INFORMATION EXCHANGE Published monthly by the Developmental Disabilities Program of the Metropolitan Council Metropolitan Council 300 Metro Square Building St. Paul, Minnesota 55101 Toni Lippert: 291-6364 Terrence Kayser: 291-6356 METRO DD PROGRAM NEWS Status of Community Work Training Program A consultant, JoAnne DeBerry, presented three, one-half day workshops on new and innovative teaching methods that work with severely handicapped persons. Approximately 45 staff persons from four agencies participated in the workshops. After the formal classroom presentations, the consultant will go to the individual agencies to give on-site follow-up assistance to the participants of the workshops. Alternative Community Systems, Inc. another project consultant, has been in contact with all of the agencies since October 1 to determine agency needs and goals. This phase of the program has been completed and they will start working with the agencies on an individual basis to tailor a program of technical assistance designed to help them meet the goals of the project. The Metropolitan Council staff of the Community Work Training Program is also making arrangements to provide supervisors and counselors from the Division of Vocational Rehabilitation with inservice training. The presenters of the training workshops will be national experts in the field of community-based training for developmentally disabled persons. The first presenter will be Paul Wehman from Virginia Commonwealth University, who will present a one-day workshop for DVR personnel in mid-February. Vol. 10 No. 1 January 1985 DD Information Exchange encourages readers to send employment opportunity information for publication in this newsletter. We are not able to include "employment wanted" items, however. The staff of the Developmental Disabilities Program wish all our readers "Happy Holidays." NEW SERVICES Job Accommodation Network Job Accommodation Network (JAN) is a system that allows a business to talk to another business about ways to manage disability costs. It is also a system whereby such accommodation information is collected to be shared with other businesses in helping disabled persons in the work environment. The President's Committee on Employment of the Handicapped (PCEH) has involved private business and industry, the federal government and the West Virginia Research and Training Center in the network system. The system will be developing a computerized database of job accommodation information. JAN has successfully gathered needed information from employers nationwide on how accommodations were made for the disabled, what the costs were, and what Job Accommodation Network the availability is on devices used. It has put the information into one retrievable package. The primary objective of the network is to enable employers to find out what other employers have done in accommodating "functional limitations." This may be a new term to many, but it is logical and accurate to describe a person s job related limitations. It enables the prospective employer to pinpoint the accommodation needed for a particular applicant in most cases. It often gives employers more than one choice in making needed accommodations. At the same time it removes the focus from the disability and puts the concern on the job duties. JAN provides this service free to all employers in the United States via an 800 toll-free number (1-800-JAN-PCEH) which allows any company to gather needed information in minutes. For more information, write JAN, PO Box 468, Morgantown, W. Va. 26505 or call, 1-800-JAN-PECH. DEAFNET--A New Service for Hearing-Impaired People DEAFNET is a computer communication network that enables hearing impaired persons to communicate with one another. Users of this service connect with a central computer using any kind of TTY/TDD s or computer terminals to send and receive messages. These messages can be left and picked up by the users electronic mailbox. DEAFNET is a demonstration project made possible through a grant from the Minnesota Division of Vocational Rehabilitation. It is a available on a tefal basis until Feb. 28, 1985 and is free to all TTY/TDD and computer terminal users who have a "mailbox." A mailbox is given to individuals or groups who attend one to three training sessions. DEAFNET (Continued) For more information, contact Amy Hawks, DEAFNET Specialist, Minnesota Foundation for Better Hearing and Speech, 50B Bremer Building, St. Paul, Minnesota 55101. Tel. (612) 222-6866 Voice/TDD. FOR YOUR INFORMATION Placement Fees Can Be Reviewed In light of recent legislative changes, the Department of Human Services . instructed counties to offer parents of children in placement, the opportunity to review the fees they pay. Under the new legislation, the maximum amount that may be charged is five percent of income. Counties have been instructed to offer several options for establishing fees until the rule for the new legislation is established. This will probably take almost a year to complete. Parents interested in a review which may result in a reduction of their fee should call their County Social Services Department or their local office of the Association for Retarded Citizens. Poster Child Contest SERTOMA (Service TO Mankind) and the Minnesota Foundation for Better Hearing and Speech Parent Network announce the first annual Minnesota Poster Child Contest. The contest is conducted in conjunction with Better Hearing and Speech Month (May) and is a campaign to promote public awareness about communicative impairments. Poster child nominees must be at least four, but no older than seven years of age as of May 1, 1985, and must have a moderate to profound hearing impairment. Contestants may be sponsored by parents, friends, teachers, audiologists, speech clinicians or organizations. Contest entry forms may be obtained from Minnesota Foundation for Better Hearing and Speech, 508 Bremer Bldg., 7th and Robert Sts., St. Paul, MN 55101. Tel. (612) 222-6866 V/T W ). Deadline for entry submission is February 1. Request for Information The Epilepsy Foundation of America (EFA) is initiating a new service called the Program Exchange and is seeking information on programs that are successfully serving people with epilepsy and other disabilities. The goal of the Program Exchange will be to provide technical assistance to EFA affiliates and other organizations that wish to start programs for people with epilepsy and need a proven model on which to build. EFA is seeking information on successful programs in areas such as respite care, independent living services, recreation and camping, education, self-help, family support, vocational training and fund-raising. Send information to Epilepsy Foundation of America, Program Exchange, 4351 Garden City Dr., Landover, Md. 20785. Volunteers Needed Volunteers are needed to help handicapped and elderly people and people with low incomes prepare their income tax returns. Volunteers] attend a training course in December or January, then work a few hours a week from February 1st to April 15. For information on training classes contact Dorothy Hanson or Kevin Lorenz at (612) 296-0557. Seminars Offered DLM Teaching Resources of Allen, Texas offers three seminars on the Woodcock-Johnson Psycho-Educational Battery/Scales of Independent Behavior (WJ/SIB) to professionals who work-with exceptional individuals in special education and related fields and for people with training responsibilities in university programs. The seminars have been developed in cooperation with the test authors to provide the most comprehensive and expert instruction possible. Included in the author team are: Seminars (Continued) --Richard W. Woodcock, Ed.D., Director Measurement/Learning/Consultants; --Robert H. Bruininks, Ph.D., Professor and Chair, Department of Educational Psychology, University of Minnesota; --Richard F. Weatherman, Ed.D., Professor, Department of Educational Policy and Administration and Department of Educational Psychology, University of Minnesota; and ---Bradley K. Hill, M.A., Assistant to the Director of the Center for Residential and Community Services, University of Minnesota. The seminars are offered at specific times at various locations throughout the country and will be offered in Minneapolis on February 6 and 7. To obtain a registration form or for more information, contact DLM Teaching Resources, One DLM Park, Allen, Texas 75002. Tel. (800) 527-5030. Nominations Sought Sister Kenny Institute is seeking nominations to recognize those employees with disabilities who have successfully contributed to the quality of work and community life, as well as to recognize those employers who promote meaningful and challenging work opportunities. All employees and companies nominated will be honored at the Institute s Projects with Industry Awards Banquet on Feb. 8, 1985. Five Outstanding Employee awards will be presented at the awards banquet. Employees may be nominated from businesses, organizations or government agencies. For a nomination form, or for more information, write Projects With Industry, Vocational Services Department, Sister Kenny Institute, 800 E. 28th St. at Chicago Av., Minneapolis, MN 55407. Tel. (612) 874-4449. RECREATIONAL OPPORTUNITIES Snowmobile Ride The St. Paul Association for Retarded Citizens (ARC) is sponsoring its fourth annual Snowmobile Ride on Saturday, Feb. 2, starting at 9:30 a.m. All riders should register at the Phoenix House near Lindstrom, Minn. The ride will consist of a 50-mile route following trails of the Chisago Trail System and will begin and end at the Phoenix House. For more information, contact Richard Helgeson at St. Paul ARC. Tel. (612) 224-3301. Vacation Program for Autistic People Alternatives for Autistic People, Inc. and the Minneapolis Park and Recreation Board are offering a winter vacation recreation program to 14 adults and children. Each participant will be involved in either morning or afternoon activities for six days. The program is intended for people who are autistic or similarly disabled. They must be ambulatory and live in their family homes on an on-going basis. Program dates are Dec. 26, 27, 28, 31 and Jan. 2 and 3. For more information call the Armatage Neighborhood Center at (612) 560-5300. Budget Rent A Car Program The Budget Rent A Car ant Association for Retarded Citizens/USA Commitment Program has been established. About S15,000 will be available annually for vocationally related projects for people who are mentally retarded. Local and state ARC units and other private, nonprofit corporations that serve individuals with mental retardation are eligible. Applicants should contact the marketing department of the Association for Retarded Citizens (ARC) national headquarters at PO Box 6109, Arlington, Texas 76011, to receive instructions for submitting proposals for 1985. Budget Rent A Car Program (Continued) Funds are being raised through the sale of Magno soap, exotic ebony bars made in Spain and packaged as a bath-eke bar ant as a three-bar gift set. Each type costs S2. Sales of the soap began earlier this year at Budget Rent A Car offices across the country. Over 80 percent of the funds raised hill go into the Budget Rent A Car Vocational Opportunities Program ant ARC National Headquarters will administer the program. The program will provide funds for a broad array of vocationally-related programs in local communities that foster successful employment and greater self-sufficiency for individuals who are mentally retarded. New Job Created A new position has been created by the State of Delaware through ARC s On-the-Job Training (OJT) project with specific funds from the Delaware Foundation for Retarded Citizens. The position is that of "Generic Agency Aide," a special position that allows adults who are mentally retarded to work in a competitive environment of state agencies. Generic service aides perform basic tasks that include delivering the daily mail, photocopying material, messenger service and light filing. Qualified employees are prescreened by the office of vocational rehabilitation and referred to OJT placement staff for evaluation. OJT Project implements hope the Delaware program will stimulate other states to develop similar programs. "Some day we want to see a Generk Agency Aide classification, held by qualified persons with mental retardation, in every state," said OJT Project Director Michael Scumbaugh of Arlington, Texas. "We re looking at ways to expand Delaware's success." For more information on the program, contact William Wiest, Director, ARC/Delaware, PO Box 1896, Wilmington, Del. 19899. INFORMATION EXCHANGE STATE SUPPLEMENT Development Disabilities Program 201 Capitol Square Building 550 Cedar Street St. Paul, Minnesota 66101 Minnesota State Planning Agency Roger Strand 612/296-4018 Editor COUNCIL ON FAMILIES AND CHILDREN ISSUES EFFORT The Governor s Council on Families and Children, Department of Human Services, has issued a report with recommendations. The report supports the establishment of a Children s Trust Fund to finance the expansion of family based services to prevent child abuse and neglect. Congress has approved matching funds for states that set up trust funds and at least 20 states have already passed such legislation. Other recommendations of the Council were: --Expand child care alternatives; --Have state agencies prepare "family impact statements" evaluating the effects of policies and programs on families and children; --Improve early identification and intervention programs providing health care monitoring for children; --Increase support for educational programs to enhance parent/school partnerships; --Support catastrophic health insurance to insulate families from devastating financial emergencies; --Support legislation to expand community based services for supporting disabled family members at home. For copies of the report and further information, contact: Sheila Moriarity, Dept. of Human Services, 400 Centennial Office Bldg., St. Paul, Minn. 55155. Tel: (612) 297-3381. January 1985 MENTAL HEALTH ASSOCIATION PREPARES FOR 1985 LEGISLATIVE SESSION--POSITION PAPER PUBLISHED The official position of the Mental Health Association of Minnesota (MHAM) has recently been approved and published by its board of directors and public affairs department. Among several issues addressed, the stance on deinstitutionalization is timely with respect to the anticipated discussions about state hospitals during the next session of the Minnesota Legislature. That position statement reads: "The MHAM supports policies of deinstitutionalization that foster the independence, rather than dependence, of persons with mental illness. The essence of deinstitutionalization lies in the enhancement of the individual s capacity for independent decision making, independent action, and attainment of optimum personal goals through the use of various components of a supportive mental health service system." Other issues or policy positions address the areas of civil rights, development of a state mental health plan, minimum standards employment/support, education and residential services, early intervention, respite care, case management, and appropriate care and treatment. The entire text of the position paper was published in Focus in Minnesota, Dec. -84/ Jan. 85. For further information, contact: HMAM, 5501 Green Valley Dr. Bloomington, Minn. 55437.(612) 835-9046. NEW COURT MONITOR ENCOURAGES DIALOGUE, UNDERSTANDING AND NEGOTIATION After moving from New Hampshire, Richard A. Cohen started his appointment in Minnesota last September as Court Monitor for the Welsh vs. Levine Consent Decree. He has visited several community residential facilities and all but two of the state hospitals in his attempt to acquaint himself with the Minnesota service system and the people involved at every level, in both public and private sectors. He says he has now gained a better understanding of the strengths and weaknesses of the system. As a neutral office of the federal district court, it is Cohen s job to review the extent to which the defendants (Commissioner Leonard Levine, Department of Human Services, et al.) have complied with the consent decree which has been in effect since 1980. He also receives reports of alleged noncompliance with the provisions of the decree. Cohen has requested that a series of working sessions between the plaintiffs and the defendants be scheduled to discuss noncompliance issues and to negotiate possible resolutions to these issues. One recurring issue, for example, has been the failure on the part of the service system to prevent institutional placement of children as well as keeping children in state hospitals for more than the one-year minimum requirement. "Realistic solutions to such issues would call for a proactive approach on the part of state and local governments--to start planning and development of needed services earlier, before crisis stage," Cohen said. In order to reduce future admissions to state hospitals, several communities have already responded to Cohen s suggestions by developing alternative services in the community. When asked about his impressions about Minnesota, in general, Cohen responded that he has detected the existence of schisms between various segments of the service system. "Such diverse views or identifications are largely based on misconceptions, misunderstandings (as Court Monitor (Continued) opposed to reality) and poor communication." Cohen stated. "On the other hand," he observed, "there are extremely talented, capable, enthusiastic people in the system at every level who have very good intentions. The challenge is to harness this energy, knowledge and experience in a systemic way," Cohen concluded. QUALITY OF LIFE ISSUES CONFRONTED More than 140 Minnesotans attended the Quality of Life Congress work session at the Holiday Inn--Capitol in St. Paul on December 5, 1984. This event was sponsored by the Association of Residences for the Retarded in Minnesota (ARRM) through the McKnight Foundation "Client Centeredness Project." The purpose was to produce written statements in the form of resolutions about the rights and quality of life of persons with developmental disabilities. Four resolutions were developed relating to control, making choices, interpersonal relationships, and learning. Four additional work sessions are scheduled during the next few months to discuss implementation plans. For copies of the resolutions and for additional information, contact ARRM, 1885 University Av., St. Paul, Minn. 55104. Tel. (612) 644 9181. CAR RESTRAINTS SAVE CHILDREN AND MONEY A recent study in Tennessee, published by the Journal of the American Medical Association ( Dec., 9, 1984] has found that restraint devices for youngsters (age four and under) virtually eliminate the risk of death in auto accidents. Also, requiring older children to wear seat belts would lessen the severity of injuries and save millions of dollars in medical costs, the study indicated. Of the 17 deaths among children in Tennessee in 1982 and 1983, none of the victims were In restraint devices, the study revealed. The study estimated that only 30 percent of youngsters traveling in cars were in restraint devices, even though this requirement has been in effect since 1978. Tennessee was the first state to pass child restraint legislation. MINNESOTA HEAD INJURY ORGANIZATION PROPOSED Effort is underway to form a new organization, "The Minnesota Association of the National Head Injury Foundation." It is estimated that in Minnesota alone, 9,600 people experience a head injury annually. Over three thousand of this number are left moderately to severely disabled. Members are being recruited. Contact: National Head Injury Foundation, Minnesota Association, 15332 Boulder Creek Dr., Minnetonka, Minn. 55345. "BREAKING AWAY" FILM AVAILABLE A one-hour film entitled Breaking Away may be borrowed from Legal Advocacy for Persons with Developmental Disabilities. Filmed in British Columbia by a group of parents and professional film makers, this documentary film illustrates the major issues surrounding the transition from an institution to life in the community. Contrasts between restrictive and less restrictive settings are brought into bold relief by sharing actual life experiences a severely handicapped child and his family over several years duration. For further information, contact Cathy Macdonald, Legal Advocacy Office, 222 Grain Exchange Bldg., 323 4th Ave. S., Minneapolis, Minn. 55415. Tel. (612) 3380968 or (800) 292 4150 (toll-free). PUBLICATION The Guide to Minnesota Foundations and corporate giving programs, Minnesota Council on Foundations, 1983. This director describes more than 400 private grant makers. The Guide includes introductory chapters on grant making. Indexes and descriptive entries detail funders areas of interest. Cost: $14.95 plus S.90 tax, or tax exempt number. Contact: Minnesota Council on Foundations. 1216 Foshay Tower, Minneapolis, Minn. 55402. TV INDEPENDENT STUDIES OFFERED--CHILD ABUSE AND FAMILY STRESS Two television courses will be offered by the University of Minnesota: 1) Child Abuse and Neglect and 2) Family Stress and Coping. Both courses are taught by nationally know experts at the University. Or. Robertten Bensel, Director of the Program in Maternal and Child Health, will instruct the course on Child Abuse and Neglect. Dr. Hamilton McCubbin, Professor and Head of Family Social Science, will instruct the course on Family Stress and Coping. Both courses are intended for professionals in human services as well as parents. Course requirements can be completed at home via television broadcast throughout the state. The Family Stress series begins Jan. 12, 1985 on Bemidji KAWE, Jan. 19 on Twin Cities KTCA. The Child Abuse series begins Jan. 23 on Bemidji KAWE and Jan. 16 on Twin Cities KTCA. For further information, contact: Department of Independent Study, University of Minnesota, 45 Westbrook Hall, 77 SE Pleasant St., Minneapolis, Minn. 55455. Tel. (612) 376-4925. COURSE ON LOBBYING OFFERED "Lobbying--An Empowering Process" is a course being offered by the Metropolitan State University on Tuesday evenings, from Jan. 8 through March 19. LeAnne Nelson Dahl and Mel Duncan will serve as instructors. For more information, call (612) 296-3875 or (612) 644-1651. EVENTS Jan. 17 "The Helping Relationship: is a seminar to be held in Rochester, Minn. The instructor will be Don Hrdina, M.S.W., Supervisor of the Medical Social Services Department of the Mayo Clinic. Fee: S35. For more information, contact Beryl Byman, University of Minnesota, Rochester Center, 1200 S. Broadway, Rochester, Minn. 55904. Tel. (507) 288-4584 or (612) 224-3106. YEARNING FOR LEARNING The state Developmental Disabilities (DD) Program Office has acquired several education, training and resource materials. THE FOLLOWING MATERIALS MAY BE BORROWED FROM THE STATE OFFICE ONLY, LOCATED AT THE ADDRESS ON THE FRONT SHEET OF THE BLUE SECTION OF THIS NEWSLETTER Mainstreaming Preschoolers: Children with Learning Disabilities: A Guide for Teachers, Parents, and others Who Work with Learning Disabled Preschoolers. Alice Hayden, Robert Smith, Caren Saaz von Hippel, and Sandra Baer. Washington: U.S. Department of Health and Human Services, 1978. This book describes mainstreaming and its effects on children with learning disabilities. The authors provide guidelines about how parents, teachers, and other people can help in the mainstreaming process. This book is one of seven books the Department of Health and Human Services has issued regarding mainstreaming and its effects ' on children with different disabilities. Accounting and Financial Reporting: A Guide for United Ways and Not-for-Profit Human Service Organizations. Alexandria, Va: United Way of America, 1974. Principles of accounting that are important to know in the operation of human services organizations are outlined in this text. The elements involved in keeping a complete financial system are outlined. Readers will gain an understanding of what the standards are regarding completeness of financial and accounting records. INFORMATION EXCHANGE Published monthly by the Developmental Disabilities Program of the Metropolitan Council Metropolitan Council 300 Metro Square Building St. Paul, Minnesota 55101 Toni Lippert: 2916364 Terrence Kayser: 291-6356 February 1985 Vol. 10. No.2. NEW DIRECTOR OF DIVISION OF MR SERVICES (DHS) APPOINTED Edward R. Skarnulis, Ph.D., has been appointed Director of the Division of Mental Retardation Services, Minnesota Department of Human Services. His impressive background includes experience as a social worker and director of social services in an Iowa state institution; and director of the division of family resource services and residential services at the Eastern Nebraska Community Office of Retardation (ENCOR). In 1980 he went to Kentucky to become director of the division for community services for mental retardation. He comes to Minnesota from Texas where he served for the past two years as deputy commissioner for mental retardation services Dr. Skarnulis has acted as a consultant on community-based mental retardation services in many states and in other countries. He has extensive, direct experience in social work, long-range comprehensive planning, personnel development, compliance with a class action lawsuit relating to "right to treatment, least restrictive alternatives, etc." quality control, program evaluation and analysis, service development for people with the most severe levels of mental retardation, physical and behavioral disabilities). In other states he has provided services to persons with developmental disabilities who were not retarded but were handicapped by autism, cerebral palsy and epilepsy. He sees such an extension as appropriate because the services needed by people with other related conditions and by their families are so similar to the mental retardation system. His views on the service system stem from having his "roots in the consumer movement" and observing the success of the integrated, community-based service system developed by ENCOR. Dr. Skarnulis' philosophy of services is also reflected in the primary emphasis he gives to the concept of "supporting, not supplanting the natural home." His experience also reinforces the importance of having a cost-effective, comprehensive state plan. He states that such a plan should address integrated residential, educational and vocational alternatives including preschool, supported employment, recreation and leisure activities and respite care services. All programs with which he has been associated have underscored the need for competent case management. He feels it is the key to appropriate service provision as is extension of all services to "people with the most severe disabilities." He believes that a plan should also address whether fiscal policies and legislation support or undermine the principle of the least restrictive setting. Dr. Skarnulis has been involved with the Association for Retarded Citizens (ARC) and recently helped establish the Texas chapter of The Association for Persons with Severe Handicaps (TASH). Among the attractions of his new position in Minnesota, he lists national acknowledgment of Minnesota's history of progressive leadership in politics and in commitments to human services. He was impressed with accounts he has heard of the vitality of other consumer advocacy organizations. He believes that consumers and parents should actively participate with government in establishing public policy. He was interviewed in St. Paul the evening of the "white-out" blizzard through which he drove from the airport. His reaction to Minnesota climatic conditions was that such a bracing environment was challenging. Such an attitude promises his readiness to meet the challenges of providing vigorous and competent leadership in his new position. METRO DD PROGRAM NEWS Training Assistants Needed Persons interested in becoming paid training assistants for the Community Work Training Project are invited to call Terrence Kayser at 291-6356 to obtain information about the program. FOR YOUR INFORMATION Free Income Tax Guides The Association of Retarded Citizens (ARC) of Minnesota has federal income tax guides for parents of children with handicaps. The guides were produced by the ARC Michigan. To obtain a free copy, contact ARC Minnesota, 3225 Lyndale Av. S., Minneapolis, Minn. 55408. Tel. (612J 8275641, or toll-free, 800-582-5256. Section 1619 of Social Security Act Extended Section 1619 of the Social Security Act was extended through June 30, 1987. Section 1619 allows severely disabled SSI eligible persons who are able to engage in "substantial gainful activities" to continue to receive Medicaid benefits. Because they fear the loss of Medicaid benefits and private health insurance, many persons on SSI who wish to work do not. If their earnings exceed S300 per month, of if they work nine months out of any 24, they can lose their benefits and be unable to obtain medical care. The Social Security Disability Benefits Reform Act of 1984 (P.L. 98-460) also requires the Secretaries of Education and Health and Human Services to establish training programs on Section 1619 for staff personnel in the Social Security Administration district offices and vocational rehabilitation agencies to disseminate information to SSI applicants, recipients, and potentially interested public and private organizations. Bed Reduction Plan A consultant report, prepared for the Mental Retardation Division of the Division of Human Services (DHS) by Walker and Associates of Minneapolis recommended that residential facilities voluntarily reduce their size in order to eliminate a total of 730 beds from the community within ten years. The report was commissioned in response to 1983 legislation which, in effect, commits the State of Minnesota to reduce the number of ICF/MR beds. The law sets a reduction goal for 1986 of 500 beds in state hospitals and community facilities. Of the 500 beds, 300 are expected to be decertified in community based facilities and 200 in state hospitals. The law also encourages the development of a voluntary reduction mechanism, and calls for the development of decertification criteria. The consultant report calls for a major shift from reliance on large (16-165 bed) facilities to smaller (6-15 bed) facilities. Individual bed reduction plans would be developed by providers in cooperation with county welfare departments. Incentives to encourage voluntary reduction of size include reimbursement to providers for losses such as will occur when a reduction in client revenues exceeds facility expenses. The state and counties would be asked to pay the provider these extra costs until the facility expenses can be reduced. The report will be reviewed by a OHS task Force and a final report made to the legislature by Feb. 15. Home Accessibility Information Needed Could Minnesotans benefit from a service that would encourage greater independence for handicapped persons by making homes and apartments more accessible? Examples of how people could use financial and technical assistance for home improvements are being collected by the Accessibility Information (Continued) Minnesota State Council for the Handicapped. Such data is needed in order to interest the 1985 Legislature establishing such a service. Personal experience, needs and ideas should be conveyed to: Patti Hague, Legislative Specialist, Minnesota State Council for the Handicapped, 208 Metro Square Bldg., St. Paul, Minn. 55101. Tel. (612) 2972029, or, toll-free, 1-800-6529747. Minnesota Committee for the Handicapped Action Alerts The Minnesota Committee for the Handicapped (MCH) is seeking people who will respond to calls to action on legislation in the areas of special education, employment and rehabilitation. MCH's new computerized notification process will increase the efficiency of getting information to handicapped people and advocates so that they can immediately react at critical points in the legislative process. Persons who volunteer will be sent action alerts just before key votes are apt to occur on education, employment and rehabilitation bills etc. Those who are notified would then be expected to write or call their legislator quickly. The purpose of this network is to increase the number of disabled constituents and advocates that legislators hear from as they vote on legislation that affects people with disabilities. To participate in this network, the following information is needed: --Your name and address, including zip code, --Whether you are a disabled person, parent of a disabled person or a professional, --Your state legislative district number (or the name of your state representative), --Your congressional district number (or the name of your federal representative), --Your areas of interest: special education, education, rehabilitation. Action Alerts (Continued) Send the information listed above to Judie Rivkin, MCH, 2527 Monterey S., Minneapolis, Minn. 55416. Tel. (612) 922-4544. RECREATIONAL OPPORTUNITIES Interpreted Performances for Hearing Impaired Persons Interpreted performances of theatre productions for persons who are hearing impaired will be offered at the following times: -- Feb. 10 - "The Front Page", Chimera Theatre, St. Paul, at 2 p.m. -- Feb. 20 - "Mystery of the Tattered Trunk," Children's Theatre, Minneapolis, at 10 a.m. Photography Class The Association for Retarded Citizens (ARC) Dakota County plans to offer a photography class for adults who are mentally retarded and who wish to learn the basics of photography. The class will start in early February and end in mid-March. The cost will be a maximum of $5. For more information, contact Suzy Zender, ARC/Dakota County at (612) 4572588. Adapted Aquatics A swimming class for adults with physical disabilities, including those with limited mobility and/or wheelchairs will be offered by the Bloomington Education Center, Feb. 7 - April 18. Students are welcome to bring a friend or family member at no extra cost. The instructor is certified in adapted aquatics and trained aides will be available to assist. A doctor's written permission is required for those planning to enroll in the class. -3- Adapted Aquatics (Continued) The class will be held at Oak Grove Junior High School, 1300 W. 106th St., Bloomington, on Thursdays from 8 - 8:45 p.m. The cost is S17.50. To register, call Lynn Dennis, Learning Exchange Coordinator at (612) 8879226. SERVICES Disabilities Course Offered The Minneapolis Technical Institute is offering the 'Assistant to Persons with Developmental Disabilities' course beginning on April 1. The course is designed to provide an understanding of developmental disabilities, legislation and skills needed to assist client and family. For more information or an application form, call (612) 370-9431 or (612) 3709444. Legislative News Service "Capitol Ideas" is a weekly newsletter on current state and federal bills affecting persons who are handicapped. The January 3, 1985 issue lists related Minnesota legislative committees and their members. To obtain a single issue or to be on the regular mailing list, write or call the Minnesota State Council for the Handicapped, 208 Metro Square Bldg., St. Paul, Minn. 55101. Tel. (612) 296-6785, or toll-free, 1-800-652-9747, voice and TTY. Education and Support Group Formed Southside Services, Inc. which provides services to mentally handicapped persons, offers an education and support group for female victims of sexual assault who are mentally handicapped. The group is designed to provide support services to those whose ability to read, write or comprehend may be limited. Topics discussed are: myths and facts about sexual assault, self-image and self-esteem, sexuality and relationship issues Education and Support Group (Continued) and self-protection. The next group wit, begin in March, 1985. For more information, contact: Jean Swanson, Southside Services, 2830 Cedar Av. S., Minneapolis, Minn. 55407. Tel. (612) 721-1696. WORKSHOPS, CONFERENCES Feb. 13 "Strategic Planning" is one in a series of workshops of the three-year Organization and Management Development series especially designed for administration staff and board members of developmental achievement centers, residential facilities and sheltered workshops. The workshop will be held at the Ramada Hotel, 4200 W. 78th St., Minneapolis from 8:45 a.m. - 4:30 p.m. The preregistration fee for this one-day program is S10 for participants whose agency has enrolled in the entire eight module series and S20 for those enrolling in this workshop only. Registration must be received by Feb. 8; to obtain a registration form, contact the Government Training Services, 202 Minnesota Bldg., 46 E. 4th St. St. Paul, Minn. 55101. Tel. (612) 222-7409. Feb. 27 The training and placement Service of the Epilepsy Foundation of Minnesota will hold a free employer seminar and Job fair 1 - 4:30 p.m. at the Farmers Union Bldg., 1717 University Av. W., St. Paul. The employer seminar, "Meeting the Challenge Through Reasonable Accomodation" will focus on the legal, practical and safety aspects of reasonable accommodation. For more information, contact Martha Benton or Peggy Huot at (612) 645-8675. REPRINTED FROM COURAGE CENTER PUBLICATION, "MEETING GROUND" JANUARY/FEBRUARY 1985 WITH PERMISSION OF EDITOR AND AUTHOR Tax deductions and credits for parents of disabled children Arthur J. Sauter, CPA-Doloitte Haskins & Selle This article describes many of the tax credits and medical expense deductions available to parents of disabled children. These tax benefits were described in previous years' articles. New rulings and decisions during the past year generally dealt with disability issues similar to those discussed in the article. It may be helpful to first briefly discuss the rules that government deductions as they apply to all taxpayers. The law provides for a limited deduction from adjusted gross income for an individual's unreimbursed expenses incurred for medical care. "Medical care" is defined broadly to include amounts paid for "the diagnosis, cure, mitigation, treatment or prevention of disease, or for the purpose of affecting any structure or function of the body." These expenditures are to be distinguished from expenses for treatments beneficial to the general health and well-being of an individual, which are nondeductible. The courts have stated that not every expenditure prescribed by a physician is to be categorized as "medical care." Medical insurance premiums and qualifying medical transportation costs are also included in amounts paid for medical care. Medical expenses are deductible, however, only to the extent that their total for the year exceeds five percent of the taxpayer's adjusted gross income. Beginning in 1934, the one percent floor under medicines and drugs has been eliminated. However, only costs for prescription drugs and insulin will be eligible for the deduction. This restriction bars a deduction for medicines or bugs that may be recommended by a physician but that are obtained without a prescription, such as aspirin over-the-counter cold remedies, eye drops, skin ointments, etc. Also new in 1984 is the allowance as a medical deduction of lodging expenses incurred to enable an individual to obtain medical care away from home. The lodging expenses of a person who accompanies someone who is unable to bawd alone are also deductible. There is a daily limit to the deduction of $50 per person. Expenditures for which a taxpayer is reimbursed by insurance during the calendar year are not deductible If a deduction is taken in one year, and the taxpayer received a reimbursement in a subsequent year, the amount of the reimbursement must be included in income in the year of receipt. The tax savings from deducting medical expenses can be enough to cut out-of pocket medical care costs effectively by 15 to more than 50 percent. Parents of disabled children know how important these tax benefits can be in reducing the financial strain caused by the extraordinary medical expenses they incur. The usual expenditures for doctors, hospitals, medicines, eyeglasses, hearing aids, wheelchairs and crutches are easily recognized as deductible expenses. However, taxpayers, including parents of disabled children, often overlook many other expenditures that qualify for a medical expense deduction. These frequently missed deductions may be described as the additional expenditures required for the care or treatment of a disabled child Generally, these additional costs may be grouped in the following three categories: 1.The additional costs necessary to modify or adjust a home ant items of personal property to support and maintain a disabled child, 2. The costs of special education and training, 3. Other expenses, including certain transportation costs, for providing medical care. The additional costs incurred to modify a home or other property are deductible to the extent the costs exceed the increase in value of the property. These additional costs include "medically necessary" installation expenses of, for example, a ramp, elevator, swimming pool, air filter, humidifier or air conditioner. The costs of repair and maintenance or "medically necessary" equipment, including the cost of electricity for operation, are also deductible. The courts, however, appear to have imposes monetary restrictions on how "extravagant" improvements to a home can be. It is advisable, therefore, to obtain a doctor's prescription for any major "medically necessary" expenditure, as well as a "before and after" appraisal of home or other property as support for the medical expense deduction. The courts and the Internal Revenue Service continue to define further the deductibility of capital expenditures for medical purposes. For example, the cost of building a swimming pool has to be for the primary purpose of, and related directly to, medical care. Strongly were whether swimming had been prescribed for the a deviation of a particular disease, whether the pool was suitable for general recreational use, whether it was specially designed and equipped, and whether the taxpayer made a "strong showing of necessity." Decisions in this area also seemed to be based on whether comparable treatment could be obtained elsewhere (e.g., at a nearby "Y") at less cost even though not as convenient. A private letter ruling found that the cost of a swimming pool in excess of any increased home value was deductible by parents whose son was born with a serious back ailment- myelomeningocele. The son's physician prescribed an extensive exercise ~O'`~, including swimming therapy, from early infancy through adulthood. The prescribed pool needed a fairly constant temperature, recessed stairs, parallel bars and shallow area for childhood exercise. In determining deductibility, the Service noted among other things that the swimming pools did not meet the child's needs. Similarly, the Service has ruled that the annual swimming pool fee charged the parents of a nine-year old son with rheumatoid arthritis was deductible. A fee was pan' to permit the child to use a pool in another school district since there was none available in the county of resistance. The cost of transportation three or four times each week to ant from the pool was also deductible. The cost of telephone equipment designed to enable a hearing impaired child to use the phone is a deductible medical expense. The Internal Revenue Service has ruled that the extra cost of a specially equipped television set or the cost of the television adapter, both of which enable a hearing-impaired child to understand television programming by playing subtitles on the screen, qualify as deductible medical expenses. The costs of equipping a van with a wheelchair tiedown clamps, raised roof and other hydraulic and electrical equipment are deductible. As an alternative, if one price is paid for a specially modified vehicle, the difference in its cost from the cost of the vehicle without modifications is tax deductible. Parents have been allowed a financial deduction for the cost of a car air conditioner for a son whose doctor prescribed relief for the child's respiratory disease. Of course, the amount allowable was only the portion of the cost that exceeded the increase in the car's value. The costs of special education and training for a disabled child often qualify as a medical deduction. Tax deductions to page 6 -5- Page 5 Tax Deductions from page 5 Parents of a disabled child can deduct the cost of special schooling when its principal purpose is to alleviate the disability. Tests, evaluations and special training, such as lip-reading, speech or braille instruction, are deductible. Tuition costs may be deducted as medical expense only if (1) the school is "special" (i.e., it provides medical care) and the educational services it extends are merely incidental to its medical resources, or (2) medical care is actually provided (although that is not the primary reason for the student's presence in the school). In the former situation, the entire expense of the school is deductible, and in the latter only the expense directly attributable to medical care is deductible. A medical expense deduction has been allowed for tuition payments made by parents to a special school for a child with a severe learning disability. Amounts paid for a child's tutoring by a teacher who is specially trained and qualified to deal with severe learning disabilities are also deductible, provided the child's doctor recommends such tutoring. In addition, amounts paid by parents for a child's language training undertaken to correct a condition caused by congential brain damage are deductible. Two court cases concerning special education expenses for learning disabled children resulted in opposite decisions. Where a school, using the Montesson method, offered a special program for children with learning disabilities, the Court held that the education costs qualified for the medical expense deduction. The treatment was directly related to the alleviation of a medical disorder. Even though there were no psychologists or psychiatrists on the staff, all staff members were educators specializing in the field of learning disabilities. The case that reached a contrary conclusion involved a special preparatory school for underachievers and students with certain learning disabilities (dyslexia or minimal brain damage). The school did not provide any type of formal therapy. A medical deduction for the special education was denied because the school's curriculum was the same as that offered in public schools and because only minimal medical care was provided. The courts have held several times that the cost of sending a child with dyslexia to a private school that offered small classes, individualized instruction, intensive remedial help and special tutoring was not deductible. One court said that "the only treatment for dyslexia is training and study skills...education, rather than medicine or therapy, is the means to offset the effect of dyslexia." The school did not provide medical care and offered the same curriculum for handicapped and nonhandicapped students. An important consideration with respect to medical expenses is the fact that the deductibility of such expenses does not depend on the title or qualification of the person rendering the care; rather, it depends on the nature of the care itself. Favorable rulings have held that amounts paid by parents to have someone guide their blind child throughout the school day were deductible expenses. Amounts paid to a nonprofessional individual for administering "patterning" exercises to a cerebral-palsied child qualify a medical care expense. The costs of the regular printed editions of braille books and magazines bought for a blind child in connection with the child's education are also deductible. There are other deductible expenses for providing medical care, including certain transportation costs that parents of a disabled child may incur. These qualifying expenses include the cost of a hospital bed, special mattresses, plywood bedboards, corrective shoes, elastic support stockings and the cost of a service that uses computers to store personal medical information. The Internal Revenue Service held that the cost of buying an extra pair of shoes for a child whose feet were of unequal size was a deductible medical expense. The Service also reaffirmed the deductibility of the cost in excess of the cost of normal shoes of high-top orthopedic shoes with a lift and a Thomas heel. Parents have been allowed a medical deduction for the cost of disposable diapers for their four-year-old daughter who was severely brain damaged and completely incontinent. Parents whose son was a patient in a psychiatric hospital were able to deduct their costs of travel and telephone for consultations with the professional staff. Consultations or regular visits were undertaken as part of the child's required therapy program rather than for personal reasons. The cost of a disabled child's bus or taxi fare to and from special schools and instruction, hospitals and doctors' offices are deductible. If the parents drive the child, automobile expenses calculated at a rate of nine cents a mile and parking fees are deductible. A deduction, not subject to the medical limitation, is allowed for up to $1,500 of qualified adoption expense paid for adoption of a child who the State determines is a "child with special needs" as defined for purposes of the Social Security Act adoption assistance program. This is a child who the State determines cannot or should not be returned to his or her parental home, who has a specific condition such as ethnic background, age or physical, mental or emotional disability that makes the child difficult to place, and who has been the subject of an unsuccessful placement effort. Because of a change in the law in 1983, payments to reimburse foster parents for the expenses-designated "difficulty of care payments"-of caring for a disabled foster child in their home are not subject to federal income tax. Foster parents who received qualifying foster-care payments during 1981 or 1982 should consider filing amended returns if the payments were included in income. In addition to the tax benefits resulting from deducting medical and other expenses in computing a person's taxable income, certain income tax credits allowed on parents' tax returns provide other ways to offset the expenses associated with a disabled child. Although the benefit of tax deductions is dependent on an individual's tax bracket, the cash benefit of tax credits, on the other hand, equals the actual credit amount since the tax is reduced by the total amount of the credit. A tax credit is allowed for 20 to 30 percent of the amount paid to someone to care for a disabled dependent child while parents work, seek employment or are full-time students. Payment for care may be made to a nondependent relative, e.g., the child's grandparent. This "Child Care Credit" is limited to the lesser of $720 per child or $1,440 on the federal return. Additionally, the credit cannot exceed 30 percent of the earned income of the parent with the lesser earned income. In addition, for dependents who are quadriplegic, blind or deaf, the Minnesota tax return allows a tax credit of $70 for each condition. A quadriplegic is defined as an individual who has a congenital or traumatic partial or total loss of all four limbs or who has a disability that substantially impairs the functioning of all four limbs. The credit for blindness is available if a dependent child's visual acuity does not exceed 20/200 in the better eye with correcting lenses, or if there is a limitation in the fields of vision such that the widest diameter of the visual field subtends an angle no greater than 20 degrees. A dependent child is deaf if the average loss in the speech frequencies in the better ear, unaided, is 92 decibels or worse. These various tax deductions and credits are some of the ways that the burden of extraordinary expenditures by parents of disabled children can be reduced through tax savings. When incurring a medical expenditure, however, it is beneficial to provide proper documentation and planning by consulting your child's physician and your tax accountant. Editors' Note: We wish to thank Art Sauter for again contributing this valuable article to the Meeting Ground newsletter. Mr. Sauter is a Certified Public Accountant with the firm of Deloitte, Haskins and Sells, and is also a member of the Courage Center board of Directors. -6- INFORMATION EXCHANGE STATE SUPPLEMENT Developmental Disabilities Program 201 Capitol Square Building 550 Cedar Street St. Paul, MN 55101 Minnesota State Planning Agency Roger Stand 612/296~018 Editor UNIVERSITY AFFILIATED FACILITY SATELLITE APPROVED FOR MINNESOTA Minnesota is expected to be the site of a new University Affiliated Facility (UAF) Satellite Center under funding from the Administration on Developmental Disabilities, Washington, DC. This will be a cooperative endeavor that will be directed by Robert H. Bruininks at the College of Education, University of Minnesota, and Richard P. Nelson, Gillette Children's Hospital, who will serve as associate director. The Minnesota UAF Satellite Center will support activities in interdisciplinary training for personnel, the provision of exemplary services to developmentally disabled persons and their families, and information dissemination. Some of the key areas that will be addressed in initial Satellite Center activities include: case management; problem behaviors and behavior management; adult education; and integration of developmentally disabled persons with special physical and health needs. The need for the establishment of a UAF Satellite Center in Minnesota was documented last fall under a grant awarded to the University of Iowa's UAF, which served as host and technical advisor for the study. For further information, contact: Martha Thurlow, Department of Educational Psychology, University of Minnesota, 350 Elliot Hall, 75 E. River Rd., Minneapolis, Minn. 55455. Tel. (612) 376-4511. REQUEST FOR PROPOSAL ANNOUNCED- EMPLOYMENT RELATED DEMONSTRATION PROJECTS The Governor's Planning Council on Developmental Disabilities is inviting applicants for "Projects to Improve the Quantity and Quality of Employment Related Activities for Developmentally Disabled Persons." Approximately S425, 000 is available this year. Applications must conform to the directions contained in the Request for proposals (FFP). Grants will be for a one-year period beginning Oct. 1, 1985. Applications are due in the Council office by 4:30 p.m. on April 19, 1985. The RFP and application instructions may be obtained from Ron Kaliszewski, Grants Administrator, Developmental Disabilities Program, 201 Capitol Square Bldg., 330 Cedar St., St. Paul, Minn. 55101. Tel. (612) 297-3207. DAY AT THE CAPITOL--FEBRUARY 27 The Association for Retarded Citizens (ARC) Minnesota will sponsor its annual "Day at the Capitol" on Wednesday, February 27, 1985, at the Holiday Inn near the State Capitol (Hwy. I-94 at Marion Street). Registration will begin at 8:30 a.m. A fee of S9.50 will include lunch and materials. A special rally in the State Capitol Rotunda is scheduled at 1 p.m. to support legislation which would expand services to include children from birth to age three. For registration and more information, contact: MC Minnesota, 3225 Lyndale Av. S., Minneapolis, Minn. 55408. Tel. (612) 827-5641; toll free at (800) 582-5266 BURTON BLATT, SOCIAL REFORMIST, DIES News was received recently that Burton Blatt died. Blatt was the Dean and Centennial Professor of the School of Education of Syracuse University. In 1981, he was the keynote speaker at the inaugural conference of the Minnesota Association for Persons with Severe Handicaps. Known as an outspoken reformer in the field of mental retardation, he has left several publications that will be long remembered, such as: Christmas in Purqetory, Exodus from Pandemonium. and Souls in Extremis: An Anthology on Victims and Victimizers. JTPA REQUEST FOR PROPOSALS ANNOUNCED As authorized under Section 123 of the Job Training Partnership Act of 1982 (JTPA), the Department of Economic Security and the State Board of Vocational Technical Education Jointly announced Requests for Proposals (RFP) for funds available through JTPA--Education Coordination. The Act appropriates funds "to eligible participants through cooperative agreements." The Governor's Job Training Council has recommended that 20 percent of these education coordination funds be used to serve special needs groups between service delivery areas (SDAs) and education agencies. A total of S434, 856 will be available statewide to operate one-year projects (not to exceed S70,000 each) starting in July 1985. Bidder's conferences on grant writing training and information are scheduled for Feb. 5, 12, and 27. Proposals are due Monday, April 15, 1985. To obtain more information, contact: Steve Franz, State Board of Vocational/Technical Education, (612) 296-3597, or Kay Tracy, State Job Training Office, (612) 2966064. DIRECTORY ON LEARNING DISABILITIES TO BE ASSEMBLED--ASSISTANCE REQUESTED The Minnesota Association for Children and Adults with Learning Disabilities (MACLD) is attempting to assemble a statewide directory of individuals and agencies who provide services to children and adults with learning disabilities. Such services may include diagnostic testing, tutoring, and/or counseling. Information that would be helpful to potential directory users is needed. Please submit names, addresses, phone numbers and description of services provided to: Audrey Friedman, Directory project Coordinator, 2500 E. Medicine Lake Blvd., Plymouth, Minn. 55441. Tel. (612) 544-6265. CALL FOR ABSTRACTS The Association for Persons with Severe Handicaps (TASH) has issued a call for abstracts in preparation for the Twelfth Annual Conference, Dec. 5 through 7, 1985, to be held in Boston, Mass. Types of sessions include individual paper presentations, poster sessions, panels, and workshops. Submission of completed abstract form are due by Feb. 10, 1985. For abstract format and for more information, contact: TASH, 7010 NE. Roosevelt Way, Seattle, Wash. 98115. Tel. (206? 523-8446. PUBLICATIONS Respite Care Services: A Report Prepared for the Minnesota Department of Human Services. Eden, 1984. This report combines literature review and results from interviews held in five selected counties in Minnesota. Recommendations are made regarding the future development of family support services in this state. Copies are available on a limited basis. Contact: Betty Roskos, Department of Human Services, Centennial Office Bldg., St. Paul, Minn. 55155. Tel. (612) 296-4021. More Prologue. J. Walsh, Mount Olivet Rolling Acres, Excelsior, Minn., 1985. This 65-page booklet traces some of the philosophical and historical changes in Minnesota's service system for Mentally retarded persons. Its contents continue where Mtidred Thompson's Prologue left off in the 1950s. Copies can be purchased for S4, checks payable to Mount Olivet Rolling Acres. contact: Jamey Walsh, Executive Director, Mount Olivet Rolling Acres, 7200 Rolling Acres Rd., Excelsior, Minn. 55331. Tel. (612) 474-5974. Computer-Disability News is a computer resource quarterly newsletter for people with disabilities. For subscription, contact: Computer-Disability News, The National Easter Seal Society, 2023 West Ogden Av., Chicago, Ill. 60612. TRAINING WORKSHOPS SCHEDULED BY PLANNED PARENTHOOD OF MINNESOTA There will be several workshops that may be of interest to personnel working in the field of developmental disabilities, workshops that will be sponsored by Planned Parenthood of Minnesota: --Feb. 11-23, Sexuality and Mentally Handicapped People; --Feb. 26, Co-Dependency and Human Service Personnel; --March 26, Sexuality and Mentally Ill People; ant --April 6, Teaching Self-Esteem and Sex Education. For more information, contact: Planned Parenthood of Minnesota, 1965 Ford Pkwy., St. Paul, Minn. 55116. Tel. (612) 698-2401. PACER SCHEDULES WORKSHOPS ON EDUCATION RIGHTS The Parent Advocacy Coalition for Educational Rights (PACER) will be conducting workshops throughout Minnesota during late winter and early spring. Workshop contents will include information on special education laws and procedures and parents'-rights and responsibilities. Dates and places are as follows: --Feb. 5, Minneapolis, evening; --Feb. 9, Minneapolis, morning; --March 4, St. Paul, evening; --March 9, St. Paul, morning; --March 21, Benson, evening; --April 23, Jackson, evening; --April 30, Minneapolis, evening; --May 7, Virginia, evening; and --May 8, Duluth, day. For more information, contact: PACER, 4826 Chicano Av., Minneapolis, Minn. 55417. Tel. t612) 827-2966 (voice and TDD). DAC DIRECTOR POSITION AVAILABLE Job applications are being requested to fill the directorship position at the Becker County Developmental Achievement Center (DAC) in Detroit Lakes. The center serves 50 adults and 40 children who have a developmental disability. Business and administration background is preferred. Fringe benefits and salary are negotiable. Send resume to: Personnel Committee, Mike Leonard, Chairman, 1312 Loring Av., Detroit Lakes, Minn. 56501. EVENTS Feb. 6 The Governor's Planning Council on Developmental Disabilities meets on the first Wednesday of even-numbered months, from 12 noon to 2:30 p.m. February's meeting will be held at the Earle Brown Continuing Education Center, University of Minnesota St. Paul Campus. These meetings are open to the public. For more information, contact: Audrey Clasemann. Tel. (612) 296-4018. Feb. 9 "Understanding Psychological Reports: Uses for Educational Planning" is a one day seminar to be led by Rozilind D. Kramer, Ph.D., licensed school psychologist. It will be held at the University of Minnesota's Friedell Bldg., 1200 S. Broadway, Rochester, Minn. Contact: Beryl Byman, University of Minnesota, Rochester Center, Rochester, Minn. 55904. Tel. (507) 288-4584 or (612) 224-3106. April 29, 30, May 1 "Individual Justice Plan (IJP)" is a symposium, funded by the Administration on Developmental Disabilities, U.S. Department of Health and Human Services, to be held in Omaha, Neb. The symposium will bring together persons from the criminal justice, human services and advocacy systems. The IJP model will be discussed in terms of how it can be replicated in other states. For more information, contact: DeAnn Hughes, Department of Health, Box 95007, Lincoln, Neb. 68509. Tel. (402) 471-3997. YEARNING FOR LEARNING The state Developmental Disabilities (DO) Program Office has acquired several education, training and resource materials. THE FOLLOWING MATERIALS MAY BE BORROWED FROM THE STATE OFFICE ONLY LOCATED AT THE ADDRESS ON THE FRONT SHEET OF THE BLUE SECTION OF THIS NEWSLETTER Individual Program Planning With Developmentally Disabled Persons. J. D. Parham, C. Rude, and P. Bernanke, Texas Tech University, 1977. That is a group oriented, self-instruction training package, using 3/4. video cassettes and workbook techniques. Because individual program planning requires a team approach, this package is designed to encourage group interaction. Learning to act as a team is the first step toward effective planning with clients. Reproduction of this package is permissible upon notification to the authors. Curriculum Development Process for the Vocational Domain: An Introduction, A. Renzaglia and M. Hutchins, the Community-Based Instructional Program, Ya. 1984. This document provides procedures and instruments that were developed in Albemarle County, Va. This curriculum development procedure focuses on vocational experiences that will be useful to students in obtaining future Job placements. The instruments and process provide a mechanism for conducting an ecological inventory of employers and employment options specific to individual communities. INFORMATION EXCHANGE Published monthly by the Developmental Disabilities Program of the Metropolitan Council Metropolitan Council 300 Metro Square Building St. Paul, Minnesota 55101 Toni Lippert: 291-6364 Terrence Kayser: 291-6356 March 1985 Vol. 10. No. 3. PUBLIC FORUM SCHEDULED FOR APRIL 9TH A public forum will be held on April 9 at 2:30 p.m., sponsored by the Developmental Disabilities Advisory Committee. Edward R. Skarnulis, Ph.D., will be the featured speaker. He is the newly appointed Director of the Division of Mental Retardation Services, Minnesota Department of Human Services. The forum will be held in the Metropolitan Council Chambers, 300 Metro Square Bldg., St. Paul, Minn. 55101. For more information, call (612) 291-6363. METRO DD PROGRAM NEWS Help Needed in Locating Books The following books have been borrowed from the Metropolitan Council's Curriculum Library and not returned: -Toward Excellence: Achievements in Residential Services for Persons wit Developmental Disabilities, Apolioni Capuccilli and Cooke; -Special Educators Guide to Exemplary Curricula, Indiana Dept. of Public Instruction. -Beyond the Ordinary: The Preparation of Professionals to Educate Severely and Profoundly Handicapped Persons Toward the Development of Standards and Criteria, Perske and Smith. -New Life in the Neighborhood-How Persons with Retardation or Other Disabilities Can Help Make a Good Community Better, Perske. -For This Respite...Much Thanks-Concepts, Guidelines and Issues in the Development of Community Respite Care Services, Warren and Dickman. Borrowers are reminded that they are responsible for the replacement of lost or damaged books. If you have one of these books, please return it to the DD library at 300 Metro Square Bldg., St. Paul. CALL FOR PAPERS A call for papers is being issued for a joint conference involving over 20 professional organizations and public and private agencies in Minnesota. The conference, which will be held at the Radisson South in Bloomington, Minn., Oct. 24 and 25, will use the theme of "Looking Ahead to the Year 2000--Working Together". The proposed topics form a diverse list of timely issues, ranging from Advocacy Within a Changing Service Delivery System to Zero Reject Models. A partial list of program topics, can be found in the brochure accompanying this copy of the DD Information Exchange. If you want a copy of the Call for Papers Form, please complete the tear-off segment of the brochure and send to: Minnesota Organizations, Suite 90, 1885 University Av., St. Paul, MN. 55101-3486. Prospective presenters are strongly encouraged to submit papers which demonstrate examples of exemplary cooperation and collaboration between professionals or agencies who work with persons with disabilities. FOR YOUR INFORMATION Political Force Planned by League of Disabled Voters The League of Disabled Voters of Minnesota (LDV) is a non-partisan, educational group created in 1981 to increase the participation in the political process of persons who are affected by disabilities. The League intends to create a viable educated political force comprised of, and representing all disability groups. Membership in the League is open to persons who are citizens and at least 18 years old. The League is open to both disabled and non-disabled persons throughout the state. Local chapters are being organized in several communities. For more information about Joining the League or establishing a chapter in your community, contact: Carolyn Emerson, president, or Dorothy Balen, membership chair, League of Disabled Voters, P.O. Box 6746, Minneapolis, MN 55406. Tel. (612) 870-2624 (Carolyn Emerson, days) or (612) 823-8719 (Dorothy Balen, evenings). Mandatory Secondary Vocational Education The Minnesota Board of Education authorized the Department's Secondary Vocational Educational Section to hold a hearing in February on a rule that would require each Minnesota district to offer 560 hours of vocational education classes per school year. Currently school districts may (but are not required to) offer vocational education. If the district does offer vocational programs for any student, then such programs must be accessible to handicapped students. The proposed rule to require vocational education for students is important to handicapped youth. Persons who wish to be informed of the details about the hearing on the new rule should contact the Secondary Vocational Education Section of the Minnesota Department of Education at (612) 296-3306. PACER selected as Regional Center in National Project Congressional amendments to the Education for All Handicapped Children Act were designed to strengthen parent training programs. The amendments formally recognized and provided funding for programs that would train parents of handicapped children as well as special education professionals. Also funded was a program called the Technical Assistance for Parent Programs (TAPP), a project proposed by the National Network of Parent Centers. Minnesota's Parents Advocacy Coalition for Education Rights (PACER) was selected by TAPP's national coordinator to serve as one of five regional centers through which technical assistance will be offered directly to both established and developing parent organizations. According to Paula Goldberg, who is serving as TAPP director for PACER, technical assistance can include anything from how a parent's group might better reach its target audience, to the correct completion of paperwork required to administer a grant, or to the use of computerized terminology. Groups who wish to receive technical assistance should contact Polly Edmunds, PACER's TAPP coordinator and describe their needs. For more information, call PACER at (612) 827-2966. Spring Quarter Course Offered "Community Leisure Services for Special Populations" is a course that will be offered by the University of Minnesota during the spring quarter. This course will involve activities designed to teach students and practitioners to develop, deliver and evaluate community based leisure services for special populations. The course is open to recreation majors, non-majors and non-university persons from public schools, group homes, developmental learning centers and institutional settings. If not currently Spring Quarter Course (Continued) enrolled at the University, you must apply for "Adult Special Status" in the College of Education. For more information on the course, contact Dr. Stuart J. Schleien at (612) 373-9728 Weekend Retreats Offered The Association for Retarded Citizens of Hennepin County sponsors weekend retreats at Camp Eden Wood in Eden Prairie for mothers of developmentally disabled children. Weekends run from 6:30 p.m. on Friday through 1 p.m. on Sunday and cost S40. Financial assistance for the weekend fee or babysitting cost is available for those who need it. The weekend of March 29-31 is reserved for mothers of teens/young adults/adults and April 26-28 for mothers of infants and toddlers. For more information, call (612) 874-6650. SERVICES Training Tape on Respite Care Available A training tape on respite care produced by the Office of Special Services, City of Bloomington, and Municipal Services Cable Channel 8 is designed to provide background information on disabilities for persons interested in providing respite care. The tape may be borrowed for a period of two weeks, and must be picked up from and returned to the office at 2215 West Old Shakopee Rd., Bloomington. Upon request, a staff person can come and give a preliminary explanation before the tape is shown. There is no charge for this service. A computer listing of individual and agency respite care providers is available to Bloomington residents only. The ~ service connects names of respite CD re providers with persons needing respite care. All arrangements for services are made between the parties involved. For more information, contact (612) 8815811, ext. 315, (TDD 887-9677). Providers of Child-Care Needed The Child Care Information Network (CCIN) wants to expand its referral listing of persons in Hennepin County with skills and experience in providing child care for children with disabilities. These children are enrolled in special education programs, but care is needed before or after school or during evening hours. Providers of respite care are also needed. For more information, call CCIN at (612) 823-7237. Snow Chains for Wheelchairs Lightweight chains for wheelchairs that eliminate spinning wheels on snow, ice, sand and mud have been developed. The chains, called 'ground grabbers' act like miniature automobile tire chains to increase traction. Information on 'ground grabbers' is available from K and R Specialties, 2806 Charles Court NW., Rochester, Minn. 55901. Tel, (507) 281-1351. RECREATIONAL OPPORTUNITIES Winter Sports Programs Courage Center offers several programs for children with physical disabilities: --"Saturday Club" is a program for children ages 7 to 14. The program meets for three, 8-week sessions annually and emphasizes the acquisition and enhancement of socialization, leadership, group decision-making skills, responsibility and the opportunity to try a wide variety of recreational activities including cooking, swimming, sports, field trips, crafts, computer games and more. --"Courage Junior Rolling Rascals" is a program for children ages six to eleven, and is designed to teach basic sports skills, such as catching and throwing. Low organized games are played. All participants use a wheelchair during the program, but do not need to use one for everyday use. -3- Courage Center Programs (Continued) --"Courage Alpine Skiers" offer a downhill ski program in cooperation with Hyland Hills in Bloomington for children six years and older who are ambulatory. One-on-one instruction is provided along with equipment rental. --.Courage Rolling Rowdiesn is a wheelchair sports program for boys and girls 12 to 18 years old. Participants receive skill instruction and competition in basketball, swimming, archery and track and field. Athletes do not need to use a wheelchair for everyday use in order to participate; sports wheelchairs are provided. For further information; call Joan Vanderpool at Courage Center, (612) 5880811, ext. 199. Winter Recreation Families who enjoy the north woods in winter as well as summer may want to consider taking part 1n the family fun weekends offered by the St. Paul YMCA's Camp DuNord. The camp 1s located outside Ely on Burntside Lake. The weekend includes three nights dormitory-style lodging, eight meals, skiing, snowshoeing and other planned, staffed activities. The dates are Feb. 21-24 and Feb. 28 - March 3. The cost for the weekend is S59 per person. To register, or for more information, call (612) 645-2136. Information and Referral Center Renamed The former Information and Referral Center has been renamed the First Call For Help. Residents of the east metro area can call First Call for Help at 2914666, Monday through Friday, 8 a.m. to 5 p.m. For crisis intervention after hours, call Emergency Social Services at 291-6795. WORKSHOPS, CONFERENCES March 5, March 9 Workshops with information on special education laws and procedures and parents' rights and responsibilities have been scheduled for March. St. Paul --7:00 - 10 p.m., location to be announced; Minneapolis --8:45 a.m. - 12:30 p.m., location to be announced. Pre-registration is requested. Call or write PACER, 4826 Chicago Av., Minneapolis, Minn. 55417. Tel. (612) 827-2966. March 13, 14, 15 The 28th Annual Minnesota Council for Exceptional Children Conference w111 be held at the Minneapolis Plaza Hotel, 315 'Nicollet Mall, Minneapolis. For a brochure detailing topics and speakers, write the Minnesota Council for Exceptional Children, 10125 49th Av. N., Plymouth, Minn. 55452. April 19, 20 "Focus on Youth: Prevention and Early Intervention: is the theme of the Spring 1985 Conference of the Minnesota Association for Behavior Analysis. It will be held at the Radisson Metrodome in Minneapolis. For program and registration information, contact: Sherri DeLaHunt, Minnesota Learning Center, East Oak St., Brained, Minn. 56401. FUTURE EVENTS May 5 PACER's Third Annual Benefit will be held at the Cricket Theatre, 528 Hennepin Av. Minneapolis. A silent auction will also be featured. For more information, contact PACER at (612) 827-2966. -4- PUBLICATION HIGHLIGHTS STATE HOSPITAL STUDIES Seven of the eight reports listed in the preceding article are summarized in a publication entitled Minnesota's State Hospitals. This condensed version describes the changes that have taken place in Minnesota over the past two decades in terms of reducing the numbers of people served by state hospitals. "There is increasing awareness that the system continues to change and that the changes directly affect the lives of patients, residents, employees and communities," the report stated. This report is intended to assist the 1985 Legislature in the decision-making process. These decisions will directly influence the levels of services offered for people with mental illness, mental retardation and chemical dependency. Copies have been sent to those on the Policy Analysis Series mailing list. Copies may be requested from: Developmental Disabilities Program, State Planning Agency, 201 Capitol Square Bldg., 550 Cedar St., St. Paul, Minn. 55101. Tel. (612) 296-4018. Governor Withdraws Recommendation to Close Schools for Blind and Deaf Students On Jan. 3, 1985, Governor Rudy Perpich made a preliminary recommendation to close the Minnesota School for the Deaf and Braille and Sight Saving School located in Faribault. At the same time, he requested the State Planning Agency (SPA) to complete an analysis of the impact this proposal would have on the students involved. By mid February, after considerable response from legislators, parents, teachers and students (including a demonstration in the Capitol Rotunda), the Governor withdrew his recommendation to close the schools. SPA's analysis consisted of: a) a review of every student record, b) a survey of students, c) a survey of parents and d) a survey of home district special education directors. The surveys of students and families documented universal opposition to the proposed closure. Given a choice, the parents would prefer to keep the schools open, but many would have considered out-of state residential schools in the event of Faribault Schools (Continued) closure. Local special education directors expressed concern about closure without following due process procedures. In the event of closure, the local directors preferred placement in the home districts followed by placement in another district with students with similar disabilities. The residential schools in Faribault were described by the respondents ~n terms of educational quality, opportunity for socialization, involvement in extracurricular activities, and an environment conducive to total communication. Issues relating to quality of local programs emerged from the surveys, letters and phone calls. These issues included the need for qualified personnel (especially in rural areas), the difficulties in providing appropriate educational programs tailored to individual needs, and the need to thoroughly review such programs in all school settings. Copies of SPA's summary report to the Governor may be requested from: Developmental Disabilities, SPA, 550 Cedar St., St. Paul, Minn. 55101. Tel. (612) 2964018. GOVERNOR APPOINTS NEW MEMBERS TO PLANNING COUNCIL ON DEVELOPMENTAL DISABILITIES Several new members have been appointed to the Governor's Planning Council on Developmental Disabilities. The following persons will be serving three-year terms: --Suzanne Dotson (Minneapolis, program coordinator, Midwest Special Services, Inc., St. Paul; --Sandra J. Fink (Ramsey, Minn.) early childhood coordinator, Sherburne and Northern Wright County Special Education Cooperative; --Paul H. Johnson (Redwood Falls), parent, President of Association for Retarded Citizens, Redwood County; --Gerald Nelson (Minnetonka) executive director of Minnesota Foundation for Better Hearing and Speech; --Janet Rubenstein (Minneapolis) program director of United Cerebral Palsy of Minnesota; Council Appointments (Continued) Two additional members were reappointed to the Council: --Douglas Butler (Rochester) executive director of Hiawatha Homes, Inc.; and --Ruth Rafteseth (Crookston), parent, employed with the Polk County Probation Office. Council meetings are held on the first Wednesday of every even-numbered month from 12 noon to 2:30 p.m. The next meeting is scheduled for Apr. 3, 1985 at the Earle Brown Continuing Education Center. These meetings are open to the public. For additional information, contact Audrey Clasemann at (612) 296-4018. Joan Schospke Nominated for Volunteer recognition Award The Governor's Planning Council on Developmental Disabilities has nominated Joan Sthoepke of Bloomington to receive national recognition for her services to people with autism. Commissioner Jean Elder, Administration on Developmental Disabilities (ADD), Department of Health and Human Services, will present a Volunteer Recognition Award to Joan at the ADD National Forum in Dallas, Texas, March 12-14. Joan's son has autism. When she became president of the Board of Directors of the Twin Cities Society for Autistic Children and Adults in 1974, there were very few services available to people with autism. It has been through her leadership and the combined thoughts and efforts of many of her colleagues that there are now considerably more opportunities and services available. Some of the services are: special education, adaptive recreation, vocational training and employment, parent support groups, clinical services and alternative living programs in community settings. When asked what message she might want to share with other parents and volunteers, Joan stressed, "It's important for parents to begin specialized training early when their children are young, but they should realize that it's really a life-long commitment. There's always 'something else' to work on to to advocate for." HOME CARE SHOULD BE VIEWED AS FlRST OPTION, REPORT CONCLUDES "Long term care for the elderly has increasingly become a crucial issue facing the state of Minnesota" begins a report on Home Care in Minnesota: Issues and Future Directions, which was recently released by the Health Policy Analysis Group, Center for Health Services Research, University of Minnesota. "With...the expansion of home care services," the report continues, "we have begun to move away from the idea that home care is an 'alternative' to nursing home placement. Instead, home care is starting to be viewed as the first option for long-term care rather than a secondary choice." Approximately 45,000 Minnesotans over 65 years of age reside in institutions. Sixty percent of these individuals are recipients of Medicaid. Minnesota has one of the highest proportions of its Medicaid budget allocated to nursing home care and almost double the institutional rate in the nation as a whole. While the national average shows under five percent of the elderly institutionalized, Minnesota's rate is over nine percent. Approximately $600 million (federal and state) are spent on institutional care and $50 million are spent for home care for elderly persons in Minnesota each year. The report concludes that long-term care should be viewed as a continuum that includes all the types and settings of care that are appropriate for different people. Essential ingredients needed are: adequate funding, assessment of needs, and ongoing case management services. Also needed for further development of home care services are: adoption of standards for licensure of home care agencies, monitoring of growth, and improvement of data collection systems. Copies of the report may be obtained from: [ Moscovice, Ph.D., Director Health Policy Analysis Group, Center For Health Services Research, University of Minnesota, 420 SE Delaware St., Box 729, Minneapolis, Minn. 55455. Tel. (612) 376-1895. YEARNING FOR LEARNING The state Developmental Disabilities (DD) Program Office has acquired several education, training and resource materials. THE FOLLOWING MATERIALS MAY BE BORROWED FROM THE STATE OFFICE ONLY, LOCATED AT THE FRONT SHEET OF THE BLUE SECTION OF THIS NEWSLETTER. Handbook for Job Placement of Mentally Retarded Workers: Training, Opportunities, and Career Areas. A. M. Jacobs, J. K. Larsen, C. A. Smith, Academic Guild, 1979. This is the third, revised edition of the Guide to Jobs for the mentally Retarded. This handbook is a reference manual designed to be used on a day-to-day basis by training and placement personnel. Rather than trying to mold the individual into specific jobs, it emphasizes the -concept of Jobs to fit people. Over eight thousand possible job placements are identified and profiled. A Management System Approach to Teaching Independent Living Skills and Managing ~ ~. BM, 1978. This manual provides a set of procedures that are designed to be used as an integrated, four-component treatment system: administrative/ management, data tracking, staff training, and client training. Field tested, reliable procedures are provided for implementing effective therapeutic environments. Because most problems in habilltation programs are staff related, the author emphasizes staff organization, training, management and reinforcement. Published monthly by the Developmental Disabilities Program of the Metropolitan Council Metropolitan Council 300 Metro Square Building St. Paul, Minnesota 55101 Toni Lippert: 291-6364 Terrence Kayser: 291-6356 April 1985 Vol. 10. No. 4. You are invited to hear Edward R. Skarnulis, Ph.D. speak at a public forum sponsored by by the Metropolitan Council's Developmental Disabilities Advisory Committee. Dr. Skarnulis is the new Director of Mental Retardation Services, Minnesota Department of Human Services. The forum will begin at 2:30 p.m. on Tuesday, April 9, 1985, in the Metropolitan Council Chambers, Seventh and Robert Streets in St. Paul, Minn. The forum is open to the public. METRO DD PROGRAM NEWS Advisory Committee Members Wins National Volunteer Honor Joan Schoepke of Bloomington has won the Volunteer Recognition Award, a national honor given by the Administration on Developmental Disabilities of the U.S. Department of Health and Human Services. Schoepke, the mother of a son with autism, is a former president of the Twin Cities Society for Children and Adults with Autism. She has been a member of its board of directors since 1974. As a result of the group's advocacy work, there has been significant improvement and expansion of the educational and recreational services available to children with autism and their parents in the Twin Cities Area. Schoepke said her work has taught her the importance of coalition building. "There is strength in numbers, and when advocating for service, it's very helpful to have the support of others in need of the same services," she said. In addition to her work for the society, Schoepke has served on many task forces and committees in the region, including the Bloomington Public School's Task force on the Emotionally Disturbed, and the Metropolitan Council's Developmental Disabilities Advisory Committee. Publications Copies of an article "Vocational Training and Employment: Guidelines for Parents" by M. Sherril Moon and Andrew V. Beale that was published in a recent issue of The Exceptional Parent magazine, is available to our readers. This article outlines steps that should be taken by parents during a child's school years to ensure that he or she receives the proper kind of vocational training and job placement. To obtain a free copy, call the Developmental Disabilities Program at (612) 291-6363 or write, Developmental Disabilities Program, Metropolitan Council, 7th and Robert Streets, St.Paul, Minn. 55101. State Hospital Study This study of Minnesota's state hospitals was requested by the 1984 Legislature which asked that a comprehensive study be made on the following topics: --Projected displacement of state hospital employees because of deinstitutionalization by number, location, and job classification; --The extent to which displacement can be mitigated through attrition, retirement, retraining and transfer; State Hospital Study (Continued) --The development of cooperative arrangements between the state and local units of government in the carrying out of these goals; --The necessary changes in the biennial budget to effect any fiscal and policy recommendations of the plan; --The necessary interagency agreements among and between appropriate departments and agencies as needed to effect recommendations contained in the plan; and --The energy efficiency of all state hospital buildings. The Legislature also directed that a plan be developed that would protect the general interests of employees and communities affected by the reduction of state hospital population and specifying methods for assuring minimal impact on the economic life of communities affected by the changes. These actions by the Legislature were based on a recognition that "closure and consolidation of state hospitals have negative economic effects upon the public employees and communities." Copies of the summary-report may be obtained from the Metropolitan Council's DD Program. Call (612) 291-6363 for further information. EMPLOYMENT OPPORTUNITIES Job Coaches Needed Persons interested in becoming paid job coaches for the Metropolitan Council's developmental disability Community Work Training Project are invited to call Terrence Kayser at (612) 291-6356. Irregular hours; $4.75 - $6 per hour. Program Staff Needed Program staff needed part-time or full-time evenings in new waivered-service apartment program in St. Paul. Prefer persons experienced in implementation of skill-building programs. S6 per hour. Send resume. to Gerald Glomb, 1081 Fairmount Av., St. Paul, Minn. 55101. Tel. (612) 292-1929. RECREATIONAL OPPORTUNITIES Free music, art, dance and drama workshops are offered by Courage Center's Life Enrichment Program. April classes include: --sculpture on April 2, 10 a.m. - noon at the 2100 Bloomington apartments in Minneapolis, and on April 9, 10 a.m. - noon at the Seward Square apartments, also in Minneapolis; --art on April 15, 1 - 3 p.m. at 2100 Bloomington; --art workshop, April 16, 1-3 p.m. at the Holmes Greenway apartments in Minneapolis; --radio drama on Apri1 18 and April 25, 7-9 p.m. at 2100 Bloomington; --Orama/theatre, April 20, 1-3 p.m. at Seward Square; and --dance/movement on Apri1 27, 1-3 p.m. at 2100 Bloomington. Pre-registration is encouraged for all classes. For more Information, contact Cindy Raynor at (612) 588-0811. These activities are made possible in part by grant provided by the Metropolitan Council/Regional Arts Council from funds appropriated by the Minnesota State Legislature. Summer Camp Registrations for summer camping programs for children and adults with mental retardation are currently being accepted at Eden Wood (formerly Indian Chief Camp) in Eden Pralrie. The camp is operated by the Association for Retarded Citizens (M C) of Hennepin County, and offers enriching outdoor experiences through a variety of theme camps like Theater in the Woods, Leisure Specialties, Kids' Week, Sports and Health and Family Camp Weekends. Offsite programs to the Boundwary Waters Canoe Area an'd state parks are also offered. Most sessions run for five days with weekend programs available for families. Fees range from $lO-$190, with camperships available to qualified applicants. Summer Camp (Continued) Registrations material and further information can be obtained by calling the ARC office at (612) 874-6650. FOR YOUR INFORMATION Metropolitan Council Offers Internships The Metropolitan has paid summer internships available in its programs in housing and transportation planning, communications, graphics, arts administration and its Housing Redevelopment Authority. Applicants must be enrolled in an academic programs and persons with handicaps are encouraged to apply. For more information about this program, contact Liz Newberry, Equal Oppportunity Coordinator, (612) 291-6575. Training for Support Group Offered The Department of Human Services will offer a "family support" training session ,or providers of home care for frail or disabled adults on May 16 and 17 at McGuire's Inn located in Arden Hills. The cost is approximately $50, including meals and a manual. Participants will learn how to establish education and support groups for caregivers and will expand their skills in facilitating support groups of all kinds. Trainers are from the Wilder Senior Resource program and the Department of Human Services and Oepartment of Health. For more information and registration materials, call the staff development division at (612) 297-1216 or 296-6626. Practicum/Seminar in Autism Offered An intensive practicum/seminar in the education of children with autism is offered July 27 - August 3, and August 3 10 for a wide range of professionals in Special Education, Communication Disorders, Psychology, Residential and Suman Services, Recreational, Music and ccupational Therapy. Seminar (Continued) The practicum/seminar will be held in conjunction with Camp Hand in Hand, a residential camp for children with autism, 7 to 21 years of age. Participants in the seminar will reside at the camp, Wilder Forest, Marine on St. Croux, near Stillwater where they will gain valuable experience in a dual role as practicum student/counselor. The cost is $100, with room and board provided. Scholarships for the cost of the practicum are available to interested applicants selected by June 1. For applications and curriculum content, contact Phil Sievers, 1729 Carroll Av., St. Paul, Minn. 55104; (612) 642-9042. Police Chief to be Keynote Speaker at Conference Anthony (Tony) Bouza, chief of police of the Minneapolis Police will be the keynote speaker at the Metro-Wide Conference sponsored by Anoka, Dakota, Ramsey and Hennepin County Associations for Retarded Citizens. This is a conference for people with a developmental delay or mental retardation.Chief Bouza will speak from 12:30 - 1:15 p.m. The conference will be held on April 20, 11:00 a.m. - 10 p.m. at the Anoka Area Vocational Technical Institute, 1355 W. Main St. Anoka, Minn. The conference fee is $10 which includes lunch and dinner, all speakers and workshops, and a live band for dancing. For more information, contact the ARC of Hennepin County at (612) 874-6650. Registration must be made by April 12. Family Education Series Offered The Parent Services Program of the Association for Retarded Citizens of St. Paul is offering the following programs during April. "Wills, Trusts and Guardianship" will be offered on Friday, April 12, from 7:30 p.m. to 9:30 p.m. John LeMay, a St. Paul attorney and Steve Scott, attorney with Legal Advocacy for the Developmentally Family Education Series (Continued) Disabled will be the speakers. A new booklet, "How to Provide for Their Future" will be sold at the meeting. Cost of the booklet is $2. "Leaving Home" will be presented by John Buck, Ph.D., psychologist, Jan Huizenga, supervisor at Ramsey County Social Services, Lee Slagter, director at BeeDale, Inc., and a panel of parents who have recently placed a family member. Both programs will be held at the Arlington Hills Presbyterian Church, 1275 E. Magnolia Av., St. Paul. The fee is $2 for each evening or ability to pay. To register, call the ARC office at (612) 224-3301. Nominations Requested for "Distinguished Parent" The Association for Persons with Severe Handicaps (TASH) is requesting nominations for their "Distinguished Parent" award. To be eligible, parents must be the legal, natural or foster parents of children with severe disabilities and cannot be professionals in the field of special education. Furthermore, nominees should have made consistent efforts to assist their children in living full lives in their communites--efforts that have aff ected the lives of other children as well, on a local, regional, state or national level. Nominations must be received by May 27. Forms may be requested from the TASH o ff ice at 7010 Roosevelt Way NE., Seattle, Wash. 98115. Nominations called for by Association of Retarded Citizens Minnesota The awards commitee of the Association for Retarded Citizens Minnesota (ARC) is calling for nominations of individuals or organizations for awards recognizing services to persons with mental retardation. ARC Awards (Continued) The deadline for nominations is May 1 Awards will be presented at the ARC Minnesota state covention to be held August 16-18 in Duluth. For more information contact ARC at (612) 827-5641, or out-state toll-free, (800) 582-5256. Start-Up Loans Offered For New Waivered Services The Association for Retarded Citizens of Hennepin (ARC) has approximately 532,500 available in low-interest loans for startup costs of new waivered services. For details and application materials, call ARC Hennepin County at (612) 8746650. WORKSHOPS/CONFERENCES April 20 The Sixth Annual Metro-Wide Consumer Conference will be held at the Anoka Area Vocational-Technical Institute from 11 a.m. - 10 p.m. Deadline for registration is April 12. For more information contact the Associatlon for Retarded Citizens in Hennepin County at (612) 874-6650. May 14, 15 and 16 The 15th Annual Spring Conference of the Association for Residences for the Retarded in Minnesota (ARRM) will be at the Sheraton Park Place with the kickoff on May 14 from 7 -9 p.m. The theme for the conference is ~Issue: A Point of Debate or Controversy...Can We Talk?" For a registration form and information on costs, contact ARRM at 1885 University Av., St. Paul, 55204. Tel. (612) 6448181. -4 INFORMATION EXCHANGE STATE SUPPLEMENT Developmenbl Disabilities Program 201 Capitol Square Building 660 Cedar Street St. Paul, Minnesota 66101 Minnesota State Planning Agency Roger Strand 612/2964018 Editor BUDGET CUTS PLUS fREEZE EQUAL NEGATIVE EFFECTS On Feb. 4, 1985, President Reagan submitted his fiscal year 1986 budget request to Congress. The President seeks to cut, eliminate, or freeze programs in the areas of education, social security, housing, health, prevention, research, employment, rehabilitation and legal services, among others. The Administration's proposals have been analyzed by the Consortium for Citizens with Oevelopmental Disabilities (CCDD), consisting of forty national agencies. The consortium report concluded that, "the President's budget is focused on reducing federal spending, often without regard to the effect such 'savings' will h~ve on the lives of persons with developmental disabilities." Some of the President's proposals include the following: --Vocational Rehabilitation: State grants would be frozen and discretionary programs cut by S17 million (including elimination of the Recreation program, Part A funding for Independent Living Services, and reduced funding for Projects with Industry, Evaluation and Training. --Developmental Disabilities: The Basic Grants, Protection and Advocacy and University Affiliated Facilities programs would be frozen, while the Special Projects Program ($2.7 million in 1985, administered by the federal Administration on Developmental Disabilities) would be eliminated. --Medicaid:- A S1.3 billion reduction is estimated for FY86 and transition to a capped program will be attempted through legislation that the Administration has announced it will introduce. BUDGET CUTS (Continued) --Education: P.L. 94-142 would be frozen and $11 million would be cut for personnel development in special education. --Housing: There would be a two-year moratorium (no new funding) on Housing and Urban Development (HUD), Section 202 program as well as Section 8 assisted housing program. --Employment: The Job Training Partnership Act (JTPA) would be level. funded while the National Activities Pilots and Demonstration programs would be eliminated. --Legal Services Corporation: This program would be eliminated-. --Prevention and Research: The immunization program would be frozen. The National Institute of Health and the National Institute of Mental Health were targeted-for cuts of $287 million and $40 million, respectively. --Health and Social Services: Funding for Title XX--Social Services, Preventive Health, Maternal and Child Health--and Alcohol, Drug and Abuse Mental- Health programs would be maintained at FY'85 levels. Congress, through its "money" committees (i.e. Budget, Ways and Means, Finance and Appropriations) will be pursuing its budget process during the months ahead. An excellent summary of the President's proposed budget and the budget process is contained in ARC Government Report. Feb. 15, 1985. Copies may be requested from: Developmental Disabilities Program, State Planning Agency, 201 Capitol Square Bldg., 550 Cedar St., St. Paul, Minn. 55101. Tel. (612) 296-4018. STUDY OF PUBLIC GUARDIANSHIP PROGRAM PROPOSED "Minnesota has had a State Guardianship Program for persons with mental retardation since 1917. During the 1970s, there were as many as 15,000 persons who were 'wards of the state.' There are now approximately 7,000 mentally retarded people under public guardianship or conservatorship." These observations were made by Kay Hendrikson during a recent interview. She is the newly appointed administrator of the State Guardianship Program in the Department of Human Services. "Minnesota, like several other states, is preparing for a thorough review of the guardianship program--how it might be improved and how we can better address the needs of clients," Hendrikson stated. There is now a bill (S.F.545) before the Legislature that proposes to establish a task force to study public guardianship under M.S. 252A, The Mental Retardation Protection Act. Task force members would consist of representatives from counties, state agencies and councils, attorneys and advocates for elderly people and persons with mental retardation, chemical dependency and mental illness. The proposed task force would collect information on the number of people and their place of residence, amount of staff resources available, duties of the case manager and the types of disabilities of people who are under public guardianship. The bill also outlines certain areas for task force recommendations: --The extent to which need for protective services are not being met; --The feasibility and economic impact of extending public guardianship to persons with other disabilities; --The success of protective service models used in other states; --Methods to improve accountability and increase visits to persons under public guardianship; and --The feasibility of alternatives to the present public guardianship system. PUBLIC GUARDIANSHIP PROGRAM (Continued) "Some of our immediate plans and activities," continued Hendrikson, "are to listen to the county social service workers, define issues and problems, and to take action toward problem resolution." In-service training sessions will be held this summer for case managers, and an operational manual or guide will be developed. A communication network is being established with other states who share similar interests. "I see my new role," concluded Hendrikson, "as listening, organizing and setting up administrative procedures that will facilitate and maximize client functioning. It will take a team effort on the part of the state office and the counties." HELP SPREAD THE WORO ABOUT HEPATITIS B-IT CAN BE PREVENTED A single sheet flyer is now available from the Assocaion for Retarded Citizens, National, entitled, "Facts about Hepatitis B," written by Linda Weber. Hepatitis B is an inflammation of the liver caused by the hepatitis B virus. Each year, 200,000 new cases are reported. Less than half of these cases show symptoms such as jaundice, (yellowing of the skin), poor appetite, weight loss and dark urine. Twenty percent of the persons require hospitalization. One person in one thousand will die due to direct consequences of this disease. People known to be at high risk of catching hepatitis B are immigrants, users of drugs (through injection), homosexuals, and institutionalized persons with mental retardation. Studies revealed that hepatitis B is found more frequently in congregate living situations, especially where conditions are crowded and unsanitary. for unknown reasons, people with Oown Syndrome are at higher risk of catching and of being carriers of hepatitis B. -6 HEPATITIS (Continued) It is important to know that hepatitis B can be prevented by means of several personal hygiene practicies and through use of a vaccine known as Heptavax-8. Guidance from a physician is strongly advised when planning a prevention program. To learn more about how hepatitis is spread, detected, prevented, and how you can help educate others, contact: Association for Retarded Citizens, National Headquarters, 2501 Avenue J, Arlington, Texas 76006. Tel. (817) 640-0204. NATIONAL PROJECT TO FOSTER COMMUNITY INTEGRATION The National Institute on Handicapped Research (NIHR) has awarded a threeyear contract to Syracuse University to provide technical assistance to states and communities on developing integrated community programs for people with the most severe disabilities. For further information, contact: Community Integration Project, Center on Human Policy, Syracuse University, 4E Huntington Hall, Syracuse, New York 13210. Tel. (315) 423-3851. BEHAVIOR ANALYST CERTIFICATE PROGRAM OFFERED The University of Minneota is offering a series of courses that lead toward certification in "Behavior Analyst in Community Environments." Applicants should already hold a Bachelor's or Master's Degree in psychology, sociology, social work, nursing, or related disciplines. Applicants should also have a strong interest in working directly with children and adults who have disabilities. The deadline for admissions is May 31, 1985, (admissions taken only once a year). Contact: Extension Counseling Office, 314 Nolte Center, 315 Pillsbury Dr. SE., University ~f Minnesota, Minneapolis, Minn. Tel. (612) 373-3905. MODEL "BABY DOE" PROCEDURES TO BE DEVELOPED The American Bar Association (ABA) has been awarded a grant from the Department of Health and Human Services to help states develop model procedures for child protective agencies. ABA staff is seeking information from states about existing procedures to protect disabled infants. Contact: Bruce Nicholson, ABA, 1800 M Street NW., Washington, DC 20036. Tel. (202) 3312235. HUMAN SERYICE WORKSHOP SCHEDULED IN ROCHESTER The University of Minnesota, Rochester Center, has announced the following workshops: --April 4: Dealing with Anger in Modern Society: "Things are Squarely Unfair." --April 10: Performance Appraisal and Interviewing. --April 18. Working with Families in Transition. --April 24: Maximizing Self-Respect and Encouragment in Self and Others. --April 25: Developing Personnel Policies. --May 8: Professional Risk Taking. For further information, contact: Beryl Byman, Program Director, University of Minnesota, Rochester Center, 1200 S. Broadway, Rochester, Minn. 55904. Tel. (507) 288-4584 or (612) 224-3106. EVENT Apri1 24-26 "Model Programs and New Technologies for People with Disabilities: A National ConferenceU will be sponsored by the Young Adult Institute, to be held in New York City. Contact: Young Adult Institute, 460 West 34th St., New York, NY 10001. Tel. (212) 563-7474. YEARNING FOR LEARNING The State Developmental Disabilities (DO Program Office has acquired several education, training and resource materials. THE FOLLOWING MATERIALS MAY BE BORROWED FROM THE STATE OFFICE ONLY, LOCATED AT THE ADDRESS ON THE FRONT SHEET OF THE BLUE SECTIDN OF THIS NEWSLETTER. TEL. (61Z) 296-4018. Action through Advocacy: A Manual for Training Volunteers, Texas Tech Untversity, 1980. This manual provides a curriculum for training volunteer advocates who have direct relationships with people who have a developmental disability. Training of "citizen advocates~ covers knowledge about developmental disabilities, the advocate's role, attitudes, communication, assertiveness, and taking action for change. Curriculum flexibility allows the trainer to individualize the content and activities according to the needs and purpose of the advocacy program. Family Cooperative Respite Demonstration Program: Parents as Respite Caregivers (A Training Manual), United Cerebral Palsy Association of Nassau County, Inc., Roosevelt, New York, 1985. This training manual was the result of a project funded by the Office of Human Development Services. The respite care project was designed to meet the following criteria: 1) flexible hours; 2) allow for short vacations; 3) take place in accessible, convenient locations; 4) little or no cost to families; and S) quality care and supervision of the person with a - disability. Training content includes: first aid, lifting, positioning, dressing, bathing, toileting, feeding, communication and programming for leisure time. INFORMATION EXCHANGE Published monthly by the Developmental Disabilities Program of the Metropolitan Council Metropolitan Council 300 Metro Square Building St. Paul, Minnesota 55101 Toni Lippert: 291-6364 Terrence Kayser: 291-6356 METRO DD PROGRAM NEWS Addition to Curriculum Library Liability Issues in Community-Based Programs, by Alan VanBierviiet and Jan Sheldon-Wildgen is a guide to legal liability issues facing persons who are developing, operating or monitoring community-based residential or day training agencies that serve physically or mentally impaired persons. However, the authors caution readers that if agencies are seeking legal advice or expert interpretation of the law, an attorney or other professional advocate should be consulted. This book and other publications may be borrowed by Metropolitan Area residents for three weeks. They must be picked up and returned in person. Borrowers are liable for costs of materials if they are damaged or lost. Call 291-6363 for further information. MISCELLANOUS New Assistant Commissioner Named William Niederloh has been named assistant commissioner for the Division of Vocational Rehabilitation (DYR) by Commissioner Barbara Beehalter of the Department of Economic Security. Niederloh has been acting assistant commissioner since September 1984. Prior to that time he served as director of the DYR Client Services office. From 1969 to 1977, Niederloh was responsible for the DYR Rehabilitation Facilities Office. May 1985 Vol 10. No. 5. LAST 'CALL FOR PAPERS' May 15 is the deadline for the Call for Papers/Presentations for the Minnesota Organizations's 1985 Joint Conference. The conference, which will be held in Bloomington on Oct. 24 and 25, has over 20 organizations as sponsors. It is anticipated that there will be a wide variety of topics included in the presentations, but with emphasis on cooperative activities between organizations and/or agencies. Copies of the Call for Papers/Presentations form can be obtained by calling the Metropolitan Council DD Program at (612) 291-6363. EMPLOYMENT OPPORTUNITY Administrator Needed Administrator needed for a 20-bed Intermediate Care Facility for adults with mental retardation. Person must be a Qualified Mental Retardation Professional (QMRP) and experienced in working with people with mental retardation. Applicants must have supervisory skills and ability to work with the county and state human service agencies and have proven administrative abilities needed to develop new services and maintain current ones. Salary $18-24,000. Phone or send resume to Susan Krueger, Personnel, Friendship Haven, Box 576, Sherburn, 56171. Tel. (507) 764-2391. Applications must be received by May 15. Program Coordinator Needed A program coordinator is needed for an eight-bed intermediate care facility serving persons with mental impairment or with mental retardation. A person with a degree, behavioral expertise and experience is preferred. Send resume to Dan McNally, Rt. 2., Box 302B, Lindstrom, Minn. 55045, or call (612) 257-1686. Salary to be commensurate with experience. RESOURCES Directory Available The 1985-86 "First Call for Help Directory of Community Services,U published by the United Way of Minneapolis Area, is now available. The new edition includes information on more than 700 Metropolitan Area agencies offering health, recreational, educational and social services. The directories are S9, plus S1.25 postage and may be ordered from: first Call for Help, 404 S. 8th St., Minneapolis, MN 55404. Tel. (619) 3407431. Foundation-Related Material Available at Local Libraries For agencies interested in foundation giving, the Minneapolis, St. Paul, Duluth and Rochester downtown public libraries and the Southwest State Library in Marshall house collections of foundation-related materials connected with the New York-based Foundation Center. The Foundation Center is a national service organization established and supported by foundations. It provides a single, authoritative source of information on foundation-giving. Brochures Available Supervising Handicapped Employees and Working with Handicapped Employees are guides for supervisors and coworkers in worksites that include handicapped Brochures (Continued) employees. The two new companion brochures offer clear, concise guidance-not hard and fast rules--for dealing with concerns expressed by employers and coworkers. The brochures were designed by the Worksite Committee of the President's Committee on Employment of the Handicapped, which is engaged in ways to make the worksite accommodating to people with disabilities. Single copies of the brochure are available at no cost from: President's Committee on Employment of the Handicapped, 1111 20th St. NW., Washington, DC 20036. Tel. (202) 653-5024. Pamphlet Outlines Safety Rules for Children with Disabilities A pamphlet "Protect Your Disabled Child" has been published jointly by the Office of Special Education and Rehabilitative Service and ACTION, the national volunteer agency. The pamphlet identifies safety rules that parents can teach their disabled children to promote prevention of abduction and exploitation. Copies of the brochure are available by contacting ACTION, Child Safety Program, Washington, DC 20525. Tel. (800) 424-8867. Cooperative Agreement Awarded for National Information Center The National Information Center for Handicapped Children and Youth (NICHCY) has been funded for the next three years through a cooperative agreement between Interstate Reseach Association, Rosslyn, VA and the Department of Education, Special Education Programs. The National Information Center is a free information service that helps parents, educators, care-givers, advocates and others to improve the lives of children and youth with handicaps. It was established as part of The Education of the Handicapped National Information Center (P.L. 94-142 as amended by P.L 98-199) to ensure that accurate, timely information is available to everyone in the country who requests it. Successes should also be shared with NICHCY. When a project or program or new way of doing things proves especially effective, people should spread the good news. NICHCY collects this good news and shares it with others who are facing similar problems. To be part of this network, write to NICHCY, P.O. Box 1942, Washington, DC 20013. SERVICES New Cleaning Service "Grime Stoppers" is a cleaning service that employs only persons who are mentally retarded. The service was begun in January and Qffers services to homes, offices and apartments in the Metro Area. Services include threeperson teams which are contracted for at j25 per~hour for a three-hour minimum. The one-time cleaning rate is $30 per hour for a three-person team with a threehour minimum. For more information, call Sandy at (612) 452-6673, or Joan at (612) 699-7467. Free Screening Clinic Offered Gillette Children's Hospital offers a free monthly screening clinic for children with possible bone, joint or muscle problems. The clinic is especially useful for parents or school personnel who suspect a child may have difficulty using his or her arms, legs or back. The free orthopedic clinic is held the second Friday afternoon of each month. The next clinic is scheduled for May 10. Any young person through the age Free Clinic (Continued) of 21 who lives in the Twin Cities may make an appointment. To register, call Mary Conroy at (612) 291-28948, ext. 147. FOR YOUR INFORMATION TRANSPORTATION FUNDS AVAILABLE Under the provisions of Section 16(b) (2) of the Urban Mass Transportation Act of 1964, as amended, capital assistance grant funds are available to private, non-profit corporations and associations for the purchase of equipment and facilities for use in transporting handicapped and elderly persons. The primary objective of this Transportation Grant Program is to meet the special needs of elderly and handicapped persons for whom existing mass transportation services are unavailable, insufficient, or inappropriate. No operating funds are available under this program. It has been the policy of the Minnesota Department of Transportation to use 16(b)(2) funds solely for the purchase of liftequipped vans and buses. Grants are made for replacement of vehicles, for expansion of current services, or for initiation of new services. Applications are due by June 7, 1985. For additional information or to obtain an application, contact: Dennis McMann, 16(b)(2) Program Coordinator, Office of Transit, 815 Transportation Bldg., St. Paul, Minn. 55155; tel. t612) 2972067. 1985 Epilepsy Lecture Series New opportunities for epilepsy education and support are offered through the Epilepsy Foundation of Minnesota's 1985 monthly lecture series. Professionals from the Metro Area have volunteered their expertise -3- Epilepsy Series (Continued) on such topics as medical aspects, intimate relationships and communities resources. "Medications--How do they work? Side Effects" will be offered on May 15, and "Psychosocial-Aspects of Epilepsy" on June 19. Anyone is welcome to attend the lectures. Following the program, support groups will meet for persons with epilepsy, parents and other concerned people. There is no charge for the series, however, donations are accepted to help meet costs. The lectures begin at 7 p.m. with the support groups meeting at 8:15 p.m. They are held in the McKnight room of the Citizens Aid Building at 404 S. 8th Street in Minneapolis. For more information, contact Jackie Ulrich with the Epilepsy Foundation of Minnesota. Tel. (612) 646-8675. Community Living Awareness Week The Association of Residences for the Retarded in Minnesota announce the second annual art show which will high,lght Community Living Awareness Week. The art show is open to all developmentally disabled individuals residing in Minnesota. Art categories are painting, drawing and sculpture, and all works submitted must be original. Entries will be accepted July 1 - 31st at 1885 University Av., St. Paul, Minn. 55104. The art show will be on display October 6 - 31, 1985. For more information, call the ARRM office at (612) 544-8181. RECREATIONAL ACTIVITIES Overnight Camping Offered Camp Ozawizeniba for Children with Epilepsy will hold its third annual session from June 17-22. This is an overnight camp and is held at YMCA Camp Iduhapi, 22 miles west of Minneapolis. It is Jointly sponsored by the Minnesota Comprehensive Epilepsy Program, The Epilepsy Foundation of Minnesota and Gillette Children's Hospital. For further information, contact Vicki Florine at (612) 376-5021, or call tollfree, 1 (800) 292-7932. Interpreted Performances Offered May 5-- Chimera Theatre, St. Paul, 7 p.m. "Knock Knock", and May 16- 8 p.m. "Amadeus," May 22- Childrens Theatre, Minneapolis, 10 a.m., "Penrod," and May 31- 7:30 p.m. "Penrod." WORKSHOPS, CONFERENCES May 27-31 The American Association on Mental Deficiency ( MMD) announced its 109th Annual Meeting will be held at the Wyndham Franklin Plaza Hotel in Philadephia. The meeting will offer special courses, debate groups, seminars, workshops, exhibits, poster sessions and a film theater. Plenary sessions will cover "Rights and Responsiblities in Mental Retardation" and ~Right to Prevention." A preliminary program, registration and housing forms are available from M MD, 1719 Kalorama Rd. N.W., Washington, DC 20009. Tel. (800) 424-3688. INFORMATION EXCHANGE STATE SUPPLMENT Developmental Disabilities Program 201 Capitol Square Building 550 Cedar Street St. Paul, Minnesota 55101 May 1985 "PEOPLE ARE BETTER OFF" PENNHURST STUDY PROCLAIMS Conclusions drawn from a five-year longitudinal study of people who have left the Pennhurst State School and Hospital (Pennsylvania) revealed: --"We have found, by every scientific design and test available, that people who have gone to community living arrangements (CLAs) are better off." --"They have made more progress than similar people still at Pennhurst, and more than they themselves made during their prior time at Pennhurst." (The average length of residency at Pennhurst was 24 years.) --"These people have become better able to do things for themselves, rather than having things done for them." --"We also found that the people who seem to make the greatest gain in adaptive behavior tend to be those who start out the lowest. That is, the people with the most severe impairments turn out to be among those who benefit the most from community placement." These and many other observations are included in a comprehensive report entitled The Pennhurst Longitudinal Study: Combinea Report of Five Years of Research and Analysis. The study was conducted as a collaborative effort by the Temple University Developmental Disabilities Center in Philadelphia and Human Research Institute in Boston. It was supported by the Oepartment of Health and Human Services. Pennhurst Study "Continued) It was in 1977 when U.S. District Court Judge Raymond Broderick issued his opinion in the Halderman v. Pennhurst State School and Hos?ital case. Not only did he rule Pennhurst to be incapable of providing constitutionally appropriate care and habilitation, but that people should be provided services in less restrictive settings in the community. "This decision has been considered by many as the most far-reaching legal event in the field of mental disabilities to date," the authors of tne study observed. One purpose of the Lonqitudinal Study was to explore the use of class act~on litigation as a tool for the reordering of services to persons with mental retardation. A second purpose was to assess the implementation of an extensive deinstitutionalization activity. The researchers observed the process to be much "like time-lapse photography--the litigation exposed the change process to see both the strengths and weaknesses of community-based care in strong relief." The "Executive Summary" report contains recommendations worthy of very careful study. They address: funding and fiscal policy; the design and administration of community service systems; capacity building; and the role of the courts. Copies of the Longitudinal Study report and Executive Summary may be obtained postpaid at $15 per copy, check payable to Temple University, Oevelopmental Disabilities Center, 9th floor, Ritter Hall Annex, Philadelphia, Penn. 19122. Attention: Kathy Ann Baus. -5- SENATOR CHAFEE INTRODUCES COMMUNITY AND FAMILY LIVING AMENDMENTS OF 1985 On April 3, Sen. John H. Chafee confining his efforts for Medicaid reform, called for a policy change at the federal level that "is long overdue.8 He introduced a modified version of his proposed amendments of 1983 (S. 2053), which had caused considerable controversy and debate. The current proposal, Community and Family Living Amendments of 1985 (S.873), is a bill to amend Title XIX of the Social Security Act to assist severely disabled individuals to attain or maintain their maximum potential for independence and capacity to participate in community and family life. In short, as Senator Chafee described, "This legislation is an attempt to encourage all states to move in the direction of allowing individuals with developmental d~sabilities to live in the community, eitner at home, on their own, or in a group home. Major provisions of the bill include: --A narrower definition of "a severely disabled individual," which would also include children and youths below age 21 with a primary diagnosis of mental illness; --A target date of the year 2000 for states to phase down institutions and create community-based service systems; --A grandfather clause that would include facilities of up to 15 beds and "cluster homes" (three homes which are adjacent to one another); --An allowance for states to spend 15 percent of Medicaid dollars to provide services to severely disabled individuals in facilities with over 15 beds, with the federal match being reduced by four percent per year for no more than ten years; and --Three mandated services: 1) protective intervention, 2) case management, and 3) individualIfamily support services (which would include non-medical personal assistance and respite care). Senator Chafee (Continued) The National Association of Developmental Disabilities Councils, which participated in the formulation of this bill, recently released a memorandum to the states encouraging people to express their views in writing to their state senators about this proposed legislation. Copies of the "Short Summary. of this bill may be obtained from: Developmental Disabilities Program, 201 Capitol Square Bldg., 550 Cedar St., St. Paul, Minn. 55101. Tel. (612) 296-4018. U.S. SENATE HOLDS HEARINGS ON CONDITIONS IN INSTITUTIONS Standards of care and treatment for mentally ill and mentally retarded residents of state institutions were under review in Senate hearings held April 1, 2 and 3. The hearings were a culmination of a six-month investigation by the staff of Sen. Lowell Weicker, Chairman of the Senate Subcommittee on the Handicapped. Sen. Weicker opened the hearings by releasing a 250-page report detailing the investigation's findings. Resulting from inspections of 31 facilities in 12 states, over 600 interviews and analysis of dozens of documents and reports, the staff report concluded that residents of many institutions live in "a climate of intimidation~ in facilities which Ufail to maintain decent living conditions." The report also concluded that both the Department of Justice and Human Services fail to monitor conditions adequately in institutions and ensure that residents' rights are protected. In calling for reform, Sen. Weicker said he would shortly be introducing legislation to establish a Bill of Rights and a Protection and Advocacy System for mentally ill persons as well as an independent certification and monitoring system for institutions that serve mentally disabled people. -6- Senate Hearinqs (Continued) Reports of the subcommittee's staff investigation are available from: U.S. Senate Subcommittee on the Handicapped, 113 Hart Senate Office Bldg., Washington, OC 20510. DD COUNCIL SEEKS TESTIMONY IN PUBLIC MEETINGS SCHEDULED IN JUNE In preparation for its Three-Year State Plan, the Governor's Planning Council on Developmental Disabilities is seeking public participation in 12 meetings that will be held throughout the state in June. The State Plan will describe the current status of services for persons with developmental disabilities. It will state objectives to be achieved during a three-year period from 1986 to 1989. The Plan will describe how over $400,000 per year of federal funds will be used for grants in one of the following four priority areas: 1) alternative community living services, 2) employment-related activities; 3) child development services and 4) case management services. All interested individuals and agency representatives are welcome to give ~estimony or submit letters addressing needs for one or more of the above priority areas. Testimony should be limited to three minutes, and a written copy should be made available. All public meetings will be held from 2 - 4 p.m. at the following locations: --June 4, Willmar, Community College, Campus Center, Blue Room; --June 5, Slayton, Court House, Meeting Room; --June 6, St. Cloud, St. Cloud State University, Atwood Memorial Center, Civic/Penney Room; --June 12, Mankato, Mankato State University, Wiecking Bldg., Rm. 356; --June 17, Hibbing, Hibbing Community College, Fine Arts Bldg., Room F, A.208; --June 18, Brainerd, Brainerd Community College, Bldg. One, Room 147; --June 18, Fergus Falls, Fergus Falls Community College, Administration Bldg., Room A-303; Public Meetinqs (Continued) --June 19, Crookston, University of Minnesota - Crookston, Dowell Hall, Rm. 128; --June 20, Bemidai, BemidJi State University, Bangsberg Bldg., Rm. 118; --June 24, Rochester, United Way Conference Center, 903 W. Center St., Conference Rooms A and B; --June 25, Duluth, Ordean Bldg., Conference Rooms A and B; and --June 27, St. Paul Capitol Square Bldg., 550 Cedar St., Conference Rooms A and B. For more information or to submit letters, write or call: Developmental Disabilities Program, 201 Capitol Square Bldg., 550 Cedar St., St. Paul, Minn. 55101. Attn: Ron Kaliszewski. Tel. (612) 297-3207. PATHFINDER NEWSLETTER INITIATED Quarterly news about the ne