Futurity May 1991 Governor's Planning Council on Developmental Disabilities Thoughts about Youth Leadership and Social Change "People with diversity; including people with the label of disabilities, have for the most part been excluded from the discussions and participation in youth leadership. People who are seen as marginal have not been viewed as leaders, This frame of reference is not only inaccurate, but more importantly tigerous." These observations were recently stated by Jeff Wrully, executive director of the Association for Community Living, Colorado, in a concept paper, Thoughts about Youth Leadership (April 4, 1991). Following are excerpts from Strolly's thoughts about including all young people in youth leadership programs. The future leaders of our country are the young people who are in our schools today. What these young people think, believe in, and act upon will determine, in part, what type of society we will have in the future. The need for young people to understand the responsibility of citizenship is one concept tit is important to ensure that we have a participatory ~. We must realize that all young people are capable of leadership, a concept which can be explored by considering the following dimensions: vision; commitment and action; influence and inspiration; presence; and Self-determination and independence. Vision: Having a vision for a desirable future for all young people is critical. , The vision should include such issues as love, friends, control, power, money, opportunities, choices, and risk. Everyone is capable of having a desirable future, and everyone should be supported in trying to obtain their dreams. Commitment and Action: Knowing your vision is one thing, acting upon it is another. Action needs to move toward a desirable. future. We must see the need for long-term involvement in social change. Leadership is about people staffing involved in the cause over time and not dropping out either when things get hot, things don't move quickly enough, or if the issues are not sexy. Influence and aspiration: Leadership is not about power for the sake of power. It is about influencing others so that positive change can take place. influencing other people to take initiative or to act on behalf of another person is what we are attempting to achieve. This occurs, in pm through people's inspiration (as well m' commitment) m. the cause. Providing inspiration will rally people around enxu.ing positive change. Presence: people's mere presence is one attribute of leadership. Just being a @t of `a group, being around when the issues are discussed or action being taken, is important. One's mere presence is a gift that should be cherished. Without people being around, individuals cannot make change. Continued on page 4... Congratulations, Dr. Bruininks! Robert H. Bmininks, professor of educational psychology, has been award the first Emma M. Birkmaier professorship in Educational Leadership by the College of Education at the University of Minnesota. The three-year appointment is made in recognition of Bruininks' scholarly achievement and leadership in education. Bruininks is the current director of the Institute on Community Integration, University Affiliated program, and president of the ~enw Association on Mental Retardation. In the mid-1970s, he served as the executive director of the Minnesota Governor's Planning Council on Developmental Disabilities. "Bob has already made a tremendous contribution to the College of Education," said Dean William Gardner. `!I'm sure this professorship will allow him to expand his research and accomplish even mom" Inside This Issue... A parents dream IEP meeting Adequate Health Care... A Human Right Andrew, and his friends enjoy a music lesson at the Conant School. Resources Innovations: `Statewide Systems Change Project, is a new quarterly newsletter published by the University of New Hampshire. It is intended to inform classroom teachers, integration fseiht.ors, eonding teachers, -professionals, and iuiyrme whose job it is @, the students what they n% to know to be successful in classrooms, schools, and communities. A nominal f~ may b charged. Contact Office for Training and Education hUIOVStiOIIS, University of New Hampshire, The Concord `Center, IO Ferry S~ No. 14, Concord, New Hampshire 03301; 603/228-2084. Sexuality Rights Protection Policy, Colorado Committee on Sexuality, 1991. This publication resulted in response to a request from Speaking for ourselves a self- advocacy group. Policy statements were developed and structured under the sponsorship of the Colorado Developmental Disabilities Planning Council. This policy is to guide the community and empower persons with disabilities in Colorado to ensure that their inherent sexual rights and basic human needs are affhiwl defended, promotecl antirespeeti such as: 1) A" persons have the right p privacy in order to have the opportunity for sexual expression; 2) ail persona have a right to sexual expression, including the rights to develop sexual relationships to choose sexual orientation, marital status, pmeration and parenting; and 3) all persons have the right to access services, including education, health care, and other community resources. For copies, @: Rocky Mountain Resource and Training .Institute, U80W255-IXRS, or 1/800/255-3477; or Colorado Developmental Disability Planning Council, (303) '894-2345. My Dream IEP Meeting By Beth Dixon Wouldn't it be great if parents could look forward to their child's IEP a (Individual Education Plan) meetings? If they could go knowing they would walk out feeling good, proud, and satisfied? For many years, as the date of my son's IEP meeting drew near, knots would form in my stomach. "I knew several things would characterize the meeting. The room would be f~ with @o many people, sometimes as many as 21, all eager to push for their own agendas. The meeting would begin with evaluations, present levels (of functioning), and a list of things that Andrew could m do. About then, the tension would grow into a sick f~ing. Goals had been written by specialists who discussed how they were going to "fro" Andrew's problems, with the hopes of "getting him ready" for a regular classroom (7 out of 10 times, with 85 percent accuracy). By the time the bting endril, my husband and I were so drained and depressed it was had to function. We've come along way from those discouraging times. What has changed? Andrew is now a full-time member of a regular second grade class in our neighborhood school. We meet with just the immediate team (parents, teacher, integration facilitator, therapists) and begin with positive stories of what has happened in the classroom and on the playground, stories of friendships and skills that are growing. We list Andrew's strengths, and discuss his weaknesses by deciding what can be done to improve the quality of his day to make it meaningful for him. We talk about a beautiful child and his `gifts, the things he is learning and what other children are learning from him. When we set goals, no one _ that Andrew doesn't isolate his index finger on command 2 out of 3 times. We are that he is doing the same thing as the rest of the fi class. We "depend upon our dreams to set goals for Andrew thstw~ help him succeed in society when his setiool days are over. My husband and I now leave IEP meetings in a positive frame of mind and are very proud to be Andrew's parents. He is a wonderful little boy with many gifts to share, and they are now realized. My dream is that all "parents can experience this kind of IEP meeting and let those memories of former meetings slip into the past. How to Create a Dream IEP Meeting Limit the number of people to key players. Have the meeting in a regular education setting. Make sure the team has a shared vision for the student. Start off with the positives. Try to imagine how it would feel to hear only the weaknesses of someone you love. Write goals that enhance the student's ability to participate in typical opportunities, now and in the future. Invite peers to be part of the IEP process.. Permission to reprint this article was granted by Innovations Project of the Institute on Disability, University Affiliated Program, University of New. Hampshire and the New Hampshire Social Education Bureau, funded by the U.S. Department of Education, Office of Special Education and Rehabilitative Services. Beth Dixon, a business woman from Concord, "New Hampshire, has four children, ages 8-20. Andrew is her youngest and attends second grade at Conant Elementary School Concord, NH. Events June 5.8, 1991 National Conference on the Prevention of Primary and Second Disabilities, Atlanta, Cosponsored by the National Council on Disability, "tie Centers for Disease Control, and the Minority Health Professional Foundation. Contact: PACE Enterprises, 17 Executive Park Drive, Suite 200, Atlanta GA 30329; 404/633-8610. June 23-23, 1991 Second Annual meeting of All States on Assistive Technology, Kansas City, Missouri. Sponsored by the RESNA Technical Assistance Project, 1101 Connecticut Avenue, NW, Suite 700, Washington, DC 20036; 202/857-1140. July 24-27, 1991 Annual Conference of the Association on Handicapped Student Service Programs in Post secondary Education, Minneapolis. Contact AHSSPPE, P.O. Box 21192, Columbus, OH 43221-0192; 614/488- 4972, or Judy Schuck, co chair, Minneapolis Community College, 1501 Hennepin, Minneapolis, MN 55403; 612/341-7549. August 5-8, 1991 "Young Children, Families, and Professionals: Strategies for Community Intervention," sponsored by Minnesota Early Intervention Institute, Department of Education, will be held at St. John's University, Collegeville. For more information, contact: Jeanne Seigel, Institute Facilitator, Moorhead State University, Box 181, Moorhead, MN 56653; 218/299-5836. October 2-4, 1991 "Independent Living: Preparing for the 21st Century," Oakland, California. Sponsored by Center for Independent Living, National Council on Independent Living, and World Institute on Disability. Contact: Dianna Dal Aquilar, 2539 Telegraph Avenue, Berkeley, CA 94704; 415/8414776 (voice); or 848-3101 (TDD). October 10-12, 1991 "Thirteenth International Conference on Learning Disabilities, Minneapolis. Sponsored by Council for Learning Disabilities, P.O. Box 40303, Overland Park, KS 66204; 913/492-8755. `Adequate Health Care-A Fundamental Human Right, Not Privilege or Commodity,' says Ohio ask Force The Health Insurance Task Force of the Ohio Developmental Disabilities Planning Council recently released its report and recommendation's, Insuring Health Care for People with Disabilities (October 1990). ReghM. Sweeney, chair, pleaded in her cover letter in the repeat, "Join us in telling state and national leadership that comprehensive problems require a comprehensive solution--not more `tiering at the edges of a system that cannot be fuuxl. Pl~ join us in insisting that national leadership shape a different kind of public policy, where adequate health care is no longer considered a privilege or a commodity, but a fundamental human right." Request for Award Nominations Catholic Charities, within the Archdiocese of St. Paul and Minneapolis, annually gives an award to provide recognition to a person or program which has demonstrated success in enriching the dignity of persons with disabilities within the Catholic Community. Preference will be given to those involved in advocacy and social change. A $200 stipend will be awarded Nominations am due May 31, 1991. Contact Mary Jane Steinhagen, 215 Old Sixth Street and Mandated Activities and Mandated Activities St. Paul, MN 55102. 612/222-3001 Educational Scholarships Available Courage Center administers a Scholarship for People with Disabilities Program. The program assists people with disabilities to pursue education and or gain technical expertise beyond high school. Deadline for application is May 31, 19!11. Contact Director of Vocational Services, Courage Center, 3915 Golden Valley Road Golden Valley, MN 55422; 612/520-0553. Technology Conference Scholarships Available Financial assistance, or scholarships, am available to individuals with disabilities who wish to attend Closing the Gap Conference, October 17-19,1991, Radisson South Hotel and' Hotel Sofitel, Minneapolis. The 1991 Conference builds on a tradition of providing a comprehensive examination of the most current uses of technology by persons with disabilities and the professionals who work with them. Contact: STAR Program, 300 Centennial Building, 658 Cedar Street, St. Paul, MN 55155; 612/296-2771 (voice), or 612@5-9962 (TDD) Lending Library The following videotapes (VHS, 1/2") are available on a two-week basis. The only cost to the borrower is the return postage. Teaching People with Developmental Disabilities, Oregon Research Institute, Research Press; 1988. This series features R four videotapes and four workbooks: 1) Task Analysis; 2) Prompting; 3) Reinforcement, and 4) Error Correction. Starting Over: Life After A Severe Head Injury, North Carolina Council on Developmental Disabilities, provides methods and techniques for assisting individuals to transfer skills learned in rehabilitation settings to their homes. Families Facing Transition (25 minutes) portrays three families with a member with a disability making a transition to adult life. The following two productions are available on one cassette: Supported Employment: More Than Just A Job (26 minutes), New Hampshire, features StOtit?S of several individuals WhOfK. lives are enriched by having "real work." A Waiting Work Force: Ready Willing and Disabled (26" minutes), National Center for Research h in Vocational Education, Ohio State University, emphasizes an untapped national resource--people with disabilities in the labor market. Continued from page 1 YOUTH Self-Determination and Interdependence: "Self-determination - must be imbedded within the context of interdependence. Only when people are bonded in groups for support and trust will the life and social skills of all members be enhanced." (F. Wartleld-Coppock, Concept I@er on Youth Leadership and Self-Determination, 1990). Living with one another on a daily basis and demonstrating that all people can live, learn, work, play and be friends are acts of moral courage that has yet to be fully realized in this cowury. The mission of Youth Leadership is to enhance and develop leadership skills in ALL of our young people. Leadership will be manifested in a variety of ways and settings-- statewide and heal; public policy focus or in neighborhoods. Our young people can be empowered to realize and use their personal talent on behalf of themselves and others to achieve an inspired vision linked to committed action toward positive change. From page 3 HEALTH CARE The Task Force called for a national, publicly administered health insurance system which guarantees adequate health care for all citizens. "The current national approach is so chaotic and, in many ways, wrong, that it is unredeemable without basic change:' the TX Force observed. With respect to persons with disabilities they stated, "Theirs is an intimate basis which can involve personal rejection by insurers and providers, endless hoops and red' tape in government programs, benefits that are inadequate in both private and public coverage, and practices in each which are biased toward institutionalization and im~verishnient." "Americans deserve a pragmatic national response to the health ~ immranee crisis, informed by the positive practices of the Canadian system," the Task Force recommended, adding: "The Task Force has found no basis ii 21 months of research to fear that a publicly administered health inmimnce program in a nation such as this would impede its distinguished leadership in medical research and tihnology, or diminish the level of care Americans expect," Request a copy of the report from: The Ohio Developmental Disabilities Planning Council, 35 East Chestnut Street, E$h Floor, Columbus, OH 43266-2505; 614/466-5205 (voice), or 614/644-5530 (TDD). Futurity Bulk Rate U.S. Postage - PAID Permit No. 171 MINNESOTA STATE PLANNING AGENCY St. Paul, MN ,, Governor's Planning Council on Developmental Disabilities 300 Centennial Office Building 656 Cedar Street, St. Paul, MN 55155 Roger Strand, Editor 612C2W49111 612Z?98-9962 TOO TIME DATED MATERIAL Futurity Governor's Planning Council on Developmental Disabilities Barnes & Noble Launches `Children with Special Needs Collection' Barnes & Noble, Inc. New York, NY), the nation's largest bookseller, announced on April 1, 1991, a unique new program designed as a central resource for information about children with disabilities. The Children with Special Needs Collection, found in 500 B. Dalton Bookseller and Barnes & Noble bookstores nationwide, brings together for the first time a widely available, convenient authoritative collection of books on children with disabilities, to serve their families, friends, tgachem, and other professionals. Steve Riggio, executive vice president of Barnes & Noble, is the giving force behind the development of the Children with Special Needs Collection. "'This program was specifically designed to serve parents who seek broad source of information, yet are stymied by an inability to find it," Riggio said. Riggio, who has a three-year old daughter with Down" syndrome shared his own frustrations in finding information. "I have personally felt lost in searching for well-written, informative books on' the subject," said Riggio. "Once I found that there ,m indeed many excellent books available, I wanted to get the word out to other parents. This collection is the result of that desire," he added. The collection will feature over 50 titles in several categories: specific disabilities, medical services and health care, educational opportunities and recreational activities, and supportive guides for parents and other relatives. The books will be prominently displayed in the Family and Child Care sections. A comprehensive brochure about the collection is available free to customers in all participating stores. Customers may also place special in-store orders for specific titles stocked by book distributors. "Many parents, when learning they have a child with a disability, go to their local bookstore or library to seek information. Usually what they find is nothing. Now that will change," said Patricia McGill Smith, executive director of the National Parent Network on Disabilities. "We commend Barnes & Noble for starting this desperately needed program." To be seen as having a disability by Nancy Ward The following are excerpts from an article that appeared in Links (February" 1990), published by National Association of Private Residential Resources (NAPRR). Nancy Ward works for People First in Lincoln, Nebraska. NAPRR executive director Joni Fritz was seated next to Ward on a flight from Lincoln and they soon found out they Continued on page 2 Ten Quick and Easy Things To Do When You Meet AAC Users Here are some tips for when you meet a person who uses an alternative augmentative communicator: Introduce yourself. Ask User to show YOU how their communication system works. Pause and wait for user to construct a message. Be Patient. It might take awhile. Don't feel you have to keep taking all the time. Relax and get into this slower rhythm of exchanging information. Give the user an opportunity to ask you questions or make comments. Don't finish the user's sentences/words for him/her unless you get permission. Interact at eye level if at all possible. Grab a chair if the user is in a wheelchair. Pay attention to facial expressions and gestures. Be honest. If you don't understand, admit it. Ask the user to try again. Talk directly to the user, not to his/her friend From Blackstone, S. (1991) Augmentative communication News. Inside This Issue... What it is like to be seen as having a disability. Recreation/leisure guidebooks published. Event June 19-21, 1991 "Energize 91" is the theme of the annual conference sponsored by the Minnesota Developmental Achievement Association, Minnesota Association of Rehabilitation Facilities, and the Staples Technical College. The conference will beheld at Madden's Resort on Gull Lake near Brainerd. ,Contact: MnDACA at 612/647-9200, or MARF at 612@16-0900. Prize Offered for Computer Whizzes John Hopkins University is conducting a `" national search for computer based application to help persons with physical or learning disabilities. The program is made possible by grants from the National Science Foundation and MCI Communication Corporation, A grand prize of $1,000 and more than 100 other prizes will be awarded. for the best ideas, systems, devices and compelling programs developed by Professional, amateurs, and students. Entry deadline is August 23, 1991. For more information write to: Computing to Assist Persons with Disabilities, P.O. Box 1200, Laurel, MD 20723. Human Services R&D Center to offer 3 days of training Registry Hotel, Bloomington, MN Thursday, July 11: Person-Centered Organizational Change with Gail Jacob, Officer of TASH and Executive Director of O@iotts in Community Living. Friday, July 12: Inclusive Community Building with Kathy Bartholomew-Lorimer, -n Square fioj~t, Chicago and Louisville. Wednesday, July 31: Current Understanding of Personal Futures Planning with Be@ Mount, Developer of Personal Futures planning. @tl 612/227-3292, Pay Lyon, for details. Continued from page 1 HAVING A DISABILITY had interests in common. Fritz said, "Nancy's expression of what it - means to be perceived as a person with a disability is far more articulate than anything I could have written." To be seen as having a disability in society's eyes. . . ...is to be stigmatized, isolated, and patronized. when we feel that we are more alike than different. ...is to have everyone controlling your life but you. You're not supposed to know "how to speak for yourself. We are learning how to Speak for ourselves. Who better knows what we want than us? . . . is to be pitied and seen as not being able to do something. All we want is to be given a chance to contribute to society rather than society supporting us. . . .is to go through a system that teaches you things' you already know. All we want is for the system to see us as an individual and to with the things we need help with, not what the system thinks we need. . . .is to be seen as different, All we want is the chance to make friends, to go to school or have a competitive job, and have a home just like everybody "else. . . .is not to be taken "seriously. "We want to show people that we know how to vote. We're taught what the issues are. . . . is to be shut away in an institution away from the real world. We want to be given the same chance to make mistakes and to learn and +, grow from them just like everybody else. . . . is to be a statistic because we aren't asked what supports we need to live a normal life. Who better than us will know what we need and want? . . . is to be seen as handicapped. We want to be seen as people for our disability second. . . . is to be in .a service system and have everyone telling you what's wrong with you. What we really need is to be shown how to do things for ourselves. . . . is to be seen as being diagnosed with whatever evaluation people come up with. When we could have told them what the evaluation said, if given the chance to. . . . is to have a strong cover so people can't see how much they hurt you by their labels. What we want is for society to see that we're more alike than we are different. . . .is to go through each step of a program to progress to the next step when you already know steps one to five. When what we want is to be shown how to do things we don't know. How are people going to know what we want if they don't ask? In the words of another: "To be seen as having a disability is not to get discouraged even if you want to and not to cry, and not to hurt, and not to be scared, and not to be angry, and not to be vulnerable, and not to laugh too loud, because if you do you only prove. you have a disability even if you don't want to be treated that ,way. And so you become a nothing in a no-world and you w not." Resources ADA Information: The U. S. Department of Justice has released a pocket guide on the Americans with Disabilities Act (ADA), a listing of statutory deadlines relative to ADA, and a fact sheet containing Title IH. Copies are available from Mr. James D. Bennett, Coordination and Review, " Civil Rights Division, Department of Justice, 320 First Street, NW, Washington, D.C. 20534, 202/307-2220. Copies of ADA are also available in Braille, Cassette, Large Type and .Flexible disk. from the American Printing House for me Blind, P.O. Box 6085, Louisville; KY 40206; 502/895-2405. In addition, the ~stem Paralyzed Veterans Association (EPVA) has published, Understanding the ADA which is a summary of the Act. to receive a free copy of the booklet, write EPVA, 7220 Astoria Boulevard,. Jackson Heights, NY 11370-1178, or call 800/444-0120. Tools `of the Trade: A hands-on program to Train Supported Employment Personnel, Don Lavin, Kathie Piieve, and Anthony J. Gantenbein, Rise, Inc., 1991. This set of seven books was prepared for individuals to learn a variety of functional roles as supported employment specialists and for program managers" and' administrators. The volumes are interactive in nature with exercises and activities to assist the learner in demonstrating competencies. The books are entitled: 1) Ready, fire, aim! A manager's guide; 2) An introduction to supported employment; 3) Career planning and job development; 4) Strategies for training and ongoing supports; 5) Inclusion: the cornerstone of supported employment; 6) Case coordination: blueprint for success; and 7) Survival skills for superior employment .qxxkdists. Contact: Rise, Inc., 8406 Sunset Road, NE, Spring Lake Park, MN 55432. 612/786-8334. SAFE: Stopping AIDS through Functional Education, Oregon Health Sciences University, Child Development and Rehabilitation Center, Portland, Oregon (1990). This is a comprehensive curriculum package designed to provide people who have developmental disabilities with information that can protect them from HIV infection. The' curriculum makes no demands on the learner's ability to read. Eighteen lessons comprise video segments (videotapes and slides), activities, and illustrated handouts. cost: $60.00. Contact: Oregon Health Sciences University, CDRC Publications, University Affiliated Program, P.O. Box 574, Portland, OR 97207. 503/494-7522. Note: One copy is available on a two-week loan basis. Please see "Lending Library" on page 4. SS1 New Opportunities for Children with,, Disabilities, Mental Health Law Project. Due to expansion of eligibility criteria an estimated 12,000 more children with severe disabilities may qualify each year for Supplementary Security Income (SS1). Billions of dollars in cash payments and Medicaid benefits will go previously ineligible children. Contact: MHLP, 1101 Fifteenth Street, NW, Suite 12.12, Washington, DC 20005; 202/467-5730. Mark Your Calendars August 1, 1991 (4:30 to 7:30 p.m.) "Adults with Deaf & Blindness Speak to Parents" is the theme of a workshop m be sponsored by In Touch, Inc., through a grant from Hilton Perkins Foundation. The workshop will beheld at St. Stephens Church, 4439 West 50th Street, Edina. The workshop is to provide a forum for parents to develop a support network and to gain information about resources available to them. For more information and to register, contact: In Touch, Inc., 111 Third Avenue South, Suite 30, Minneapolis, MN 55404; 612/342-2066 TDD/voice. August 2, 1991 (2:00 to 10:00 p.m.) Join the Celebration of the passage of the Americans with Disabilities Act at Lake Phalen Park, St. Paul, MN. Several agencies and organizations will sponsor this day of festivities. For more information, call Jan or Sylvia at Metropolitan Center for Independent Living, Inc., 612/646-62M" (voice/TDD). September 30 and October 1, 1991' "Learning for Life" is a workshop to be held in the Twin Cities that will .focus on the inclusion of children in their school communities. It will be led by Marsha ` Forest and Jack Pearpoint from Canada. Marsha Forest is director of the Center for Integrated Education and Community. Jack Pearpoint has been a leader in the international literacy movement for the past 15 years, and is a lecture, writer, and administrator in building inclusive . communities. The workshop will be sponsored by the Hopkins School District, Minneapolis Children's Medical Center, and the. Institute on Community Integration of the University of Minnesota. ,For more information, contact Torn Koch at 612/933- 9236, or Gaye Rosenthal at 612/863-6870. Lending Library The following items are available on a two- week loan basis. The only cost to the borrower is the return postage. SAFE: Stopping Aids through Functional Education (curriculum kit with slides and videotapes), @g(in Health Sciences University, Child Development and Rehabilitation Center, Portland, Oregon. (See description under "Resources on page 3.) Peer Tutoring: Children Helping Children (VHS cassette, 23 minutes), Colorado Developmental Disabilities Council. The Sexuality of Your Child with Disabilities (VHS cassette, 58 minutes). Assistive Technology: A Mother's Perspective (VHS cassette, 15 minutes). SCOLA Publishes Guidebooks Arc Ramsey County has recently published two guidebooks which can help other communities to establish integrated community recreational programs. The guidebooks tie a result of the SCOLA Project (Schwl + community = opportunities for Leisure Activities). SCOLA Wm funded by the Minnesota Governor's Planning Council on Developmental Disabilities. Community Recreation and Children with Developmental Disabilities: Fun Futures, Tip Ray, Arc Ramsey County, St. Paul MN (1991). This booklet attempts to answer commonly asked questions. generated by parents about how to encourage youth to be active m integrated community recreation. Emphtiis is on how children need opportunities to play, be with friends, and have FUN!" SCOLA Leisure Activity Fun Guide, Are Ramsey County, Tip Ray, St. Paul, MN (1991). This guide highlights the activities of SCOLA that addressed the leisure needs of youth with developmental disabilities ages 14-21 years. Activities of the project included: parent empowerment training, self-advocacy training, technical assistance and training of leisure service providers, emlition building, and demonstration efforts. Free copies are available from: Are Ramsey, 425 Etna Street Suite 35; St. Paul, MN 55106 ~ (612/778-1414, Voice, or 612/778-0738, TDD). Futurity Bulk Rate U.S. Postage PAID Permit No. 171 MINNESOTA STATE PLANNING AGENCY St. Paul, MN Governor's Planning Council on Developmental Disabilities 300 Centennial Office Building 658 Cedar Street, St. Paul, MN 55155 Roger Strand, Editor 612/2964616 612/296-9962 TOO TIME DATED MATERIAL printed on recycled paper July 1991 Futurity Governor's Planning Council on Developmental Disabilities Zebley Decision Allows Reconsideration of SSI Eligibility for Children The following article by Stephanie Butz, entitled "The Zebley Decision: It May Affect Your Patients," appeared in a recent newsletter published by the American Academy of Pediatrics. In 1980, Brian ~bley, a child with congenital brain damage, was eligible for Supplemental Social Security Income because I@ disability qualified him according to the medical listings he needed to meet. Interestingly, two years later Brian was not eligible. At the time, eligibility for Children Under SS1 was determined only by a medical listing, where as eligibility for adults was . determined by a listing and by w@xher their disability kept them from working. On February 20, 1991, the Supreme Court, in the Zebley Case, required that the Social Security Administration develop new standards. The new way of determining eligibility not only takes into consideration the medical listings but , also the effect of the disability on the child's ability to function. The Supreme Court decision also requires that all children who applied for Social Security Income since January 1, 1980, be reconsidered under the new eligibility rules. How will these families be located?. The Social !Security Administration will send out a letter to every child who applied; however, they will only send the letter to the address the child lived at when they `applied. Public Service Announcements will also be used. The difficulty will be in locating these children. The children eligible to apply in 1980 maybe as old as thirty now. After a family receives the notice, they send back a postcard and the application process begins. Cases will be evaluated on the basis of evidence which may include an Activities .of `Daily Living questionnaire, and reports submitted by school teachers, family members, doctors, guidance counselors, etc. Cases will be reviewed by the Disability Determination Section of the Social Security Administration. It is believed that the total process of identifying and reviewing the cases will take twenty months. You, the reader, may be aware of many of the families and will want to help identify them. Call your local Social Security Office for more information. Institute Awarded Funding for Regional Information' Exchange This fall, the Institute on Community Integration at the University of Minnesota will join the national network of Regional Information Exchange (Knowledge Diffusion) Programs. The U.S. Department of Education, National Institute on. Disability and Rehabilitation Research awarded a $200,000 grant to establish the North Central Regional Information Exchange (NCRIE). NCRIE will serve Region V, which encompasses Illinois, Indiana," Michigan, Minnesota, Ohio and. Wisconsin. NCIUE address the critical need within Region V to identify, document and share information on exemplary practices aid programs to encourage the adoption or' adaptation of these practices and programs by state and local Governor's Council on Disabilities Planning Developmental Transferred to Department of Administration The Minnesota 1991 Legislature, as one of its efforts to balance the budget abolished the State Planning Agency. This agency has served as the host of administering agency of the Governor's Planning Council on Developmental Disabilities since 1972. In the same bill, the governor's Planning Council on Developmental Disabilities was transferal to the Department of Administration. Thus far, this action has resulted in making only minor administrative changes. Our address and telephone number will remain the same, the same staff have been remained, and business will proceed as usual. It should be noted that long-range planning for the State of Minnesota will now be conducted by the newly created Office of Strategic and Long Range Planning, which will begin its operations on July 1, 1991. Inside This Issue... New York State studies fiscal and economic impact of institution closures. Minnesota Legislature adopts "People First" language in education statutes. Mark Your Calendars August 2, 1991 (2:00-10:00 p.m.) Join the Celebration of the passage of the Americans with Disabilities Act at Lake Phalen Park, St. Paul, MN. Several agencies and organizations will sponsor this day of festivities. For more' information, call Jan or Sylvia at' Metropolitan Center for Independent Living, Inc., 612/646-6206 (voice/TDD). September 30 and October 1, 1991 "Learning for Life" is a workshop to be held in the Twin Cities that will focus on the inclusion of children in their school communities. It will be led by Marsha Forest and Jack Pearpoint from Canada. Marsha Forest is director of the" Center for Integrated Education and Community. Jack Pearpoint has been a leader in the international literacy movement for the past `15 years, and is a lecturer, writer, and administrator in building inclusive communities. The workshop will be sponsored by the Hopkins School District, Minneapolis Children's Medical Center, and the Institute on Community Integration of the University of Minnesota. For more information, contact Tom Koch at 612/933- 9236, or Gaye Rosenthal at 612/863-6870. November 21-23, 1991: TASH, The Association for Persons with Severe Handicaps, will hold its 18th Annual Conference at the Hilton Hotel and Towers, Washington, DC--''Building Futurity." Attend conference courses "TASH TECH" on November 20: legal training, facilitated communication, housing, inclusion, communication skills, and pediatric AIDS. Contact: TASH, 7010 Roosevelt Way, NE, Seattle, WA 981'15- 5650. 206/523-8446 (voice) 206/524-6198 ('TDD). New York Studies Economic Impact of Developmental Center Closures The Office of Mental Retardation and Developmental Disabilities (OMRDD) in the state of New York has released a report The Fiscal and Economic Impact of Developmental Center Closure, 1987-1990 (November 7, 1990), An analysis was conducted of: 1) pre- and post-closure fiscal and employment data from the Rome, Craig, and Westchester Developmental Disabilities Service Offices (DDSOS) where the developmental center closures were completed; and 2) pre- and interim-closure data from the Newark, Bronx, and Manhattan DDSOS where the Developmental Centers will close within the next one to two years. Fiscal Findings The average post-closure per diem operating costs (net of Federal Medicaid revenue) for the six DDSOS were approximately 9 percent lower than the pre- closure costs, dropping from $149.52 million to $135.69 million. During the 3 to 5 years of transition toward closure (moving people from the institution to the community) costs increased because of staff serving fewer individuals. However, once the transition process was completed, the per diem costs dropped to levels consistent with the pre-closure costs. The closure program can provide the state with significant capital savings if the closed campuses can be used for other state purposes. The savings result because of the cost differential between rehabilitation of the existing developmental center and construction of a new facility. For example, the closing of Rome and Craig developmental center campuses to provide other state services have approximated $107 million. In addition; substantial closure related savings may become possible though the use of tie Meilc"tid Home and Community Based Services Waiver.' Economic Findings There was little effect on state employee levels as a result of the closure program. For example, the establishment of correctional facilities in the Rome and Craig DDSOS increased state employment levels by approximately 50 percent (representing almost 1,500 new jobs). There was a corresponding change in locil personal income. In the Rome and Craig catchment areas, the annual increase in personal income was approximately $47 million and $10 million, respectively. These represented a 1.6 percent and 0.4 percent increase in the personal income of the entire catchment areas. Construction related earnings in the catchment areas were increased by 3.9 percent and 1.0 percent respectively. In another report, A Mandate for the 1990s: Closing Developmental Centers in New York State (December, 1990), the Office of Mental Retardation and Developmental Disabilities proposes to develop a plan toward an accelerated closure of the remaining Developmental Centers by the year 2000. "Independent fiscal analyses of clos~e demonstrate that it is the most cost-effective course to take," the writers of ~e report stated. Mark N. Brandt, Director of the Arc NYS was quoted as saying, "Clearly the history of the past decade has shown us that even individuals with profound mental retardation can live within a small community setting with proper support. I think" the institutional model is over." Copies of these reports maybe requested from: "NYS Office of Mental Retardation and Developmental Disabilities, 44 Holland Avenue, Albany, NY ~ 12229. 518/473-1997. Resources A Summary of Reports Prepared by State Developmental Disabilities Planning Councils: Independence, Productivity, Integration for People with Developmental Disabilities; Executive Summary, (U.S. Government Printing' Office: 1991 -522- 592/40172), Administration on Developmental Disabilities. This report (in addition t~ the 1990 Summary Report to Congress) represents the collective efforts of the Administration on Developmental Disabilities, 55 Developmental Disabilities Planning Councils, Wveral University Affiliated Programs, national organizations, and many other individuals to respond to the legislative requirements of the Developmental Disabilities Assistance and Bill of Rights Act,, as amended by P.L. 100-146. This volume summarizes the reports mat were submitted by the Governors of the states and territories. Policy issues and recommendations are made relating to supports to individuals and families, education, employment and income, housing, health, and civil rights. For copies, contact: Administration on Development Disabilities, US Department of Health and Human Services, Washington, DC 20201. 1990 Supported Employment Resource Guide, National Association of Rehabilitation Facilities. This is a comprehensive listing of resources and information available about supported employment. Content includes: 1) training, technical assistance, and research resources (including federally funded projects, Rehabilitation Research and Training Centers, and University Affiliated Programs); 2) media resources (newsletters and information packets, audiovisual and computer programs); 3) bibliographies; and 4) a cross referenced index. Contact: The National Association of Rehabilitation Facilities, P.O. Box 17675, Washington, DC 20041. 1/800/368-3513. The Consumers Guide to long-term Care Insurance, Health Insurance Association of America. This question and answer guide can help to clarify information about health care coverage and long-term care. Most important, a list of questions are provided for the consumer to ask when shopping for and comparing health insurance options. A glossary of terms and a list for additional reading are provided. Contact: Health Insurance Association of America 1001 Pennsylvania Avenue, NW, Washington, DC 20004-2599. The Americans with Disabilities Act: Questions and Answers, U.S. Department. of Justice, Civil Rights Division. The Americans with Disabilities Act guarantees equal opportunity for individuals with disabilities in public accommodations, employment, transportation, State and local government, and ,telecommunication. Everyone needs to be informed and involved so that this landmark legislation can be effectively implemented. Copies are available from the Governor's Planning Council on Developmental Disabilities, 300 Centennial Office Building, 658 Cedar Street, St. Paul, MN 55155. 612/2964018 (voice), 612/296-9962 (PD only). Cottoned from page 1 INFORMATION EXCHANGE agencies. Over the next three years these priority areas will be addressed: Interagency collaboration and coordination in programs for transition from school to work; Emergent issues in supported employment programs; Parent- professional collaboration in the inlegrati~ of individuals with disabilities in education, community living and employment. The project begins in October 1991. A consumer and professional advisory committee will be established to assist in the identification validation, and sharing of information. Inquires should be directed to David R. Johnson at 612/624-1062 or Teri Wallace at' 612/626-7220. Training Offered in Person-Centered Services Human Services Research hand Development Center has scheduled three days of training, "Quality Lives: Pemon Centered Services," at the Registry Hotel, I-494 at 24th Avenue, Bloomington. Thursday, July 11: Person- Centered Organizational Change with Gail Jacob, Executive Director of Options in Community Living. Friday, July 12: Inclusive Community Building with Kathy Bartholomew-Lorimer, Logan Square Project, Chicago and Louisville. Wednesday, July 31: Current Perspectives on Personal Futures Planning with Beth Mount, Developer of Personal Futures Planning. Call Pat Lyon, 612/227-3292. Women's Chemical Dependency Assessment Workshops Scheduled Chrysalis, a center for women, will be holding one-day training sessions regarding the assessment of women with chemical dependency. Gain an awareness of women's inner and outer worlds and ~w those worlds impact women's use of alcohol or other drugs. Dates and locations: July 12, Duluth; August 9, St. Cloud; and September 13, North Mankato. Contact: Lestie Scaramuzzo at Chrysalis ~st, 550 Rice Street St. Paul, MN 55101. 612/'222-2823. Lending Library The following resources, including videotapes (VHS 1/2"), are available on a two-week IOSn basis. The only cost to the borrower is the return postage. Be My Friend, Tourette Syndrome Association, Inc., Minnesota Chapter, (10 minutes}, promotes better underitanc@g of Tourette syndrome, and provides illustrations of typical behaviors associated with this syndrome. Just Families: ". . that's all we really want to be, " Oregon Developmental Disabilities Council (videotape 14 minutes), -ys stories of ordinary families who face the challenge of having a family member with disabilities. This videotape is accompanied by a booklet Families: Meeting Challenges, Promoting Change, which tells the stories of the families who participated in Oregon's first Family Support programs. Self-Advocacy and People with Developmental Disabilities: Teachers Resource Book, accompanied by two videotapes--Speak for Yourself and People First, University of Oregon. This training package covers the origin and philosophy of self-advocacy; procedures for starting new self-advocacy groups; and models for planning and conducting meetings and state conventions. Education Statutes To Reflect "People First" Language The 1991 Minnesota Legislature passed a bill that instructs the revision of statutes to delete each term in column A and to insert the term in column B within the education code: Column A Handicapped children Handicapping conditions Handicapped pupil Nonhandicapped pupil Nonhandicapped children Handicapped student Handicapped child. Children with handicaps Handicapped youth Handicapped individuals Column B Children with a disability Disabling conditions Pupil with a disability Pupil without disability Children. without a disability Pupil with a disability Child with a disability Children without disability Youth with a disability Individuals with a disability "It is extremely important that we not only build respect and dignity toward people with disabilities in our statutes, `but that these" attitudes become second nature within our everyday language." Anne Henry, Legal Advocacy Attorney, (In response to this legislative accomplishment, stated.) ? Bulk Rate U.S. Postage PAI13 Permit No. 171 MINNESOTA STATE PLANNING AGENCY St. Paul, MN Governor's Planning Council' on ., Developmental Disabilities 300 Centennial Office Building 658 Cedar Street, St. Paul, MN 55155 ,, Roger Strand, Editor 612/296-4618 612/296-9962 TOO TIME DATED MATERIAL @iw? .' gj)rec,dedpaper Futurity Governor's Planning Council on Developmental Disabilities. Closing Institutions: Lessons Learned? by Clarence J. Sundram This article contains excerpts from a presentation, given by Clarence J. Sundram at the Young Adult Institute Conference, April 24, 1991, in New York City. Sundrtun is the Commissioner of the New York Commission OIX Quality of Care for People with Mental Disabilities, Protection and Advocacy Agency. A complete copy of his address may be requested t%xn: Governor's Planning Council on Developmental Disabilities, 300 Centennial Office Building, 658 Cedar Street St. Paul, MN 55155. 61~96.401& (Voice), 612/296-9962 WD). Today, I'd like to think aloud with you about closing institutions for persons with mental retardation. What lessons have we, learned and how do they affect the role that each of W play in the development and execution of a policy to close institutions?. Since the dark days of Willowbrook, both New York and the rest of the country have come to learn tit no one really belongs in an institution. We have developed a body of experience that teach that people with all forms, natures, and severity of disabilities can be supported and assisted to live in the community, and they generally benefit from such art option. The lessons have been powerful, the evidence persuasive. A movement which began with a small group of parents, professionals, and advocates challenging the conventional wisdom and practice has become the conventional wisdom and practice. It sounds as if the story should have a happy ending, with a broad Wianee opening the doom of institutions and restoring freedom to their inhabitants. But wait. There are warning signs of trouble ahead. `The familiar tension between eonscie~ and convenient about which David Rothinan It& written, is raising its ugly head. The experiences which form our conscience teach us that many of the same things that we value in our own lives are of value in the lives of people with disabilities: where we choose to live and with who; how we choose to spend our waking *s; the opportunity to form personal relationships with those of our choice: and so on. We have seen these experiences at work in tiy parts of the country--creating personal support systems to enable people to live their lives as they choose. It has not always been easy but we know how to do it and we know that the effort has emichdtie lives of all involved We have also learned that it's not always convenient and it's usually not fast. Today's reform of closing institutions .is also caught in ,the same dichotomy between conscience and convenience, and likewise *overlooking the needs and desires of inhabitants in the msh to execute the emerging public policy. There is an added risk from the growing financial troubles sweeping the state and nation. The unfortunate lesson that fiscal policymakers seem to have learned is to close institutions and close' them quickly; and to look for economies of @e in the Development of the community residences of standard ti and even larger day programs. `Me demands of convenience and efficiency produced a public policy that has resulted in a proliferation of 12-bed residences all over the state, to the virtual exclusion of other residential options. We seem to be approaching. a policy much like Henry Ford's in producing the Model T: August 1991 Anne Henry Honwe'd by Minnesota State Bar Association Anne L. Henry, staff attorney' for the Legal Advocacy Pm@et for Persons with Developmental Disabilities, was nwmtly m~"wi~ the first Bernad p. ~ker Award at the annual meeting of the Minnesota State Bhr Association. She was reoo@ed for her 16 yt%Us of -ice to -S With developmental disabilities ~ their families. Henry was one of @q lead counsel in the Welsch claw action suit, which resulted in the dramatic improvement in emlitions at _"tteatment eentefiand the placement of hundreds of residents into alternative community living arrangements. Henry's Continued on page 2 Inside This Issue... New Cost of Care Rates in RTCS Public Heating on Assistive Technology Paperwork Rebellion "Any color you want, as long as it's black. Continued on page 2 RTCS Care Rates On July 1, 1991, the Minnesota Department of Human Servke$amiouncd NW charges for the coat of care at regional treatment centers and state nursing homes, effective on that date. The new perdiem charge for persons with mental ~ anddtted conditions in each of the eight regional treatment centers will be $271.45. Interim charges are consolidated on a pa diem basis for each fiscal year (July 1 to June 30) by dividing the sum of all anticipated m' by the~j- resident days. Source: Instructional 13ulMin #91-7ZA, Minnesota Department of Human Services. Editor's note: The population of people with mental retardation @ related conditions residing in regional treatment centers has decreased from 1,43S in Jund9S9 to 1,177 in June 1991. STAR Program Publishes Two Free Brochures 1. Assistive Technology and Home modifications for Individuals with disabilities. This brochure provides Stfit@SS and reamm%% fm modi~g homes to allow people with disabilities to live independently, safely, and with dignity. Criteria for these"md&dons ,forcvay part of a typical home, are included. 2. Consumer Products and Individuals with Disabilities. This brochure provides WM helpful hints for consumers with disabilities to think about before purchasing common products on the market. A check list of questions to ask yourself before spending your money is provided as well as " ns regarding P@@*i@, ~- coIilraxs, maintenance, and where to get more information. Contact: STAR Program, 61~96-2771 (Voice), and 612/29M962 (TDD). Henry from~e f primary responsibilities included ensuring that counties found alternative community placements for children living in institutions. As a nxuh of her work, the state institution population of children declined from 245 in 1980 to three in 1991. In addition to her work Ann, served on the Governor's Planning Council a" `" Developmental Disabilities. .This award was nam~for Bernard P. "" Becker, attorney, U.S. Magistrate, and long- time advocate for people who are poor and disadvantaged. The Three Dragons by Marsha Forest and Jack Pearpoint There am three dmgons that prevent inclusion from kppcning. The first dragon is FEAR. It is critical to name the fears and deal W= them. All of us are afraid of the unknown, but instead of telling the fear like 11 is, we hide and blame cithers or say that something is impossible to do. But now we know that integration is possible. The data is in. The children will do just that if we don't let our adult fears get in the way of progress. The second dragon k CONTROL. As professionals we have to give up control and share power with those who have been in trouble. The f- step is to invite those who have been left out to join us at the table. By asking the "problems" to be part of the solution, we are entering into powerful partnerships for change. We empower both ourselves and our new partner. Everyone wins in this Scenario. The third dragon ii CHANGE. Change, though inevitable, scares us all. We fear it. We are always more comfortable with the status quo. We must make the change we want explicit, then face the fear, and give up the old controls that stop us from moving =" In-service education and staff development must deal with the three dragons before building models of curriculum. Creative curriculum will flow when teachem leap over the three dragons and know that their jobs and futures are secure. Teachers need to fully understand WHY change is being made. If ,they UNDERSTAND, most will buy into the process with enthusiasm. Once the, three dragons are out in the open field, we can laugh and cry together over our fears. Then and only then, can we start to deal with teaching all kids to read, write, and be literate citizens hi today's quickly changing and complex world. Source: hrclusfon News (Fall 1991), p." 3. /hc/usion Nebtgs is an occasional publication, available (with a voluntary donation) from: Center. for, lntegraf~ Education & Community, 24 Theme Crasc., Toronto, Ontario, Canada M6H 2S. 416/658-5363 Closing from page 1 "One size fits all" is a poor policy for selling pantyhose. Does it work any better in determining the housing needs of people with mental retardation? What ever happened to individualization? To normalization?" What is it about being mentally retarded that makes adults want to live in groups of 12? How do clinical professionals jus@~ such recommendations? All too often policy decisions are made without a full appreciation that closing institutions is not an end in itself. The streets of every city in America are testimony to the barrenness of that policy. Closing institutions is good policy only, if it opens the door to real possibilities of a normal life, with genuine choices and opportunities. It must offer retire thamachance to ride the same van to be segregated with different people and different pks. In a very real way, the challenge and opportunity of closing institutions forces us to confront the question: for whose benefit are we doing this? If we believe we are acting in the interests of the residents of the institution, don't reason and common sense suggest that we he solicitous of their needs and preferences and plan the development of services around the individual? How many people receiving 30,40, or 50 thousand dollars per year would choose to buy a bed in an In teamediate Care Facility and live with 10 or 12 other adults and a staff they have no voice@ choosing? If the convenience of the moment allows us to discard the accumulated wisdom which led to laws requiring individualization, choice, normalization, will act in haste and perhaps meet the deadlines of the moment but spend h lifetimes of our clients repenting what we have done. Events August 10, 1991 Parent Case Management Summer T raining Session will be held at the St. Cloud Holiday Inn, St. Cloud, MN. `Ik! workshop is designed to enable attendees to participate m~ fully in the case management of services for their children, Contact Marijo McBride, Institute on Community Integration, 6 Pattee Hall, University of Minnesota, 150 Pillsbury Drive SE, Minneapolis, MN 55455. 612/6244848. September 13, 1991 A conference on mental health issues of adults with brain injury and the impact on their families will be hosted by Courage Center, 3915 Golden Valley Road, Golden Valley. Sponsored by the Minnesota Head Injury Association and the Traumatic Brain Injury Program, &d the Minnesota Department of' .Human Services, this conference is for professionals and others who work with adults with brain injury and thf3k CWC@?lS. Call: 612/520-0210. September 20-22, 1991 The National Down Syndrome Congress will hold its 19th Annual Convention, "Continue the Revolution," at the Boston Park Plaza Hotel & Towers, Boston, Massachusetts. Contact NDSC, 1800 DempstWStreeL Park Ridge, IL 60068- 1146. Toll-free: 11'800/232-NDSC September 25-26, 1991 The Minnesota SILS providers, Inc., providing a forum for Semi-Independent Living Service consumers, providers, and interested others, will hold a conference "Maximizing Potential" at the Holiday Inn in St. Cloud. Contact: Laura Lund at 612/870-0383. September 30-October 1, 1991 "Inclusive Edtiation: Full Membership" workshop will be sponsored by Hopkins School District and Minneapolis, Children's Medical Center at the Eisenhower Community Center, 1001 West Highway 7, Hopkins. Featured speakers: Marsha Fomstand Jack P-int. Call: Gay Rosenthal, 612/933- 9236; or Tom Koch; 612/'933-9270. Resources Together Successfully: Creating Recreational and Educational Programs that Integrate People with and without Disabilities, John E. Rynders & Stuart J. Schleien, published by ARC United States, National Office of 4-H and Youth Development and the University of Minnesota(1991). This iuuid%ok is filled with practical, step-by-step directions for creating activities that will virtually assure the success of an integrated recreation or education program. With the goal of promoting inclusive communities, this guide explains not only the "why" but most importantly, the "how." Gtidm are provided for couraging positive peer interaction, and how to avoid common problems or mistakes. A variety of activity plans and adaptive techniques can be used to meet individual needs and interests. Stories about several individuals and profiles of successful programs illustrate ,only some of the possibilities open to the imagination. A list of additional resources are provided in an appendix. Available for $12.50, payable to: Association for Retarded "Citizens of the United States, Publications Department P.O. Box 1047, Arlington, TX 76004. Or, a copy maybe borrowed from the Lending !Library, as described on the back page of this newsletter. Resources continued' Quality Assurance Resources: Instrumental, Organizations, and Publications, ARC United S= (1989). This guide lists describe a number of resources and methods from assessing and quality programs and services for persons with developmental disabilities. "Quality" defined as rnukidimemtional: 1) hum the individual's satisfaction viewpoint 2)* the satisfaction of other people who are closest to the person receiving services, such as friends and family members 3) measures of outcomes, such as productivity, integiat.kin, Orin mkpdeqm; 4) Ndevance and functionality of individual plans; S) seMce Coordinatioqkase management 6) citizen monitoring; and 7) Iicensing md certif~ation. "Orgmdzational commitment and ilCtiOllS tOWd C@@ XtlUdlY kd to definition and redefinition of what constitutes quality," the authors state. Cost $4$30, payable to ARC United States, N@omd Headquarters, P.o. Box 1047, Arlington, Texas 76004. 817m0-0204 Augmentative Communication Publications--The Am&can Suekch- Language Hearing Association h&pmduwi a number of helpful gyides for assisting people who do hot speak or writk, but can communicate by using such devices ax communication boards, switches, symbols, _ computers, and manual sign langyage. For example, a series of five booklets provick ideas and rcsoumes Book l-for General Public; Book 2-for Educators; Book3-for Administrators; Book 4-fro Medical Community, and Book 5--for Consumers; Anotheipublication Implementation Strategies provides over 70 exemplary examples for implementing acompmhensive service delivery program. Condt American Spxch-L+mguage Hearing Association 10801 Rockville Pike, `Rockville, MD 20852. 301/897-5700. - Lending Library Tha follotig reaoumes arc o vaitable on loam publications for ihrce wccka;-vidaotapaa (VIM 1/2" cassette) "for two Wceka. `Ill& Onty cost to the borrower is the return poatsge. Another Peqfect Day (videotape, 5 minutes), a parody on the field ofaemices, can provide a humorous start to a serious discussion. Znterview with Lou Brown, (videotape, 47 minutes), April 1987, pmmotea supported employmixlt Of.pebple with severe disabilities. "T@really generati ideas atour training session: said one DAC Director. Partnership for Quality Services: Volunteer Monitor's Handbook (publication and vide@ape,24 mhmtes), Am Minnesota, a project that illustrates how volun~ and professions tan Wolk together to aseunt thatpeople lead valued lives in the community. Together Successfully: ,CreUti?Ig Recreational and, Educational Programs that Integrate People with and without DisabiZit&s. (F%blicetion). !kedescriptionon page 3. Public Hearings on Assistive, Technology Scheduled in August - TIE STAR program is holding public hearings to determine, "What are the ` bariiem preventing the @ of assistive technologies by, Minnesotans with disabilities?n Information is being $ollected for pmsentations:to Congress regarding the reauthorization of the Technology-Related Assistance for Individuals with Disabilitit+s Act ahd for continued funding in Minnesota. Call your local Hearings Coordinator to register, fti,out more about the meeting, and indicate if an interpreter or other accommodations are needed. The dates, towns, andeodim@m are: August 6: OwatonW Dave Williams, 507/451-5897 August 8: St. Paul, Lin& Koerner,612/2%2771' August 12: ~Uth, Randy Vo@ 218/723-3809 Atigust 13: Hibbing, Bobbie Bouvier, ~18/262-6675 August 14: Thief RiverFalIs, PclerLavalier, 218/6814949 August 15: Moorhead, Marie Swanson,218f136-22% August 20: S~"Cloud, Glen Hoppe, 612/2554913 August 22: Worthington, Linda Ebner, 507/372-2983, or 507/831-4854 Additiontd written testimony may be submitted by August 30, 1991, ,to: Gotremor's Advisory Council on Technology for People with Disabilities, STAR program, 300 Centennial Building, 658 Cedar Street, St. Paul, MN 55155. 612/296-2771 Why No Paperwork Rebellion? EVCry CiMII@ I ge&I ask thisquestkh. Otte of the grCakW~ in my life has been the slow realization that we often prefer paperwork to working directly with consumers. I see no other reason. If we enjoyed the activities that paperwork keeps us from, we would be far mow aseve and demanding in bringing the paperwork boondoggle to a halt, and instituting other mechanisms to gamy out legitimate monitoring and review functions. Source,: John Shea, ,Where's the Jsllo? The Continuing Saga of One Home's Experience wfth the ICF/MR (Smsll) Program (1990). Avaitable from Alten, Shea & Aesoeiates, 1040 Main Street Suite 208, Napa, CA 94559. 707/258-1326 Bulk Rate arLu@y DEPARTMENT OF ADMiNISIRATtON Governor's Planning Council on Developmental .Disabilities 300 Centennial Office 8uilding 658 Cedar Street, St. Paul, MN 55155 "Wger Strand, Editor 612/29Rul18 612/29S4M2 Tlttl ,.. U.S. Postage PAIO Permit No. 171 St. Paul, MN TIME DATED MATERIAL %S%' ..n ?-'? @ recycledpapel I Futwisy Governor's Planning Council on Developmental Disabilities Illinois Study Concludes, `Supported Employment Benefits All' Unlike-o~er researeh about supported employment, a three-year longitudinal study coriducted by Corporate Alternatives, Inc.@ I~inois measured individual giowth and development of people working in supported employment settings and compared them with ot@ers who remained in traditional day programs. The researched concluded that this study "yields indisputable evidence that supported employment &nefits all parties involved." The three-year study, funded by the Illinois Department of Rehabilitation S&vices, had two components--longitudinal and rnatch@psir comparison. The longitudinal component followed 54 movers (persons in supported employment) over three years to determine level of adaptive behavior, challenging behavior, vocational skills, socialization skills, degree of integration in @ workplace, and wages earned. For the matched pair comparison, 29 movers wore matched with 29 stayers (persons who remaihed in traditional day programming), and noted the comparisons between the two groups in the siime arw listed above. In addition, satisfaction with" supported employment was studied in interviews with the people working in supporttxl employment employers, family members, ~d job coaches. The authors of the report concluded: (This study) has shown that people with disabilities have greater opportunities for integration, their average earnings have tripled, SOLI they have expres~d 100 pextentjob satisfaction once-moved to supported employment. Everyone of the employers polled said based on this experie~ce "they would hire mcire persons with disabilities." Families are pleased witb their relatives' progress and job coaches are almost unanimous in expressing their satisfaction with their jobs despite Jow wages. Most importantly, people with disabilities themselves offer a glowing endorsement of the supprted employment p%gram. The study substantiated observations made by the National Conference of State Legislatures' Report of the Task Force on Developmental Disabilities, that supported employment "is a cost effective' alternative . . . and the b@efits of supported employment are gieater because @nfulIy employed people pay taxes, depend less on public programs , and contribute money to the state economy. Moreover, people who in the past were segregated can enjoy the same community benefitS as do people without disabilities." For f~tier information about the Three-Year Longitudinal Study Of Supported Employment in Illinois, contact: CAthy Huffpan, Research Manager, Corporate Altemktives, Inc., 625 South CoIlege Stre% Springfield, IL 62704. 217/544-5687 September 1991 Justice's Back Door by Robari R. Williams Twenty degrees on a Monday morning. The marbled inscription read "Equal Justice Under the Law." But the steep white stairs to Lady Justice's front doorstep told me differently. A young black guiud CSIW UP sndsaid me and my kind could get in by going around bsek. The wry smile on my face lost on him, I silently turned myself around and headed up the windswept eonerete incline until ieame eye-to+ye with theautomatic door. one sign on it read "Handicapped OIdy." The other sign said "Door not in Operation. EntEr at Front Door Only." Sourea: ha Struggling Voka: The Selsctsd Poamsof%batt Wtiliams(1989), p. 84. Robart R. Williams is a Washington, D.C. peat and disability rights activist. ~ Inside fiis Issue... Requests for proposals issued in areas of technology, respite care, crisis rwserfes, and carefjiver support. Tele~hone Assistance Plan altered by Minnesota Legislature. Crisis Nursery, Respite Care, and Caregiver Su~port Grants The Minnesota Department of Human Services (DHS) has issued three requests for proposals: 1. Crisis Nurseries-The Children's Serviees Division is soliciting proposals to develop ~o new crisis nurs6ry programs, one in the Twin Cities Metro@itan Area and the other in Greater Minnesota. A.total of $85,tXXl will be avaiiable each year for the two programs over a thee-year period. An additional $5,000 per year is available for the development of a supportive parent-~ to-parent volunteer program, Proposals must be submitted no Iater than October 15, 1991. Contact: Becky Montgomery, Chiidren's Services Division, 612/297-3634. 2. Respite Care-The Long Term Care Management Division is soliciting proposals to develop fosler respite care for children with disabilities. A total of $200,000 is. available to existing programs,. and for the development of atkast two new projW~. proposals are due October 15, 1991. Direct requests for I@ from Melody Nagy, 612/297-1698. For more inform. ation, call Nancy Smith, 612/2%-5892: 3. Respite Care and Caregiver ~ Support-The Long Term Care Management Division is requesting proposals to establish up to 32 projects statewide to benefit informal caregivers. The total amount available for fis@ year 1992 is $240,000, and for fiscal year 1992- $640.000. Projects must serve at a ~ "minimum caregivers providing care to persons over age 63. and to other persons as resources allow. Contacc Nancy Smith, 612/296-5892. The adcbess for the Department of Human Services is 444 Lafayette Road, St. Paul; m 55155. -. Events September 13, 1991 "Putting the Pieces Together" is a conference that will' explore mental healtli~ issues of adults with brain injuries and the impact on their families. Lecation: Courage Center. Contact: Ann C. `Trelow, Courage Center, 3915 Golden Valley Road, Golden Wdley,,MN 55422. 612/520-0210. September 149 1991 Race Walk Cla&ic for Autism, Fun Walk, and Junior Race `Walk, will be sponsored by the Twin Cities Society for Children and Adults with Autism, Inc. at Phalen Park, St. Paul. If you wish ,@ volunteer, cidl: Sara Struve, WalkSport America, 612/291-7138. Contact: Sue Minor, 612/5354273. September 20-31, 1991 Arc Minnesota will hold its Annual Cmference, "Families: B@ding Blocks for the Community," at the Kahler Hotel in Rochester. Susan Stephani will keynote, "Living Life on Purpose." A.M. "Sandy" Keith, Chief Justice of the Sate Supreme Court, will present at the Conference Banquet. Contact: Arc Minnesota, 3225 Lyndale Avenue South, Minneapolis, MN 55404. 612/827 - 5641, or 1/800/582-5256, tolI-free. September 21, 1991 The Epilepsy League of Lake Superior will hold `a conference, "Living with Epilepsy," at St. Lhke's Hospital, 915 East 1st Street, Duluth. Contact: Epilepsy League of Lake Superior, 218/722-4526, or 1/800/637-1542 (if from AC 715 or 218). September 25-26, 1991 7 "Maximizing Potential" is the theme of the Minnesota SILS Conference, sponsored by Minnesota SILS (Semi-Independent Living Services) Providers, and the Minnesota Governor's Planning Council on D&eiopmentalDisabiIities, in eoopation with the North Central Technical Colleges. The conference will be held at the Holiday Inn, St. Cloud. Coritact: North Central Technical College; 218f194-3726, or 1/800/247-6836, toll-free. October 5-6, 1991 "We the Parents. . .Working as Agents for Change--Celebrating the Strenths of Our Families" is a statewide conference for parents of children with special needs hosted by PACER Center. R will be held at Sheraton Park Place, Minne@olis. Keynote: Anne KonnalIen, University of Wisconsin--Madison.. Contacc Casey Gorkqor Heather Lyle at,PACER 612/827-2966." October 7-8, 1991 Minnesota Association for Guardianship and Conservatorship (MAGIC), will host "Standards Make the Difference" Conference at the St. Paul Hotel, St. Paul. Keynote: Gerald Provencal, Director, Macomb-Oakland Regionrd Center, Michigan. Contact: Lorna Wiens, North Cen~l Technical College, Airport Road, Staples, MN 56479. 218/894-3726, or 1/800/247-6836, toll-free. October 15-18, 1991 North American "Out-of Home Cw Cordeience: Challeriging the New ` Realities,'] will be hosted by the Child Welfare League of Am&c~Mid-West Region in St. Luuis Missouri. Contact Child Welfare League-of America, 440 First Street, NJV, Suite 310, Washington, DC 20001-2085. 202/638-2952. October 17-19; 1991 Closing the Gap Conferen~:' Microcomputer Technology in Specia.Education and Rehabilitation will be held at Radisson South Hotel a~ Hotel Sofitel, Bloomington. ContAct: Closing the Gap, 2000 West 98th Street, Minneapolis, MN 55431. 612/881 -7~11, or 1/806/222-7907. Resources Directory of Funding Resourxes for Assistl>e Technology in Mfnnesota, `STAR program, 1991. This publication contains information about agencies and organizations in Minnesota that fund technology that can be used by persons with disabilities. By definition, an assistive technology device is any piece of equipment that is used to increase, maintain, or improve functional capabilities. `I'hedirectory format helps to compare programs and tells how to get in touch with a number of resources.. The information was compiled ~om returned questicmn&es. Available from: STAR Programy 300 Centennial C)ffice Building, 658 Cedar Street, St. Paul, MN 55155. ,612/297-. 1552 (voice), 612/2%-9%2 (TDD) Iticlusihn, Exp&tations Unlimited, Inc., 1991. This is a catalog of writings and recordings. thal reflect many new exp&ience$ and beliefs about the `importance of including all ch'ildren in school, and building inclusive communities,. The recordings and printed materials can be used as `tools for learners, teachers, and others for gaining greater insights about the human potential. Contact: Expectations' Unlimited, Inc. P.O. Box 655, Niwot, CO 80544. 303/652-2727. -, From Behind the Piano: the Building of Judith, Snow's Unique Circle of Friendsj. Jack Pearpoint, Inclusion Press, 1990. This is a book about Judith Snow, Marsha Forest, Jack PearPoint, and their friends. It is also the story of the gqnmis of the "J&hua Com-mittee," ,Jhat "knocked down the walls," and supported each memlxx as true, frie@ do. According to Robert Perske, "This is a grabber . . . the best story yet." Price: $10.@ payable to Expectations Unlimited, Inc., P.O." Box 655, Niwot, CO 80544. 303/652- 2727. Adult Protective Services: Practice Guide, Minnesota Department of Human Services, 1991. Designed for practitioners in adult protection, this manual desenbes services in Minnesota as prescribed by law and regt!lation, human rights,and ethieal practices. Guidelines areprovided regarding people with speeial needs, such as: abuse and neglect of people wlioam elderly, or have a chronic illness or disability; self-neglect; victims of sexual assaul~ and pmple who are dying. Other sections cover family care@king, cultural differences, and reaching. a higher stan&rd of practice. Depwtment of Human Sefiices, 444 55155. Contact: Adult Protection, Minnesota Lafayette Road, St. Paul, Minnesota Technolc)gy Announced Grants The STAR Program has issued fbur requests for proposals: `1. Community assistive technology resomes to cmite new and expand exi*g programs, Total funds available: $1 OO,CKIO, with an average grant betw&n $5,000 and $25,000. 2. Assistive technology mobile van delivery p@ms to impmve deviees and serviccs Level of funding: $1 OQOOO. 3. R eseareh and writing of public education broehuies to increase public awarenes s of the role of assistive technology devices and seMees in relation to disability iuitl lifespan issw% Level of funding: $10,000. 4. Training curriculum, coordination and delivery to expahd heal capacity through in- service haining for professionals and employers. Level of funding: ,$14,500. Deadlipes: October 11, 1991, for, numbers 1 and 2; and' September 23,. 1991, for numbers 3 and 4, above. -. Contaeb Rachel Wobschall, STAR Program, Department of Administration, 300 Centennial Offii .Building, 658 Cedar Street, St. Paul, MN 55155. 612/297-1552 (Voice); 6124296-9962 TDD). Bruininks Named College Dean Robert H. Bmininks, professor of educaticxial psychology and director of the Institute on Community Integration at the University of Minnesoa has bcm appointed deaqof the University's College of Education effeetiveSeptember 16,1991. Bruininks has served on the faculty since 1968. In the mid-1970s, Bruininks served as executive direetor of the Governor's Planning Council on i)evelopmental Disabilities. From 1981 to 1984, he was a Kellogg Foundation National Leadership Fellow, and just recently complel.ed his term as president of the Arn&ican Association on Mental Rekdation. In"1985, under Bruininks leadership, the Instituk"on Community Integration was established as a University AffXra.ed Program, fundedby the Administration on Developmental Disabil- ities. Congratulations Dr. Bmininks! `ary The following resources are available on 10W: publications for three weeks; videotapes (VHS 1/2" cassette) for two we&s. The only cost to the bomower is the return postage. Respite Care is for Families: A Guide to Program Development,* CSR Inc., Washington, DC. This manual suggests how to design respite care services that are responsive to parent and family need. Respite Care: A Guide for Parents,* CSR Inc. Washington, DC. This booklet provides parents with information about the benefits of respite care, the ways in which respite care services am organized and fu~ and strategies for finding aid using ~spite c"= services in their communities. Letting Go: Views on Integration (videotape, 19 minutes). Parents tell of the difficulties and risks involved as their children with disabilities experience the "real world." My UncZe Joe (videotape, 15 minutes). A nephew's story about his uncle who is learning how to live independently after years of being institutionalized. *The publications about respite care are available for $4.00 each, payable to CSR, Inc., Respite, Suite 600, 1400 Eye StreeL NW, Washington, DC 20005. 202/842-7600. Legislature Makes Chan es in ? Telephone Assistance Pan Starting July 1, 1991, as a result of changes made by the Minnesota Legislature, new procedures for ap@ication and revised income eligibility requirements will become effective for the Telephone Assistmice Plan (TAP). TAP provides assistance through a discount on the cost of local telephone service to persons who are at least 65 years of age, or have a disability, and who meet the income guidelines. Minnesota law requires that to be income eligible for TAP, a household's ye~ly gross income must not exceed 150 percent of the federal poverty guidelines. The following new income limits were previously announced in the February 20, 1991, Federal Register: $9,930 Single person. $13420 Married or single with child under 18 who lives with the subscriber. $3,390 Add for each additional minor child who lives with the subscriber. The subscriber or spouse must first meet the elderly or disabled criterion. If they meet this criterion, they must then be within TAP income limits or receive public assistance. The receipt of public assistance atone does not qualify a person for TAP. The Department of Human Services (DHS) will now determine eligibility for the TAP credit prior to receipt of the credit. Applications are available at county human service agencies. Applicants must now send the completed applic@on dircrxly to DHS rather than to their telephone company. Questions should be directed to: `Me Telephone Assistance Plan, Department of Human Services, 444 Lafayette Road, St. Paul, MN 55155-3859. Metro area call: 612/296-2765. Ton' free: 1/800/657-3838. ~utily Bulk Rate U.S. Postage PAID Permit No. 171 DEPARTMENT OF ADMINISTRATION St. Paul, MN Governor's Planning Council on Developmental Disabilities 300 Centennial Office Building 658 Cedar Streat, St. Paul, MN 55155 Roger Strand,, Editor 612/296-4618 612/~"-996Z TDll TIME DATED MATERIAL rg$rec,ckd,aper FLltUri'"-- October, 1991 d Governor's Planning Council on Developmental Disabilities `HOME,' Where People Find a Sense of Place, Control and Ownership: Developing.an Agenda for Change by John O'Brien `The following thoughts are summarized from a paper written by John O'Brien, Responsive Systems Associates, entitled "Down Stairs That Are Never Your Own: Supporting People with Developmental Disabilities in Their M Homes" (1991). A complete copy of the text maybe mqueated by catling 612$2964018, voice or 612/296-9962 TDD. Most adults with developmental disabilities eat tie bread of others and know only the way that goes up and down stairs that, are never thd.ir own. Either they live in their parent's house or they occupy a bed in a place set up to offer supervision and treatment. Mostly, opportunities to hold one's own Iease requires the ability to sueeeed with minimal assistance. Problems usually send a person' in difficulty dow"n the steps of the service continuum to a bed in a more restrictive facility. Review of existing residential serviees reveals substantial limitations in the current standard, such as: rising costs; recruiting and retraining capable staff, and the energy it takes to comply wit$ increasingly complex regulations. Structured `"programs may increase people's skills,, but very few paple' graduate to independence, Wd even fewer achieve full community membership. Years of hard work have produced many settings, that may M home-like, but most really seem much more like small facilities than like @ople's homes. A growing number ot @ople actively question the assumption implicit in the current standard. They notieethat most debate ~d development continues to be foeu&d on facilities. "~ey ask why a nekd for personal assis~ce should bar people with severe disabilities. fmm enjoying the @efits of life in their own homes. The new standrtid resonates with most @ople's desire for a home ,of their own, and there are an increasing ,riumber of stories a~ut positive changes that resttlt when people with severe disabilities have their own place. These experiences suggest an, appealing alternative to the increasingly apparent limitations of ftiility based services. The vision of people with severe disabilities living with support in their own homes contradicts most curmrft policy Md praetiee. A new agenda can be shaped by considering thrik dimensions of what it means for people to have their own homes: 1. they will experience a sense of place; 2. they or their agent will control their home and the supporune-eessary to live there; and 3. through ownership, they will occupy a valued role. with greater opportunities to build c@ity ok cnxiit ratings. SENSE OF PLACE: people with a sense of place comfo~bly inhabit and personalize "their home. They choose the ways they want to invest iheir time, sk~ls, energy, `ad money in the routines of homemaking. They have the sense of personal security that cotis from legally assured tenure. Many current practices deprive people with severe disabilities of a sense `of place, such as: people's continued residence de@tds on compliance with the service providers' house rules and their cotnplianee with requirement set by professional teanis and "you W~zl"CO??2& ~0 know how bitter as salt and stone is the bread of others, how hurd the way that goes. up and down stairs tluzt are never your own. " (Dante, Paradise, CANTO xvii; 58-60). New Director Appointed for Institute on Community Integration Dr. Scott-R. McConnell, Associate Professor of Educational Psychology at the University of Mirmeso@ has been appointed dhector.of the Institute on Community Integration, a University Affdiated Program. McConnell replaces Robert Bruininks, who has been named dean of the University's College of Education. McConnell has extensive experience in theateas of researc h and'practice in early ifiiervention, social interaction skills training, and school psychology. ~nside `This Issue... University awarded. transition grant. IBM computer discount program. ExpandedSSl eligibility for children. University of Minnesota Awarded National Transition Grant The Institute on Community Integration (UAP) at the University of Minneso@ has been awarded a $175,000 grant to conckt a h-y= tl@Oltd study on the transition of individuals with severe disabilities leaving school. llte grant is provided by the National Institute on Disability and Rehab~itation Research, U.S. Department of E@cation. The study will be conducted in collaboration wi?h the University of Illinois at Ur~-Champaign and the University of Vermont. l%e study will stirvey and evaluate 5 to 6 StStCS to assess post-school outcomes; collect case studies to identify, documen~ and analyze information on exemplary transition policies, administrative practices, and funding strategies; develop a model policy and decision-making framework for state to use in fonntdating exemplary transition policies and practices; and disseminate information about the study. CoWt: David R. Johnson, Institute on Community Integration, 109 Pattee Hall, 150 Pillsbury Drive, SE, Minn&polis, MN 55455.61216244848. ARC Minnesota Appoints New Executive Director Barbara W. Kaufmari has been hired to fdl the agency's Executive Dinxtor position, effective September 1, 1991. Ms. Kaufman has twenty-three years of experi~nce in managernen~ advocacy, and tirnunity organkuion in ~e field of human services in both the private and public sectors. Most recently, she was the Assistant Commiss- ioner for Mental Hahh Services with the Minnesota Department of Human Stxvices. The mission of ARC is to ensure the fult participation of people with developmental disabilities in their communities by promoting systems of support and self- suffiiicncy for individuals and their families and by advocating for their rights. ARC has over 7,000 members in 54 chapters through- out Minnesoh Contacc Cindy Yeas, presiden~ 612/827-5642, or 1-800/582- 5256, toll-free. EVENTS: October 10-11, 1991 "Creative Options for People with the Most Severe Disabilities" is the third ~ `annual training symposium sponsored by Minnesota Habilitation Coalition, Region X Developmental Service Providers, Albert Lea Techni@ College, and the Governor's Planning Council on DevelopmeM.al Disabilities. Place: Sheraton Inn Airport, Bloomington. Keynote address: Bernard Carabello, Self- Advocacy Association of New York State. Other presenters include: Lou Brown, Ricardo Cema, Chris Heimerl, Dana Henning, Wade Hitzing, Joel Jacobs, Frderick Kaeser, Herb Loveit, and Karen Green. Contacc Extended Cam@Is, 2200 T&h Drive, Albert Lea, MN 56007. 507/373-333-2584, or 1-800/333- 2584, toll-free. October 17-19, 1991 Closing the Gap Conference: Microcomputer Technology in Special Education and Rehabilitation will be held at Radisson South Hotel and Hotel Sofitel, Bloomington. Contacc Closing the Gap, 2000 West 98th Street, Minneapolis, Mn 55431. 612/881 -7811~or 1/800-222-7907. October 19, 1991 (7 to 10 pm.) " Juke Box, Saturday Nig@, a Metro-Wide dance will feature the KDWB party Music Machine md door prizes at the Richfield Community Center, 7000 Nicoliet Avenue South, Richfield, MN. Proceeds will benefit programs used by persons with development disabilities who are living independently in the community. Sponsor: TRAIL (Transportation Resource to ,4id `Indep&dent Living). Fee: $5.00. Contact: Elaine Becker at 612/835-4736, or Nancy Booker at 612/835-1760. October 24, 1991 (11 am. to 4 pm.) ~ 7 The Sixth Annual Job Suc&ss Fair will be held at the Bloomington National Guard" Armory, 3000 West 98th Street, Bloomington, MN. This is an opportunity for matching employers and people with disabilities. Call: 612/887- 9604, ext 409 (voice), or 612/887-9677 (TDD). October 25, 1991 The Special Education Law Conference will be hkld at the Thunderbird Motel and Convention Center, Bloomington. Topics include global issues, access to neighborhood schools, attorney fees, extended school year, and the Americans with Disabilities Act. Contact: Educational Law Specialists, Inc. P.O. Box 8037, St. Paul, MN 5510g. 612/633-2109. November 1-2, 1991 Family Unity Policy Forum is a retreat to develop family support policy in the state of Minnesota. It will be held at the Howard Johnson Hotel and Conference Center, 1204 West County Road E, @den Hills. Contact: Jacki McCormack, Arc Ramsey, 425 Etna Street, suite 35, St, Paul, MN 55106. 612/778-1414. November 6, 1991 (9 am. to 4 pm.) "Alternative Methods to Providing Case Management Services" is a meeting sponsored by the Association of Minnesota Counties, the Governor's Planning Council on Developmental Disabilities, and the Department of Human Services. The me&ing will be held at the Holiday Inn, Shoreview. New legislation allows for alternative methods of providing case management services to persons with ~ men@ retardation and related conditions. For more information, contact the . Governor's Planning Council on Developmental Disabilities, or call Ron Kaliszewski ti 612/297-3207. Courage Centq and Hazelden will hold a conference on chemical use by pmple with physical disabilities, "Bridging the Gap: Identification and Therapeutic. Approaches." Location: Courage Center, 3915. Golden Valley Road, Golden Valley, MN. Call: Ann Strelow, 612/520-0210. RESOURCES AN MITROJWCTfON TO THE wHOLE COMMtJNITY CATALOG, Comrnunitas, Inc., under sponsorship of the Connecticut Developmcintal Disabilities Council (1991). This publication provides a simple of what to expect next Spring, 1992, when the first edition of The Whole Community Catalog is scheduled for publication. This resource will follow the tradition established by Stewart Brand in the la~, sixties, when the idea of the Who/e Earth catalog was born. Cornmunitas has an international mission to stwe ideas, @sibilities, and resources concerning the full inclusion ~f children and adults With disabilities into the community life. This introductory edition, published free of charge, contains a feature @cie by John Mc,Knight. "John Deere and the Bereavement Counselor." Other content covers re-visioning: people, the community, ourselves, and our collective responsibilities. Othet' catalogs and networks are listed. Detds are provided for ordering The Who/e Community Catalog. Contact: The Whole Community Catalog, c/o Communitas, Inc., 185 Pine Street (W02), Manchester, Connecticut 06045. SPECIAL NEEDS, SPECIAL SOLUTIONS: jfuw to get Quality Care for a Child wjth Specjal Health- Needs: A Gujde to Health Servjces and How to Pay fOr ~~el?l, Georgianna Larson &Judith A. Kahn, Lifeline Press, 1991. This guide provides fundamental information rieeded by paren~"to obtain quality health care services for their children. Specifically, this book shows how to: 1. work with health care teams, 2. develop asserti~eness skills, 3. explore public payfient programs and utilize private health insuranoe options, 4. deal with stress and emotions, 5. handle issues/disagr*ments with. health plans, 6. interpret terms used by health providers andinsurers, and .7: get help from books, national organizations and agencies.. price: $7.95. Contact: Lifeline Press, 2500 University Avenue West, St.' Paul, M~' 55114. 612/659-9114. (A copy may also be borrowed from the Lending Library, dehls `on fie last page). " Introduction to Autism Classes The Twin Cities Society for Children and Adults with Autism, .Inc. will be holding i~ Introduction to Autisin ctass at their office four time this fall. The three-h&r class starts at 6:30 pm and will be offered on Oct@er 22 and 30, as well as Novemkr 12 and 19. Fee $20.00. contacc TCSAC~ 253 East Fowlh Street, St. Paiili MN. Call Nancy Kobilka at 612/228-9074, or Bill Funario at 612/439-6247. Parent Classes on Cleft Palate The Minnesota Department of Health "wiil hold five, free informational meetings for pzuents on how to help teach their children with cleft palate to develop good speech and language. Different topics will be covered each sc+sion. Classes are scheduled for Mondays October 14,21 and November 4, 11, 18, 1991 beginning at 7:00 pm. Location: Room L-1OO (basement) at United/St. Paul Children's Hospital at 345 Smith Avenue North, St. Paul, MN. contact: Donna Medin, Speech Pathologist at 612/623-5174 to register. IBM computer Disc~unt Program. Offered at Courage" ,Centq People wi~ disabilities may purchase selectcxi IBM personal computing products at a 30 to 50 percent discount and receive one- on-one asshtance before and after the sale. The Computer Discount Program is a joint program with IBM and Courage center at Golden Valley. The purpose is to help pple gain access to computers for rehabilitative and tkrtipeutic needs. Courage Center helps people decide what type of computer or adqptive equipment is needed, then they will provide assistance in odairtg, system testing,, equipment delivery, initial training, and telephone technical support. Call: 1-800/426.-2133 (USA-Voi%), or. 1-800/284-9482 (USA-TDD). Write: IBM Nationrd Support Center for Persons with Disabilities, P.0~ Box 2150, Atlanta; GA 30301-2150. Su reme Court Expands r SS E~igibility fO~ Children The number of children with disabilities who may qualify for receiving additional income from the Supplemental Secuiity Income (SS1) has been expanded by a ruling from the Supreme Cow. The Court ruled that in deciding whether a child is disabled, Social Security must consider the ability of the child to do "age appropriate activities." Being eligible for SS1 means monthly cash payments, and po~ible eligibility to Medicaid for help with medical, dental, and hospital bilks. The important message is for parents to contact Social Security at a new toll-free number to -"if their child qualitles for SS1 payments: 1-800/772-1213. Parents Wanted for Focus Groups The Institute on Community Integration, University of Minnesota, is conducting focus groups on self-determination.. It is seeting parents of student s(ages 15-18) with moderate-severe disabilities. Each participant will be paid $10. Call Denise Murnma at 612/550-7w. Leave your name, phone and best times for her to return your cdl. Lending Library The following resources are available on loan: publications for three weeks; videotapes (VI-IS 1/2" Casaem?) for two weeks. The Onty cost to the borrower is the return postage. The Parent Training Guide to Recreation, National Parent Network on Disabilities (1991]. (packet publication and videotape). Developed at the University of North Carolina at Chapel Hill, this is a complete fzaining p=ket for use with parents in a planned training session. It includes the videotape, "Can Molly Come Out and Play?" Special Needs8 Special Solutions: How to, Get Quality Care for a Child with Special Health Needs. `" (Publication). Seepage three fordeseriptitm. From Behind the Piano: The Building of Judith Snow's Unique Circle of Friends, Jack Pearpoint, Inclusion Press, 1990. (Publication). This true story of iiiendship building highlighB the importance of iiMmJependenc6 in Society. It's About Learning: A Student Centered Approach to Adult Learning, Marsha Forest with Bruce Kappel, Frontier College, 1988. (publicxatkxi). At Frontier College in Canada, literacy is the window to the commur@y. Its central curriculum deals with"the real issues in ~ple's lives. The College is in the business of building community. `HOME,' tintin.actfrorn wgeone: welfare policies. Inde&l, if a service provider fails to compIy with service system regulations, people with disz@ilitie.srisk loss of their place to stay. CONTROL: people have control of their homes when they tive a choice of the place that they live and a choice of the people they live with. Many existing service practices deny people control of their own homes. SK of household is typically set by policy or by service provider judgments Egarding the number necessary for economic viability. The people who happen to live together in a facility, and often the people who share a bedroom, are mordikely to be selected by the accident of who happened to be eligible for a vacant bed than by mutual agrkement or interest among those who live together. OWNERSHIP OR TENANCY: Many peoples' pride of ownership reflects the ftdtlllment of a personal dream and frequently motivates efforts to improve and personalize property and strengthen be local social fabric. However, mariy people wifh severe disabilities cannot even establish tena&y. State and federal disability policies must influence the extent to which people with severed inabilities can control their own homes. policymakers who want to supycxt people with severe disabilities to be at home will challenge and change two damaging assumptions: 1. nxidents of facilitiesde.serve higher levels of per-person expenditure than people with their own homes; and 2. people who rely on public funds for necessary assistance must be passive and grateful recipients of professional control. `Those who want to assist people with severe disabilities to enjoy the benefits of tetincy and ownership will work on t@ee fronts: 1. they. will, separate support services from facilities; 2. they will devise ways to increase material resources at people% disposal; and `-l 3. they will seek out and create a variety of public and civic approaches to insure a decent standard of affordable housing. These thoughts are best summarized in a statement made by Connie Martinez, a leader in Ca@d People first of Sacramento, about the fmt bread that she baked, "That was the best bread I ever ate because that bread was the bread of my knowledge. " Futurity n First Class U.S. Postage DEPARTMENT OF ADMINISTRATION PAID Permit No. 171 Governor's Planning Council on St. Paul, MN Developmental Disabilities 300 Centennial Office Building 658 Cedar Street, St. Paul, MN 55155 Roger Strand, Editor 612/2tM4J18 MZ/2WlllS2 TOO TIME tlATED MATERIAL @ recyckdp.per