          Examples include: assisting consumers they
may be many "non-disability specific" services     have thoroughly analyzed this process to           are working with to use the services of the
available, which an individual may have            ensure that customer needs are quickly             One-Stop system as a supplement to the other
previously been unaware of.                        identified and responded to, and have              services the CRP is providing; job developers
••• One-Stops provide the opportunity to           properly trained staff at the front desk to        using the resources of the One-Stop to
receive services in a more efficient fashion.      handle a variety of customer needs, are better     identify potential employment opportunities;
With access to an array of services available at   able to meet the needs of people with              CRPs using the One-Stop as a satellite office
one location, like other One-Stop customers,       disabilities.                                      with a desk at the One-Stop; co-teaching of
people with disabilities can avoid going from                                                         workshops with One-Stop staff; and serving
                                                   ••• One-Stops are implementing a variety of
place to place, having to provide the same                                                            as a vendor for intensive and training services.
                                                   universal design and learning strategies to
information over and over, or needing to make                                                         ••• Full- and part-time benefit planners
                                                   ensure that the services they offer cover a wide
numerous phone calls to get the services they                                                         funded by the Social Security Administration
                                                   range of communication needs and styles,
need.                                                                                                 work out of many One-Stop Centers.
                                                   which allows the One-Stop to meet a greater
••• One-Stops do not have to be an "either/or"     range of customer needs, and reduces the           • Many One-Stops and LWIBs have
option. Many people with disabilities are          need for accommodations for specific               developed disability committees and advisory
using the services of the One-Stop system in       customers and the need to disclose non-            groups to promote ongoing dialogue regard-
addition to other services they are already        apparent disabilities.                             ing a range of disability issues and to under-
receiving.                                         • Many One-Stops have dedicated signifi-           take various initiatives.
••• The ability to access some services without    cant resources to obtaining a wide range of        • Many workforce boards have significantly
undergoing an eligibility process, and to          assistive technology to ensure that computer       addressed the needs of people with disabilities
receive services in an integrated setting, side-   work stations and other One-Stop services are
by-side with the general public, are a                                                                                            Continued on page 25
                                                                       PAGE 24              TASH CONNECTIONS, SEPTEMBER/OCTOBER 2 0 0 2
                                                            WORKFORCE INVESTMENT ACT

Workforce Investment Act and                          have the ability to serve. It was particularly      •Another alternative is to contact the Local
                                                      gratifying to the author to be at a recent          Workforce Investment Board, which appoints
One-Stop Career Centers
                                                      meeting with a One-Stop operator who stated         the One-Stop operator, and has oversight
Continued from page 24
                                                      that people with disabilities were under-           responsibility. LWIBs are required to regularly
                                                      utilizing the services of the local One-Stop        have public meetings, which may provide a
                                                      system, and that she wanted to take steps to        forum for input.
in their planning documents and strategic             address this issue. Her interest had nothing to     • In advocating with One-Stops and LWIBs,
planning processes.                                   do with any additional funding opportuni-           do more than just complain - educate! It is
• There is significant interest in the new            ties, but simply because meeting the needs of       rare that the needs of people with disabilities
Ticket to Work program from Social Security.          people with disabilities was seen as an             are not being met because of intentional
A few One-Stop Career Centers and                     important part of their fundamental mission         discrimination. Instead, it is often simply lack
Workforce Boards have already become service          as a One-Stop operator.                             of education and awareness regarding
providers under the Ticket program, and these                                                             disability issues. Offer to assist the One-Stop
numbers are expected to expand significantly.                                                             and LWIB to better serve people with
                                                      Ongoing Challenges
Developing the capacity to be a provider                                                                  disabilities. Put them in contact with local
                                                      Such practices and developments clearly
under the Ticket to Work, will certainly                                                                  resources, and the range of technical assistance
                                                      demonstrate that the One-Stop system does
enhance the overall ability of One-Stops to                                                               entities receiving funding to assist One-Stops
                                                      indeed have the interest and ability to serve
serve people with disabilities.                                                                           and LWIBs with disability issues.
                                                      individuals with disabilities in an effective
• T h e WIA Non-Discrimination and Equal              manner. However, these observations are             • If your state or local area is receiving
Opportunity Regulations contain strong                certainly not consistent across the country, or     funding from USDOL to enhance the
protections for people with disabilities. The         even within different areas of individual           capacity to serve people with disabilities, you
U.S. Department of Labor is expected to               states.                                             may wish to contact the individual's involved
expand its monitoring of enforcement of these                                                             with these initiatives to determine if there are
regulations over the coming months.                                                                       ideas and resources available to improve the
                                                      While the One-Stop system has made
•> One of the major frustrations for people                                                               One-Stop's ability to serve people with
                                                      significant progress in meeting the needs of
with disabilities and their families is the ability                                                       disabilities.
                                                      people with disabilities, there is still much to
to easily access information regarding services
                                                      be done. Some One-Stops continue to                 • In cases where, despite your advocacy
for which they may be eligible. There is
                                                      demonstrate a limited capacity to respond to        efforts, the One-Stop and/or LWIB is
increasing recognition that One-Stops provide
                                                      the needs of people with disabilities, which        continuing to not properly meet the needs of
a framework for addressing this issue. The
                                                      seems usually to translate into a limited ability   people with disabilities, you can contact the
ideal One-Stop would be one that goes well
                                                      to respond to the needs of other customer           U.S. Department of Labor's Civil Rights
beyond the mandates of WIA, and provides
                                                      groups as well. There are still way too many        Center (CRC), which is responsible for
information on the full range of services that
                                                      cases of people with disabilities being denied      ensuring that workforce development services
an individual may be eligible for from the
                                                      services that are universally accessible to all,    under WIA do not discriminate. Contact
array of disability agencies (such as VR,
                                                      not being provided proper accommodations,           information for the CRC is listed in the
Mental Health, DD/MR) and also non-
                                                      or being automatically referred to public VR        resource section at the end of this article.
disability agencies. This would include the
                                                      (which is not permitted under WIA). It can          It is important to bear in mind that given
ability to obtain assistance regarding Social
                                                      be particularly frustrating, given all the          their mandate to be universally accessible,
Security benefits, public health benefits
                                                      attention that is being paid to this issue, if      One-Stops cannot be all things to all people,
(Medicare/Medicaid) and other supports
                                                      your local One-Stop is still not recognizing        and there may be cases where due to limita-
(such as transportation and housing) all in one
                                                      and responding effectively to the needs of          tions on resources, One-Stops are unable to
location. Although no One-Stop system has
                                                      people with disabilities. Here are some             meet all of an individual's employment and
been observed that is fulfilling its complete
                                                      suggestions for people with disabilities, in        training needs. No matter what though, you
potential in this regard, there is increasing
                                                      dealing with concerns with their One-Stop           are entitled to be treated with dignity and
movement by some local One-Stops, to
                                                      system:                                             respect, to have access to the core services, to
expand their role as an information and
referral point for the all the workforce                                                                  be provided reasonable accommodations if
development activity in the community,                • In cases where you feel you were not              needed, and to receive equal consideration for
including those services targeted towards             treated properly at a One-Stop Career Center,       intensive and training services.
people with disabilities.                             or just feel that the needs of people with
                                                      disabilities could be better met, you should        Conclusion
• In general, the interest of One-Stop Career         feel free to ask to meet with the manager, or       If you have yet to go there, visit your local
Centers and workforce boards in disability            Equal Opportunity Officer. Every One-Stop           One-Stop Career Center and see what it's all
issues has grown significantly over the past          is supposed to have an Equal Opportunity            about. If there's room for improvement, don't
few years. There is an increasing recognition         Officer, and contact information for this           be silent - advocate! WIA and One-Stops
that people with disabilities are a major             individual is supposed to be prominently
population subgroup, which One-Stops must             displayed.                                                                     Continued on page 26

                                                                         PAGE 25                 TASH CONNECTIONS, SEPTEMBER/OCTOBER 2 0 0 2
                                                       WORKFORCE INVES1MENT ACT

Workforce Investment Act and                           PROMISING DEVELOPMENTS IN THE ONE-
One-Stop Career Centers
Continued from page 25                                            STOP SYSTEM
                                                    Department of Labor Disability                 funded two national technical assistance
                                                    Dollars                                        centers on workforce development and
provide a wonderful venue to prove that
integrated service delivery does indeed work,
to the benefit of individuals with disabilities
                                                    M      any of the promising practices
                                                           and developments that have
                                                    occurred within the One-Stop system
                                                                                                   disability. One of the centers is focused
                                                                                                   on issues for adults, while the other is
                                                                                                   focused on issues for youth (contact
and society as a whole. It's important to not let
                                                    are in part a result of the extensive          information for each of these centers
this opportunity slip by.
                                                    funding the U.S. Department of Labor is        can be found in the Resource listing on
                                                    dedicating to building the capacity of         this page). The bottom line is that
                                                    the One-Stop system to meet the needs          literally millions and millions of dollars
For additional information, including details
                                                    of people with disabilities. States that       are being spent to ensure that the One-
on One-Stop disability initiatives in your
                                                    have received funding for such purposes        Stop system can properly serve people
state, please contact the National Center on        through various Department of Labor            with disabilities. The end result should
Workforce and Disability/Adult at: 1-888-           (DOL) grant initiatives include:               be increasingly greater consistency
886-9898 (toll free) or by e-mail:                  Alabama, Alaska, California, Colorado,         across the country in the ability of the; website:                     Connecticut, Florida, Hawaii, Illinois,        One-Stop system to the meet the needs                                   Iowa, Indiana, Kansas, Kentucky,               of the disability community.
                                                    Louisiana, Maine, Maryland, Massa-
For information on workforce development            chusetts, Michigan, Minnesota, Mis-
services for transition contact the National                                                       Opportunities for Young People
                                                    souri, Montana, New Hampshire, New
Collaborative on Workforce and Disabilities/                                                       Under WI A
                                                    Mexico, New York, North Carolina,
Youth at: 1-877-871-0744 (toll free); e-mail:                                                      The main focus of this article is on One-
                                                    Ohio, Oklahoma, Oregon, Pennsylva-; website: www.ncwd-                                                          Stop Career Centers, which are mainly
                                                    nia, Rhode Island, South Dakota,                                                                                         targeted towards adults. However, One-
                                                    Tennessee, Texas, Vermont, Virginia,
                                                                                                   Stop Career Centers can also be a
                                                    Washington, West Virginia, and
To find the location of your local One-Stop                                                        significant resource for young people
Career Center, contact America's Service                                                           with disabilities transitioning from
Locator at:, or by                                                          school-to-adult life.
calling: 1-877-US-2JOBS                             Some of these initiatives have funded
                                                    statewide efforts while others are             For example, in Massachusetts, One-
                                                    focused on a specific local area within a      Stop Career Centers have successfully
Contact information for most workforce
                                                    state. In addition to these efforts, each of   assisted a number of transitioning
boards can be found at the National Associa-
                                                    the 10 federally funded regional               students to obtain employment. There
tion of Workforce Boards website:
                                                    Disability Business Technical Assis-           are also additional options for young
                                                    tance Centers has received funds to            people under WIA, beyond One-Stops.
                                                    work with One-Stop Centers in their            Local Workforce Investment Boards
US Department of Labor, Civil Rights Center
                                                    region.                                        oversee funding for a variety of youth
- voice: 202-693-6502; e-mail:; web site:                                                               services, which are designed to assist
                                                    It is important for disability advocates       young people in obtaining vocational
                                                    to be aware of the activities that are         experience. Individuals with disabilities
                                                    taking place within their state to             are eligible for these youth services. In
                                                    determine if there are opportunities to        addition, the U.S. Department of Labor
                                                    become involved and participate in             has been awarding funds for a variety of
                                                    these efforts, to ensure that such efforts     demonstration projects focused on
   David Hoff is the Project Coordinator for        are truly building the capacity of the         youth with disabilities. For additional
   the National Center on Workforce and             One-Stop system to meet the needs of           information, contact the National
   Disability for Adults, at the Institute for      customers with disabilities, and to learn      Collaborative on Workforce and
   Community Inclusion, U Mass Boston;              about promising practices that are             Disabilities for Youth (contact informa-
   Voice 617-287-4345; TTY: 617-287-                occurring for possible replication.            tion in the Resource section on this
   4350; e-mail-
                                                    In addition to these various state and
                                                    regional efforts, the U.S. DOL has

                                                                    PAGE 26             TASH CONNECTIONS, SEPTEMBER/OCTOBER 2 0 0 2
                                           EMPLOYMENT DEVELOPMENT IN RURAL COMMUNITIES

                                                                development process gains the         and visibly create business and personal
                                                                respect of employers.                 relationships;

                                                                One promising technique for              Businesses are particularly concerned about
                                                                growing jobs involves nurturing       the future of students leaving public schools,
                                                                community relationships and           and many local Chambers of Commerce,
                                                                networks by establishing Active       service clubs, and city/county governments
                                                                Employment Councils (AECs)            have committees studying school improve-
                                                                or Business Leadership Networks       ment that welcome contributing committee
                                                                (BLNs). These councils meet           members and can assist with job development
                                                                monthly and members are               efforts;
                                                                required to bring at least one
                                                                employment lead or "contact."            Be careful not to overlook the public sector
                                                                                                      as an employment option. There are govern-

E       mployment development for transition
        age youth and adults with significant
        disabilities is often constrained by
reactions to the alleged "job market." Even
today, many job developers and employment
                                                  One or two consumers are asked if they have
                                                  an interest in exploring employment in the
                                                  "contacts" business. This contact is then called
                                                  and given the name of the council member
                                                                                                      ment jobs in large cities and in the smallest of
                                                                                                      communities. Washington State, which has a
                                                                                                      large rural population, recently announced a
                                                                                                      state government initiative to hire people with
                                                  who suggested calling, and an appointment to        severe disabilities in public sector jobs utilizing
and transition specialists are taught to review
                                                  discuss employment opportunities is made.           supported employment techniques.
the labor market and test people with
                                                  Sometimes contacts are suppliers to the
disabilities to see if they "fit" within the
                                                  council member's business, and a natural            Employers understand their workforce and
current economic environment. In areas of
                                                  business relationship already exists that can be    production needs much better than those of
high commercial activity, this approach may
                                                  leveraged into job development. Often, too,         us who do not work in those businesses.
work well enough to reinforce its premise, but
                                                  the council members find that they have jobs        Employers can assist in job restructuring and
in typical markets (and especially in depressed
                                                  available in their own companies and can help       on-site training efficiently and more naturally
markets) this just labels individuals with
                                                  minimize the red tape and other roadblocks          than outside human service or school
significant disabilities as "unemployable." In
                                                  inherent in job hunting. Because business and       personnel who typically must learn jobs first,
rural areas (and urban, too), people get jobs
                                                  consumers participate in the council, employ-       then teach the new worker. In numerous
through various networks of association, and
                                                  ment outcomes are the absolute priority for all     cases, co-workers effectively instructed new
by being competitive in the workplace.
                                                  council activity, mutually beneficial and           workers with disabilities in task performance,
                                                  respectful relationships form that create a force   while employment specialists offered instruc-
Employer and Consumer Control of the Job          for job development in the community.               tional support and effective teaching/
Discovery Process
                                                                                                      supervision strategies.
The power of networks for the job seeker
                                                  When prospecting for Council members,
cannot be overstated. Without "respected
                                                  begin incubating the group with a core team         Staff at the Rural Institute at the University of
other's" representation, the job seeker is just
                                                  of strongly committed employers. School             Montana develop and create jobs in rather
another name on an application. In inter-
                                                  personnel might logically approach the              remote sections of the country. Often, no
views, job seekers may be just another
                                                  business people on the School Board and             formal jobs exist. The strategy is to look for
applicant, except that they also have a
                                                  enlist their participation.                         products or services that are needed and either
disability. Transition/employment specialists
                                                                                                      create a consumer-run enterprise or help
and job seekers alike must create networks that
                                                  Critical lessons are being learned through such     established business expand through the use
include people who influence those who hire.
                                                  councils that seem to have universal applica-       of formal partnership agreements.
                                                  bility to all communities. These include:
Typically, people use references such as their
                                                                                                      Recent business start-ups include a small
former bosses or professors, but many people
                                                    'In order to create employment and act as a       engine repair business, run as a sole propri-
labeled with severe disabilities have no one of
                                                  representative for people with disabilities, the    etorship but located within another "fix-it
community standing representing them. If
                                                  transition/employment specialist should be          shop" in Plains, Montana; a stuffed animal
transition/employment specialists take action
                                                  well known to the business community, and           concession at a Nature Center in Red Lodge,
to become known as credible and giving
                                                  should have people with disabilities actively       Montana, (where the Nature Center receives
members of their communities, the job
                                                                                                                                  Continued on page 28

                                                                     PAGE 27                TASK CONNECTIONS, SEPTEMBER/OCTOBER 2 0 0 2
                                                EMPLOYMENT DEVELOPMENT IN RURAL COMMUNITIES

GROWING JOBS IN                                       employment who, for a variety of reasons            ment, paper shredding, etc. Hours: Monday -
                                                      (including physical disability, cyclical            Friday, 15 hours per week.
                                                      psychiatric illness, medical fragility, available
COMMUNITIES                                           supports, and choice) may not be in the             Taxidermist Assistant: Duties include salting
Continued from page 27
                                                      market for full-time employment. Care must          hides, preparation work. Monday - Friday, 20
                                                      be taken not to create jobs that devalue            hours per week.
                                                      workers with disabilities by physically
 10% on all sales in exchange for housing the         separating them from other workers or by            Seamstress: Duties include guiding material
business run by a young entrepreneur with             having them perform tasks that are consid-          through computerized sewing machine,
serious disabilities), et al. The possibilities are   ered bothersome, dangerous, or unpleasant.          quality control, packaging, etc. Monday-
limitless. Active Employment Councils help                                                                Friday, 40 hours per week.
identify local entrepreneurs and companies            Job carving entails analyzing work duties of
willing to develop partnerships and businesses        specific jobs and identifying specific tasks        Car Wash Attendant: Duties include cleaning
within businesses, and individual members             that could be assigned to employees with            wash bays, refilling soap and liquid wax
bring priceless expertise and advice concern-         severe disabilities who have a proficiency for      reservoirs, emptying vacuum cleaner bags,
ing local market conditions.                          these tasks and who want to perform these           policing the grounds. Hours: Monday -
                                                      jobs. Job carving can be a useful tactic for        Saturday, 22 hours per week.
At the heart of these councils is Peer Market-        helping individuals gain experience in paid
ing — having an employer influence other              situations, and for helping employers reach a       Grocer's Assistant: Duties include "facing"
employers to hire individuals with disabilities.      new comfort level with employees with               cans on shelves, arranging produce, unloading
This is much more powerful and effective              disabilities.                                       delivery trucks, light cleaning, recycling
than human service or school representatives                                                              shipping boxes. Hours: Saturday & Sunday,
acting as sole job developers. Employment             Many variables influence job carving. For           16 hours per week.
development benefits from creative profes-            instance, the marketing approach in job
sional rehabilitation expertise, but there is a       carving is deliberate and businesslike.             Gas Station Attendant: Duties include:
major role to be played by having business            Transition/employment specialists should            Pumping gasoline, washing windshields,
folks work face-to-face with people with              approach potential employers as diagnosti-          checking oil and fluid levels, washing and
disabilities in need of employment, and with          cians, ready to determine needs and offer           detailing vehicles. Hours: Monday - Friday:
their peers in the business world.                    solutions to productivity challenges. Another       30 hours per week.
                                                      variable is consumer employment objectives.
Hiring people with disabilities is, unfortu-          No job development effort can take place            Farm Hand: Duties include: moving cattle,
nately, still viewed as a business risk. Hearing      without a thorough understanding of the             clearing irrigation ditches, feeding cattle,
of successful employment from business and            type of work that is suitable and acceptable        bucking bales, assorted tasks performed in
workers with disabilities provides powerful           to a particular individual.                         partnership with the manager. Hours: 7 days
support to employers who have not yet hired.
                                                                                                          per week, 35 hours per week.
Human service roles seem most appropriate in
                                                      Some examples of rural job carving include:
the context of getting these constituents
                                                                                                          Cary Grriffni is Director of Special Projects,
together and providing technical and strategic
                                                      Clerical Assistant: Duties include photocopy-       Rural Institute, University of Montana
support until a quality employment relation-
                                                      ing, formatting and copying computer disks,         and Senior Partner, Griffin-Hammis Associates,
ship has been developed.
                                                      answering phones, assembling documents.             LLC. For more information on job development.
                                                      Hours: Monday, Wednesday, and Friday, 20            Active Employment Councils, self employment,
 Job Carving /Job Creation                            hours per week.                                     and community employment in rural areas,
The process of breaking down jobs into their
                                                                                                          please contact Cary Griffin at
key components and reassigning those pieces
                                                      Mail Delivery: Duties include mail, parcel, or (406) 243-2454.
in more efficient or understandable ways is
                                                      and message delivery for rural county
called job carving. This strategy is a creative
                                                      government offices. Hours: Monday - Friday,
extension of job development that results in
                                                      12.5 hours per week.
job restructuring or job creation (i.e., typical
work duties are reassigned to one or more
                                                      Pet Groomer: Duties include washing dogs,
workers or a new job is created to address
                                                      general animal care. Hours: Monday - Friday,
efficiency needs). While full-time employ-
                                                      20 hours per week.
ment is certainly a reasonable outcome, job
carving is often used with individuals in
                                                      Bank Teller Assistant: Duties include sorting
transition from school-to-work or supported
                                                      documents, operating coin counter equip-

                                                                          PAGE 28               TASH CONNECTIONS. SEPTEMBER/OCTOBER 2 0 0 2
                                                    an environment in higher education where               promoting people with significant disabilities
                                                    students with disabilities would be able to            as faculty members throughout the university.
                                                    thrive and reach their potential. The group
                                                    quickly identified that most institutions of           4. Creating model accommodations exemplifying
                                                    higher education look at accommodations for            the university's commitment to equality of
                                                    students with disabilities from a compliance           opportunity for students with disabilities.
                                                    mindset. It is common to hear that an                  Students with disabilities are entitled to
                                                    institution is committed to compliance with            effective reasonable accommodations and
                                                    the ADA (Americans with Disabilities Act)              should be included in the decision-making
                                                    and other relevant laws. However, BCCC                 process. Syracuse University should be
                                                    emphasizes that the ADA is simply a starting           committed to providing the latest in techno-
                                                    point. Mere compliance does not create an              logical advances that would enhance access for
                                                    environment in which students can reach                students with disabilities.
                                                    their full potential. An attitude that goes
                                                    "beyond compliance" is needed within
INITIATIVES AT SYRACUSE UNIVERSITY                                                                         For more information about BCCC, contact:
                                                    institutions of higher education. As part of           Michael Schwartz, at Schwartz@twcny. rr. com
PROMOTING INCLUSIVE POSTSECONDARY                   their efforts, they wrote a position statement
EDUCATION                                           that reflects key areas of focus for an institu-
                                                                                                           O n C a m p u s a t Syracuse U n i v e r s i t y
                                                    tion of higher education in order to move
                                                                                                           BY VALERIE SMITH
                                                    "beyond compliance."

T        he mission of the Center on Human
          Policy is to promote the full inclusion
          of people with disabilities. Histori-
cally, the Center has focused on issues such as
deinstitutionalization, community living,
                                                    The Beyond Compliance Position Statement

                                                     1. Reshaping V                  ity's conception of
                                                                                                           For the past two years, a partnership between
                                                                                                           Syracuse University's School of Education and
                                                                                                           the Syracuse City School District has brought
                                                                                                           several city school students who are between
education, and family support. In the past          disability,.                                           the ages of 18 and 21 and who have a variety
year, we have focused significant attention on      Disability is more than just a physical or             of developmental disability labels to the SU
inclusion in postsecondary education. This          mental impairment. Accessibility is more than          campus. These city school students audit
article describes two initiatives within the        just compliance with federal and state laws.           classes, work, and socialize every day alongside
School of Education at Syracuse University          Disability is about the human condition, and           their university peers. Most people can easily
that promote inclusion in postsecondary             the Syracuse University community would be             imagine the benefits of this arrangement to
education. While the issues raised in these         enhanced by a broader conceptualization of             the city school students.
two examples are referenced to Syracuse             disability that calls for inclusion, integration,
University, they are applicable to all              and equality. Thus, compliance with laws is            For example, city school participants have the
postsecondary educational settings.                 the starting point, not the bottom line, for the       opportunity to learn in classes to which they
                                                    university community, and disability should            wouldn't otherwise have access, to practice
                                                    be included along with race and gender in              social skills with same-aged peers who don't
                                                    what is defined as a "minority" on campus.             have disabilities, and to spend each day in the
The Beyond Compliance                                                                                      same environments and having similar
                                                    2. Raising disability consciousness on campus.         experiences as their same-aged peers. What is
Coordinating Committee
                                                    Disability is an important aspect of diversity         equally important to recognize is that the
(BCCC)                                              in a university community of scholars, faculty,        university community, including students,
BY THE BEYOND COMPLIANCE                            and students. Inclusion of people with                 staff, and faculty, also benefit from having the
COORDINATING COMMITTEE                              disabilities in the Syracuse University                On Campus students as a daily presence at
                                                    environment provides a learning experience             Syracuse University.
The Beyond Compliance Coordinating                  for all and reaffirms the dignity of all human
Committee is a group of students at Syracuse        beings. Accordingly, disability should be part         Benefits to SU Community
University working to address issues of             and parcel of the university's dialogue on             1. On Campus students add to the diversity
concern to people with disabilities on campus.      diversity.                                             at the university. They help us broaden the
BCCC was initiated by graduate students
                                                                                                           definition of diversity from the traditional
within the Disability Studies Concentration,
                                                    3. Hiring faculty and staff members with               boundaries of ethnicity, religion, and sexual
within the Cultural Foundations of Educa-
                                                    significant disabilities.                              orientation. They provide us with opportuni-
tion Department, School of Education, at
                                                    A pioneering university in the areas of                ties to learn the value of many kinds of
Syracuse University. The students brought
                                                    disability studies and special education,              diversity.
diverse backgrounds and experiences with
                                                    Syracuse University should reflect its commit-
disabilities. The commonality of the students'
                                                    ment to these disciplines by hiring and
experiences was their commitment to creating                                                                                          Continued on page 30

                                                                       PAGE 29                 TASH CONNECTIONS, SEPTEMBER/OCTOBER 2002
Through Our
Continued from page 12

TASH is honored to have Mr. Price
and several of the Through Our Lenses
program participants join us at the
upcoming TASH Annual Conference
next month.

Mr. Price and his students will be
honing their skills by photographing
sessions, special events, attendees, and
more throughout the conference. If
you see them about, feel free to smile
and say "cheese!"

Abby L. W. Crowley, EdD., is
Director of Professional Develop-
ment at the Lt. Joseph P. Kennedy
Institute in Washington, D.C.

Questions about the Through Our
Lenses program may be directed to
Ms.    Crowley at 202-281-2751
or by e-mail:;
                                                      IN MEMORIAM

                                           ter Chloe, who has severe disabilities,   plans, to ensuring the rights of
                                           was segregated and deprived of her        children with disabilities in
                                           educational rights as a child in the      juvenile halls to special education.
                                           Richmond, California school system.
                                                                                     In addition, she spearheaded a
                                           Diane and a few other parents, with       number of landmark legal cases
                                           the assistance of the Disability          which to this day stand out as
                                           Rights Education and Defense Fund         beacons in the struggle for ensuring
                                           in Berkeley (DREDF), developed a          the rights of children with disabili-
                                           national practice of public policy        ties in our nation's schools. She
             Diane Lipton                  litigation and technical assistance to    received a number of awards and
                                           end the segregation of children with      honors, including two American
                                           disabilities across the country. Her      Jurisprudence Awards, the Distin-
                                           local advocacy brought about the          guished Parent Award from TASH,
         Diane J. Lipton                   closing of all disability-segregated      and as well as honors and awards
              (1945-2002)                  schools in Richmond.                      from the Developmental Disabili-
         Disability Rights Leader                                                    ties Counsel, and the National
                                              Diane and the parents she organized    Center in Educational Restructur-
                                              told the State Commission on           ing and Inclusion.
(The following information is provided by the Special Education in 1981, "Segre-
staff and Board of DREDF on behalf of Dianegated education is but another form       She earned a law degree from
Lipton's family, Jim and Daria Armstrong and institutionalization which we view      Golden Gate University School of
Chloe Lipton.)                               as extremely detrimental to the         Law, San Francisco, California, a
                                             growth and development of disabled      M.S. degree in Rehabilitation
                                             and nondisabled children alike." For    Counseling from San Francisco

          iane J Lipton, the Director of over twenty years, Diane never              State University and a BA. from
          the Children with Disabili-        wavered from that conviction, and       the University of California, Berke-
          ties Advocacy program at the       her professional and personal           ley.
Disability Rights Education and              lives were seamlessly devoted to
Defense Fund (DREDF), died in                ensuring the rights of children with    She is survived by her husband
August after at the age of 57 after a        disabilities.                           James Armstrong of Richmond
two year battle with cancer.
                                                                                     California, and daughters Daria
                                           Diane's passion for justice drove her     Armstrong (Richmond, California),
Born in New York City, Lipton was a        through personal sacrifices and           and Chloe Lipton (Emeryville,
nationally recognized parent advo-         professional struggles. She went to       California).
cate. For nearly two decades as a          law school at night and joined
lawyer fighting for the rights of          DREDF (the Disability Rights              Diane Lipton and her family
children with disabilities, as well as a   Education and Defense Fund in             request that any donations, ad-
formidable and successful advocate         Berkeley California) in 1979,             dressed attention: "Diane Lipton
for children and their parents long        where she has served as director of       Memorial Gifts," be made to one of
before she became a lawyer, Diane          the State Bar Trust Fund Program          the following two charities:
was a nationally recognized luminary       and the Director of Parent and
on the front lines fighting to end         Children's Advocacy services.             East Bay Innovations, 440 Grand
disability discrimination. Diane
                                                                                     Avenue, Suite 425, Oakland,
started out her career as a teacher and
                                           Her work on state and federal             California 94610, telephone (510)
rehabilitation counselor, but came to
                                           legislation has had a widespread          832-7126; and/or DREDF, 2212
her true calling as a devoted advocate
                                           impact, from protecting the hard-         Sixth Street, Berkeley, California
for the civil rights of children with
                                           earned rights of parents to partici-      94710, telephone (510) 644-2555.
disabilities in 1979 when her daugh-
                                           pate in their children's educational

                                                        PAGE 31            TASH CONNECTIONS, SEPTEMBER/OCTOBER 2002
Policy Statement                                                                                                     Priscilla Newton, Editor
It is TASH's mission to eliminate physical and social obstacles that prevent         Executive Board
equity, diversity and quality of life for children and adults with disabilities.     Donna Gilles, President                                        Tracy Knight-Lackey
     Items in this Newsletter do not necessarily reflect attitudes held by indi-     June Downing, Vice President                                   Ming-Gon John Lian
vidual members or the Association as a whole. TASH reserves the right to                                                                            Tia Nelis
                                                                                     Jacki Anderson, Chair, Executive Committee
exercise editorial judgement in selection of materials.
                                                                                     Wanda Blanchett, Secretary                                     Liz Obermayer
     All contributors and advertisers are asked to abide by the TASH policy on
the use of people-first language that emphasizes the humanity of people with         Jorge Pineda, Treasurer                                        Barbara Ransom
disabilities. Terms such as "the mentally retarded," "autistic children," and        Nancy Weiss, Executive Director                                Marcie Roth
"disabled individuals" refer to characteristics of individuals, not to individu-     Mike Auberger, Ex-Officio                                      Patrick Schwarz
als themselves. Terms such as "people with mental retardation," "children                                                                           Richard Sobsey
                                                                                     Doug Biklen, Ex-Officio
with autism," and "individuals who have disabilities" should be used. The                                                                           Jeffrey L. Strully
appearance of an advertisement for a product or service does not imply TASH          Kathleen Boundy, Ex-Officio
                                                                                     Fredda Brown, Ex-Officio                                       Lucille Zeph
endorsement. For a copy of TASH's publishing and advertising policy, please
call 410-828-8274, ext. 102.                                                         Kathleen Gee

Please Check Appropriate Categories                    (   ) Educator/Teacher (K-12)                                 (   )   Related Services Provider
(not more than three):                                 (   ) Government Personnel                                    (   )   Self-Advocate/Person w/ Disability
( ) Administrator/Adult Services                       (   ) Legal Services Provider                                 (   )   Social Worker
( ) Administrator/Education                            (   ) Occupational/Physical Therapist                         (   )   Speech/Language Pathologist
( ) Administrator/Other                                (   ) Parent/Family Member                                    (   )   Special Education Teacher
( ) Adult Service Provider/Staff                       (   ) Personal Assistant                                      (   )   Special Education/Support Specialist
( ) Advocate/Friend                                    (   ) Professional/Public Policy Advocate                     (   )   Staff Development/Trainer
( ) Behavioral Specialist                              (    ) Professor/Instructor-College/University                (   )   Student
( ) Case Manager                                       (   ) Psychologist                                            (   )   Supported Employment
( ) Early Childhood Services                           (   ) Regular Education Teacher/Administrator                 (   )   Other

M o v i n g ? Please notify TASH of your new address.
General Membership (individual)                                    $103*.            ( ) Mastercard ( ) Visa ( ) Discover
Organization/Subscription (all organizations, schools, libraries,                    Card Numoer                                      Expiration Date
universities, etc. must use this category)                         $230*.
Associate Membership (for people having an annual household                          Signature
income of $25,000 or less, and for whom payment of the full                           ( ) I would like to spread my payments out. Enclose 1/3 and you will
fee would present a financial hardship)                             $60*.          receive 2 additional invoices at monthly intervals.
Lifetime Member                                                   $ 1300.
Add $10 for postage costs for members in Canada and $25 for members
outside the U.S. and Canada.                                                         Please make check payable to:TASH
Group Discount Rate (When three or more individuals from the same                    Address: 29 W. Susquehanna Avenue, Suite 210
organization join as International/Chapter or International Only members             Baltimore, MD 21204
at the same time -- Save $20 per membership!)                                        TeIephone:410/828-8274 Fax: 410/828-6706
Funds must be submitted in U.S. dollars and checks must be drawn on a U.S.
bank. Add a $20 processing fee if check is not drawn on a U.S. bank If you           , T h e s e pr i c e s a r e for b o t h i ntern ational and Chapter memberships. For
would like to charge your membership, please fill in the necessary information       I ntern ational-Only or Chapter-Only rates, please call us at 1-800-482-
in the next column. For a list or membership benefits, please call 410-828-          8274
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