VOLUME 28 * ISSUE NUMBER 9/10 * SEPTEMBER/OCTOBER 2002 CONNECTIONS Equity, Opportunity and Inclusion for People with Disabilities since 1975 Customizing Employment Opportunities for People with Disabilities SEPTEMBER/OCTOBER 2002 TASH MISSION 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 environments; • 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 A 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 are: 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 matthewslaw.bravepages.com> 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 months. 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 operations. 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: email@example.com 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 S 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 UNFINISHED BUSINESS 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: www.edworkforce.house.gov. 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 matthewslaw.bravepages.com. 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 (firstname.lastname@example.org)or Kristy Kirkpatrick Jamie Ruppmann (email@example.com). 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 HyunSookPark 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 <www.tash.org> 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 <www.tash.org/2002confer- 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 disabilities. For an updated listing of conference sessions, accommodation, travel, child care, and other information, as well as the conference registration form, please visit www.tash.org/2002conference 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 www.tash.org/2002con- 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 Bernard 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 A 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 division. 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 G 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 reservations. • 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 wage. 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 individualized? 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 job. 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, Goals 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 leadership. 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. firstname.lastname@example.org of Education, grant #H133B980037. This www.communityinclusion.org 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 years. 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 umt.edu. 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 References 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 W 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 country. 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: www.careeronestop.org 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 Resources 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 email@example.com; website: Connecticut, Florida, Hawaii, Illinois, One-Stop system to the meet the needs www.onestops.info 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- firstname.lastname@example.org; website: www.ncwd- Stop Career Centers, which are mainly nia, Rhode Island, South Dakota, youth.info 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 Wisconsin. Career Center, contact America's Service with disabilities transitioning from Locator at: www.servicelocator.org, 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 www.nawb.org 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: CivilRightsCenter@dol.gov; web site: services, which are designed to assist www.dol.gov/oasam/programs/crc/ It is important for disability advocates young people in obtaining vocational crcwelcome.htm 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- email@example.com page). 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. RURAL 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, firstname.lastname@example.org 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 Lenses 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: email@example.com; 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 of 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 D 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 8274, ext. 107.