Minnesota Governor's Planning Council on Developmental Disabilities
Minnesota Follow-up Study:
What Happens to Young Adults with Disabilities after High School?
Concern about what happens to youth with disabilities once they leave high school has been a national priority for the past several years. Interviews with 388 young adults with disabilities throughout Minnesota were conducted in the summer of 1993, and the results were recently published in 1994 Minnesota Post-school Follow-up Study, by the Institute on Community Integration, University of Minnesota, under contract with the Interagency ,office on Transition Services, Minnesota Department of Education.
The study was conducted in the following communities: Albert Lea, Duluth, Hopkins, Minneapolis, New Prague, Rochester, St. Cloud, Thief River Falls, Willmar, `and Windom. The former students interviewed had left high school between 1988 and 1992, and had been diagnosed with a primary disability in the following categories: learning disability (N= 148); emotional/behavioral disorder (N=55); mild mental impairment (N =95), and moderate/severe disability (N=90). Ninety-two percent of the individuals interviewed were high school graduates. Major findings of the study included:
Employment: Eighty percent of the young adults were employed; 50 per- cent in competitive jobs, 13 percent in supported employment, and 16 percent in sheltered employment. Among the 20 percent who were unemployed at the time of the interview, only 9 percent had never been employed. Those working in competitive jobs found work through personal contacts (i. e., self/family/ friend networks). Supported employment services were used primarily by youth in the mild mentally impaired and moderate/severe disability groups. A much larger percentage of young adults in the moderate/severe disability group (56 percent) worked in sheltered employment settings in comparison to the other groups.
Postsecondary Education and Training: Nineteen percent of the respondents (mostly individuals with learning disabilities) were enrolled in, or had completed, technical college, community college, or university/four year college, or an apprenticeship. However, most of the remaining respondents had never considered enrollment in postsecondary education and training programs.
Living Arrangements: Most young adults (62 percent) lived in their family homes, and very few participated in programs that prepare individuals to live on their own. Forty-one percent were on a waiting list for somewhere else to live. ~
Social Networks: Nearly two-thirds (66 percent) of the sample had social networks ranging from three to eight people. Young adults in the moderate severe disability group had the fewest number of personal friends in their social networks, but included more staff and professionals.
Recreation and Leisure Activities: "Watching TV/listening to music" and "going out to eat" were the two most popular recreation/leisure activities. Young adults with learning disabilities were more likely to spend their free time engaged in social activities than others in the sample. Community Participation and Citizenship: Most of the individuals with learning disabilities and those with emotional/behavior disorders drove a car or
Folow-Up Continued on page two
F-Y 1995 Cost of Care Rate at RTCS Announced
The. Minnesota Department of Human Services. (DHS) recently announced the daily rates for the Cost of Care in Regional Treatment Centers (RTCS) for persons with mental retardation and related conditions. Effective July 1, 1994, the daily charge for care for each person at the seven RTCS will be $324 per day, or $115,344 per year. This is only a slight increase from last year's rate of $310 per day, $113,150 per year. DHS calculates interim charges on a per diem basis for each fiscal year by dividing the sum of all anticipated costs by the projected resident days.
As of June 1994, the total population of persons with mental retardation and related conditions residing in all seven RTCS was 702. RTC populations have decreased consistently over the past years: 862 residents in 1993; 1,033 residents in 1992; and 3,065 residents in 1977 (or, a reduction of 77 percent over the past 17 years).
For more information, `contact Larry Houff, Reimbursement Division, Department of Human Services Building, 444 Lafayette Road, St. Paul, MN 55155, 3824. 612/296-4889.
Inside This Issue..
Leadership Institute Held in Minneapolis
Cost-Effective Personal Assistance Services
Follow-up continued from page one
motorcycle, while the majority of young adults in the mild mental impairment and moderate/severe disability groups either used a special bus or van or depended on family and friends for transportation. The majority of former students shopped for personal items, paid for some or all of their living expenses, and had either a saving or a checking account. Only 42 percent of the former-students had voted in an election. Over 80 "percent knew who to contact in the case of a medical emergency or if a victim of a crime. Government and Special Services: The use of state and community services was generally low. The most popular government assistance programs were Supplemental Security Income (SSI) and Medical Assistance programs. However, these were mostly used by young adults in @e moderate/severe disability group. Satisfaction: The former students overwhelmingly expressed satisfaction with their lives in terms of their daily activities, friendships, living arrangements, and use of free time. They also expressed a high degree of satisfaction with their high school experiences and preparation. Non-graduates: Over two-thirds of those" who did not graduate from high school had reentered high school at least one time after first dropping out. As a group, nongraduates had a much higher unemployment rate than graduates. Females who became pregnant while in high school were at highest risk of not graduating. Conclusion: The findings from the Minnesota Post-school Follow-up Study are generally more optimistic than findings from similar studies completely in Minnesota during the 1980s and studies from other parts of the United States. These findings support the value of the efforts that have been made to improve transition services over the past decade. However, this study also clearly documents that young adults with disabilities continue to face many challenges in making a successful transition from school to adult life. For copies of the report, contact: Institute on Community Integration, University of Minnesota, 109 Pattee Hall, 150 Pillsbury Dr., SE, Minneapolis, MN 55455. 612/624-4512.
Student Outcomes
When I leave school, I should have . . .
A place to go every day where I can be productive doing things I enjoy and do well. A friend, family member or advocate who knows me well enough to protect my interests. Opportunities to choose and participate in leisure activities 1 enjoy. Enough income to maintain my chosen lifestyle. Access to health and medical services. Opportunities to express my sexuality. Away to effectively communicate my needs, choices and opinions to friends and strangers. Skills I need to take care of myself or to assist the people who care for me. . . Opportunities to continue to learn and grow. Skills I need to develop and maintain positive relationships with my friends and family and the people I meet and work with. opportunities to be an active member of my community. Skills I need to access and use technology that will help improve my lifestyle. A" circle of friends who understand me, share my interests and provide mutual supports. skills I n~ to access and understand the information available , ` through print and media. A diploma or certificate that confirms that 1 have successfully
completed the requirements of my educational program.
Marilyn Wessels Schools Are For Everyone (SAFE) Schenectady, NY
National Seminar Series Features T. Berry Brazelton, M.D. September 20-21, 1994 The staff at Gillette Children's Hospital and St. David's School for Child Development and' Family Services have been working together to bring an outstanding educational opportunity to Minnesota. T. Berry Brazelmn. M. D., faculty member at Harvard Medical School, recognized Pediatrician and expert in the field of child development, will be the featured speaker a! the following events: o September 20, 1994 (7:00 p.m. to 9:00 p.m.).: "Stresses and Supports for Families in the 90's, " Dr. Brazelton will offer a lecture for parents at Northrup Auditorium. Fee: $5.00 per ticket at Northrop -Auditorium Ticket Office. " Call: (612) 624-2345. o September 21, 1994 (7:45 a.m. to 4:30 p.m.): A workshop on community issues, "Partnering with Families, " will be presented by Dr. Brazelton and" Peter Blasco, M. D., from Gillette' ,Children's Hospital. The workshop. will be, held at Radisson Metrodome Hotel, University of' Minnesota Campus. Fee: $95 per person ($65 for students), with 10 Percent discount for groups of five or more. Contact: Cindy Himes, SI,
David's School for Child Development and Family Services, 13120 ~ McGinty Road, East, Minnetonka, MN 55305. 612/939 '0396.
Minnesota's Leadership Institute Has National Impact
I The Governor's Planning Council on Developmental Disabilities recently sponsored a national training event--l 994 Minnesota Summer Leadership Institute, "Charting the Course, " July 17-20, 1994. Attended by 157 people (91 people from other states and 66 Minnesotans), this was the third advanced leadership institute geared to generate and regenerate enthusiasm for becoming an advocate--toward changing public policies that will improve the quality of life for people with developmental disabilities and their families.
The Council has-carefully chosen its priority for the decade of the 1990s-"Leadership Development. " True leadership in the, arena of policymaking for people with disabilities must come from parents, people with disabilities, and family members. Thus, Partners in Policymaking was created eight years ago. "Partners" is an eight month, 128 hour, course for parents with children with developmental disabilities and for individuals with disabilities on how, to be their own best advocate. ~-is intense leadership development course has now been replicated in 34 states and one U.S. Territory. Over 230 Minnesotans have graduated and are now involved on citizen committee, influencing the media, and providing a number of leadership roles in their respective communities.
The Summer Leadership Institute `was intended to bring Partners graduates together from around the country to focus on current issues, gain a broader national perspective, and apply knowledge and skills gained in training.
Institute participants were immersed in learning more about 4 current issues: 1) implementation of the Individuals with Disabilities ,Education Act; 2) health care reform; 3) personal assistance services; and 4) family support policy. Once prepared with the facts, participants then presented testimony before "real" public official;; In addition, other topics were presented by nationally recognized speakers/facilitators on the following topics: building alliances through trust and interpersonal relationships; community organizing grassroots empowerment; effective board `membership; facilitating meetings; grantsmanship; influencing the political process; negotiation skills; personal assistance services; lifestyles for adults; and school inclusion.
Institute evaluations by participants were very positive. Here are. a few of their parting words:
Of most value was the opportunity to network with others throughout the county. -. This experience has reinforced learned knowledge ad skills. It took the fear out of testifying before public officials). It helped me to tie together some loose ends that I struggled with all through Partners training. I am encouraged--I'm fired up again! Partners is powerful and innovative. The word is OUT and it is amazing where it shows up.
For more information, contact: Miimesota Governor's Planning Council on Developmental ,Disabilities, 300 Centennial Office Building, 368 Cedar Streetl St. Paul, Minnesota 55155. 612/2964018 (voice); 6121296-9962 (TDD); 612/297-7200 (Fax).
Walker Art Center Presents: When Billy Broke His Head. . . and Other Tales of Wonder September 16, 1994 (8:0.0 p.m.). Award-winning journalist and radio disc jockey Billy Golfus, who experienced brain. injury from a traffic accident, tells a straightforward, no apologies look at the true and unfiltered stories of people with disabilities. "This should be seen `by every man. woman and child in America, " said Lucy Gwin. Editor of This Brain Hus u Mwdr. " Contact: National Disability Awareness Project, 513 Ontario Street, Minneapolis, MN 55414. 612/33 l-i + 30.
Event<s \
September 21-22, 1994: The 1994 Minnesota Semi-Independent Living Services Conference will be held at the Holiday inn in St. Cloud. Contact: Laura Lund, 612/ 870-0383; or Sharon Polcher, 218/263-891 1. . . September 22, 1994: (12:30 p.m. and 3:00 p.m. ) Vinland Seminar: `The Changing Faces of Rehabilitation, " with featured speaker, Oliver Williams, Professor of Social Work, University of Minnesota. Followed by Vinlandfs den House. Contact: Sue Rivard, Vinland National Center, Lake Independence, P.0, Box 308, Loretto, MN 55357. 612/479-2W5 (voice and TTY). September 23-24, 1994: ( 12:00 noon Friday to 4:00 p.m. Saturday. ) Nursing Leadership Conference, "Children with Special Health Care Needs: Issues, Challenges, and Opportunities in Health Care Reform" will be held at the Holiday Inn Minneapolis West. Contact: Sharon Vegoe, University of Minnesota School of Nursing, Children with Special Health Care Needs Program IIT 612/626-4330, or 61 2/625-4352. September 28-30. 1994: "Partners in Transition" is the 12th National Home and Community-Based Services Conference, Radisson Hotel, St. Paul, MN. FOCUS will be on preparing for and managing change health and human services reform. Host: Minnesota Department of Human Services. Contact: Joyce Hell, Conference Coordinator, Pathfinder Resources, Inc., 612/647 -6905 (voice), 612/647-6908 (fax).
Lending Library The following resources are available on loan; publications for three weeks; videotapes (VHS 1/2? cassette) for two weeks. The `only cost to tie borrower is the return postage. Publications: How to Get Services by Being Assertive: For Parents of Children with Disabilities and Their Helpers (Revised 1993), Charlotte Des Jardins, Family Resource Center on Disabilities, Chicago, Illinois. Provides a process toward empowerment for parents and persons with disabilities. The authors state, "If you're not satisfied with your quest for services; if you're tired of all those `no's' Ad `cant's'; and if you really want to do something about it- this book is for you. " How to Organize an Effective Parent/ Advocacy Group and Move Bureaucracies (1993), C. Des Jardins, Family Resource Center on Disabilities, Chicago, Illinois. This is a comprehensive guide for starting and maintaining effective parent and/or advocacy organizations--including how to: reach out to other parents, recruit volunteers, raise money, influence policies, keep art organization healthy, and, most importantly how parents can help their children and themselves by joining forces with others. Developing Natural Supports in the Workplace (1993 ),' Center on Human policy, Syracuse University. Results are shared from a project about how to foster social relationships in integrated work settings during typical routines and activities. Provides helpful checklist for evaluating natural supports.
Cost-Effective Plan Recommended for Personal Assistance Services The World Institute on Disability .~D) has released the results of a study of the cost of personal assistance services (PAS) that has major implications for lowering the estimated cost of the PAS portion of the Clinton Health Reform Bill. Results of WID'S study, revealed that the cost per hour ()!" service can be reduced by one half if individual providers administer the service (e.g., hiring, tiring, training, and paying the assistant) rather than having them organized through a home health care agency. Personal Assistance Services (PAS) are tasks performed for a person who has a disability by another person which aim at ,maintaining well-being, personal appearance, comfort, safety, and interactions within the community and society as a whole. Between 9 and 11 million Americans, about one in every 20 people, require some assistance to accomplish typical every-day tasks. . ,,
On the average, agency providers cost nearly twice as much as individual providers (that is, a mean average o-f $10.20 "vs. $5.25. per hour. respectively). More than half of this difference is not the result of' paying individual providers less, but reflects the administrative and bureaucratic costs built into the big business of home health care. "Savings to the entire system which might be realized under individual provider models are so substantial that no policy discussions can afford to ignore them, " concluded Ed Roberts, WID president. Roberts continued, "Long-term assistance proposals are traditionally weighted heavily toward home health agency services. But, if individual providers were substituted in many, instances, Twice as many people could be served for the same price. It is in overtone's best interest to offer `the choice model, ' which offers both greater support for independent living and lower costs, " Roberts concluded. Publicly funded PAS programs currently serve about 11 percent!" people who need assistance. Another 10 percent pay for services out of' pocket. The remainder receive only unpaid assistance from `family `and friends. Some even struggle along without assistance and some remain in institutions, such as nursing homes, for lack of adequate assistance to live in the community. `For more information, contact: World Institute on Disability, 510 Sixteenth .Northwest. Suite, 100, Oakland, CA 9461~-1500. 510/763-4100 (voice & TDD); 510/763-4109 (fax).
Futurity
DEPARTMENT OF ADMINISTRATION Governor's Planning Council on Developmental Disabilities 300 Centennial Office Building 658 Cedar Street, St. Paul, MN 55155
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Roger Strand, Editor 612/296-401 8 (Voice) 612/296-9962 (TDD) 612-297-7200 (FAX
` Bulk Rate
U.S. Postage . Paid Permit No. 171 . ` St. Paul, MN -
TIME DATED MATERIAL ,
, Minnesota Governor's Planning Council on Developmental Disabilities
.Inclusive Education: Assessing Needs of Families in Minnesota "Many parents who have school age children and youth with disabilities, by virtue of the barriers they face, do not always-have a full choice of where or how their child should be educated. In addition to facing the barriers related to a disability, "children also appear to be segregated by economic, ethnic, and age criteria. " This was the major conclusion reached in a recent survey of Minnesota parents. ( The Family Needs Assessment arose out of an identified need in Minnesota to evaluate the experience and needs of families relative to the inclusion of children with disabilities in general education. The survey and report were produced by the Together We're Better Program: Inclusive School Communities in Minnesota.. ,Partnership `for Systems Change, a collaborative program between the Institute on Community Integration at the University of Minnesota and the Minnesota Department of Education. The study was also conducted in partnership with PACER Center, Arc .Minnesota, The :Governor's Planning Council on Developmental Disabilities, Learning Disabilities of Minnesota, and the Deaf-Blind Technical Assistance Project. Parents, advocates, educators; and persons with disabilities all played a role in the development of the survey. Approximately 6,500 questionnaires were distributed. and 1,630 (25 percent) parents responded. The study .'sample -was representative of Minnesota's population (with 50 percent of the families living in the Twin City metropolitan area), and the population distribution by type of disability. However, one way in which the study sample differed from the state population was that many parents were from school districts that had demonstrated leadership and progress in the development of inclusive school communities, had received training on inclusion-related advocacy, or had been involved with parent groups supporting inclusion. As a result of these supports, the rate of inclusion for children in this study may be higher than would be typical across the state. Major findings of the study are summarized in the following categories: educational placement,, parent satisfaction, inclusion of students in general education, and parent support. `" . * Educational Placement .
Where are students with disabilities being educated? Projecting from this survey, of all the children receiving special education in = Minnesota, probably: o Less than 25 percent are being served solely in general education classroom. o More than 50 percent are being, served in a combination of special and general education settings. . # o At least 20 percent are totally segregated in special education environments. Note: Parents of children in mixed environments were least satisfied with their child's progress, yet this is how most children received services. Where do parents want their children to be educated? o Ninety-four percent want their child to spend at least some time in a general education setting. Minnesota Families continued on page two
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`Council Seeks New Members
Applications are being accepted for serving on the Minnesota Governor's Planning Council Developmental Disabilities `" -Those appointed by: the Governor will be sitting on the Council for a three-year ,t.&+ in early 1995. . " The Council assists in the section of priorities for the development of a state plan. The Council also advises state policymakers on issues pertaining to the. provision of an array of services to individuals with developmental disabilities and their families, such as in the area of health, education, human services, housing, and ` transportation. Individuals with "developmental disabilities" are those who have severe, physical or mental disabilities which occur before age Twenty-two and are likely to continue indefinitely. A developmental disability significantly limits three or more major life activities such as: self-care, language< learning, mobility, self-direction, independent living, and economic self-sufficiency. Individuals who have a development-d disability, parents, and providers of services are encouraged to apply. Applications are due by January 1, 1995. Please contact the Office of the Secretary of State to request the for entitled "Application for Service in State Agency. m Address: Secretary of State, 180 Constitution Avenue, St. Paul, MN 55155 .Telephone: 612/296-3266. -
Inside This Issue... * Division of Family Health Created
o Task Force on Education of Children with Disabilities Seeks Public Input
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Division `of Family Health Created The Minnesota Department of Health recently announced that effective August 24, 1994, the Division of Maternal and Child Health and Sections from the Division of Health Promotion and Education will merge to form a new Division: Division-of Family Health.
Director of the Division is Donna Petersen. 612/623-5167.
o Public Input Requested on Education of Students with ` " Disabilities The Task F&Ce on the Education of Children with Disabilities was reappointed by m Parent Satisfaction ` the 1994 Legislature to make recomihenda. tions related to four issues: 1) entranceexit criteri~ 2J homebound educ>tion and related issues; 3) class siz.dteacher-pupil ratios; and 4) the development of a technology plan for special education. "The Task" Force is seeking ,oral'fe-sdback or s@tements in writing regarding these specific issues. What should be kept, changed, or eliminated? .SVhat is good? What problems have you experienced? Responses must be made no later than October 30, 1994. `Contact: Patty Anderson, 8th Floor Capitol Square Building, 550 Cedar Street, St. Paul, MN 55"101. 612/296-6104.
Examples of Interagency Collaboration/Transition ~ Services Requested The Minnesota Departti'ent ~ Educatiotr, Division of Rehabilitation Services; and State Servic~s for the Blind are currently working together to describe and clarify the joint provision of services to youth " With disabilities from school to work and community living. A @debook will be published which will share how agencies have collaborated through use of state and federal legislation, policies, funding sources, and examples of coordinating services to individuals. Stories are also needed on how individuals are provided with Suppo-rts and services. Contact: Teri Wallace, Institute on Community Integration, 6 Pattee Hall, University of Minnesota, 150 Pillsbury Drive, SE, Minneapolis, MN 55455. 612/626-7220 (tioice); 612/624-9344 (fax). ,
Minnesota Families continued from page one
o The majority wanted their child to spend most of their time in a general education setting. o One third wanted their child to spend most of their time in a special education setting. Note: Parents whose children spent more time in general education felt stronger , about having their child included in general "education. What influences whether a student spends most of his/her time in general education settings?
Parent preference: If the parent wants their child in general education, that is where they tend to be educated
* Severity of a child's disability: The more severe the disability, the less likely. the child will be educated IN general education.
* ` Age: Children tend to spend more time in general education during the" elementary years and much less time in general education at the preschool, middle school, or high school levels: . .
Parent Satisfaction
What needs to happen to. ensure parent satisfaction with their individual educational planning process (IEP)/ individual family s-ice plan (IFSP) experience and with their child's progress?' . Believe that my child can learn and he optimistic setting goals. c .Respect and value my input and feelings. 4 Don't forget to develop social and behavioral goals. . Help all children value and treat one another well. o . Train all staff to understand the content and goals of the individual educational planning-process (IEP). . .
while parents tend to be least satisfied .With their child's program? 7 . Parents with a high school age child. . Parents whose child has a `severe disability. o Parents whose child has an emotional behaviors-l disability. ,.0 .Parents of color. c Parents with low incomes. . . ,. Parents who are single. "Note: 1) Parents of color and families with low ""incomes were not only less satisfied with their child's progress, they also received less -information and support, ~d their children were disproportionately placed special education, particularly in the category of emotional behavioral disabilities; 2) When parents of color had the support of-an advocate, their positive experience with the IEP process, overall satisfaction, agreement that their child benefited from being in general education, and the desire to have their child in general. education increased to 100 `percent on all measures for most ethnic groups. The support of an advocate had a similar effect with low income families.
.9 Inclusion of Students in General-Education ` What worries parents about having their child educated in `general education settings? . Will my. child get the support they need? Q Will they receive good instruction? o Will other children accept my child? . Will my child learn? `" What did parents identify as barriers to successful school inclusion? o Lack of money in schools. o Large class sizes. . Lack of skill by general educators in working with students with disabilities and particularly in working with behavioral issues. o Attitudes of other students toward students with disabilities. 0 Members of a child's team not working well together. > Minnesota Families continued on page three
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Minnesota Families continued from page two
o Attitudes of general educators toward students with disabilities. o Rigid or narrowly defined instructional goals in general education, and, in particular, goals for their child. $ Teaching methods used in general education. + At, the secondary level, grading practices. o Racial insensitivity (as identified by African. American Asian, and Latino parents). Note: Parent concerns decreased when students spent more time in general education. As an example, related to how their child will be accepted by other children and general educators, those whose children spent most of their time in general education were less concerned about this than parents whose children were in special education full time. Despite the significant barriers identified, benefits from being in' general education were seen as important and durable, with a range from 70 to 100 percent satisfaction expressed by the parents. What were experiences or factors that were key to a child benefiting from being in general education?
A classroom teacher who is" supportive and flexible in meeting a child's needs. Staff respecting and valuing parents' input and feelings. Staff believing a child can learn and being optimistic in setting goals. General educators skilled in working with children with disabilities. Flexible appropriate instructional goals in the general education classroom. Having a child's team be aware of the content of his/her individual education plan. Paying attention to setting social and behavioral goals. Helping all children to value and treat one another well.-, Supporting participation in class activities. ,, "-
hat kind .of support do parents say they-need? o The support of school staff. o Training on how to support their child, their rights, their child's rights, &d how to communicate with staff. o More opportunities to meet with school staff about their child's education. c Written information about how to handle their child's behavior. .
* Next Steps .-
In August 1994, focus group training was provided for representatives of the participating organizations. These individuals plan to conduct focus groups this , fall with parents and staff in their organizations in an attempt to select priorities from the identified needs and then develop collaborative-strategies to meet those needs within their organizations. In 1995, staff from the Together We're Better program will meet with participating agencies, discuss major needs, and identify areas for interagency collaboration. .
For more information bout the survey results or focus group opportunities, please contact the Institute on Community Integration, 111 Pattee Hall, 150 Pillsbury Drive, SE, Minneapolis; MN 55455. 612/624-1349. Copies of the full report or a thirteen page executive "summary, ]inclusive Education: Needs of Minnesota Families, 1994, (available in print and alternative formats) can ,be ordered by contacting the Publications Office, Institute on Community Integration, University of Minnesota, 109 Pillsbury Drive, SE, Minneapolis, " MN 55455. 612/624-4512. .'
Events
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October 6-7, 1994: "Creative Options for People with the Most Severe Disabilities, " 6th annual training symposium featuring nationally known experts. Location: Thunderbird Hotel and Convention. Center, ,2201 East 78th Street, Bloomingotn, MN. Sponsors: South Central Technical College, Governor's Planning Council on Developmental Disabilities, and the Minnesota Habilitation Coalition. Contact: South Central Technical College, Custom Services, 22W Tech Drive, Albert Lea, MN 56007. 507/373-0656, Ext. 225; 800-333-2584; 507/373-1758 (fax). .,
November 3, 1994: "Partners in Support: A Conference on HIV/AIDS and Developmental Disabilities, " sponsored by Opportunity Workshop, Minnesota AIDS Project, and Minnesota Institute of Public Health, will be held at Holiday Inn Minneapolis West, St. Louis Park Contact: Cindy Tarshish, Opportunity Workshop, 5500 Opportunity Court, Minnetonka, MN 55343. 612/938-5511 (voice); 612/9304293 (TDD).
November 8, 1994: "Pre-Conference `Workshop on. Early Intervention (Part H)", Mall of America Grand Hotel. Contact: Pam Hunt, Institute on Community Integration, University " of Minnesota, Pattee Hall,' 150 Pillsbury Drive, . NE, "Minneapolis, MN 55455. 612/625-3863.
November 9, "1994: "Coming Together for Children, Youth, and Families," a collaborative conference. for members of: Interagency Early Intervention Committees, Local Coordinating Councils, Local Advisory Councils, and Community Transition Interagency Committees. Location: Mall of America Grand Hotel, Bloomington, MN. Contact: Pam Hunt, Institute on Community Integration, University of Minnesota, Pattee Hall, 150 Pillsbury Drive, NE, Minneapolis, MN 55455. 612/625-3863.
November 21, 1994 (12:00 noon to 4:00 p.m.): Ninth Annual Job Success Fair, "Exploring Your Options, " Marriott Hotel Bloomington, is for individuals with disabilities. Contact: Nancy K. Schuett, City of `Bloomington, 61X88115811 (voice); 612/887.9677 (TDD).
December 8-10, 1994: "Creating a World of .' Community --Alliance for Action, " Marriott Marquis, Peachtree Center, Atlanta Georgia. Contact: The Association for Persons with Severe Handicaps, 11201 Greenwood Ave., N., Seattle, WA 98133. 206/361-8870 (voice); 206/361-9208 (fax).
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Lending Library
The following resources are available on loan; , publications for three weeks; videotapes (VHS 1/2 cassette) for two weeks. The only cost to the borrower is the return postage.
You Can Vote, videotape, 30 minutes, Michigan League of Women Voters and Michigan Developmental Disabilities Council, encourages people with disabilities to meet their responsibilities as citizens--to register, and to vote.
Kids Belong Together, videotape, 30 minutes, People First Association of Lethbridge, Alberta, Canada. Through cohesive circles of friends, communities become a place for everyone. Parents mid children with disabilities learn the importance 'of dreaming for the future and to share these dreams with others. Scenes primarily in elementary school settings.
Our Voices Count: Self Advocacy Now, Self Advocacy Association of New York State, Inc., People with disabilities speak out, encouraging others to voice their concerns, as well.
. No lasting achievement is possible without a. vision, and no dream can become real without action and responsibility..
William Butler Yeats
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DRAGnet Expands Computer Services DRAGnet, a Minnesota-based nonprofit group serving people with disabilities, has relocated its office to the historic Textile Building in downtown Minneapolis. The move accompanies an expansion of the DRAGnet RE=PC computer recycling project which provides low-cost access to computer technology for disadvantaged individuals and the nonprofit service community. RE=PC offers a tax-deductible donation for computer equipment. `me donated equipment is then refurbished and placed with people who would not otherwise be able to afford similar equipment. The project generates high technology skills training and employment opportunities for people with disabilities. Another service, Computer Precision; provides fee-based consulting to organizations, and provides system design, management and training. In addition, DRAGnet Information Service; an electronic bulletin board, provides worldwide information on disability related topics, which can be reached with a computer and modem at 612/753-1943 (ANSI emulation; eight dab W no parity, and one stop bit [8-N-1]). This newsletter, Futurity, is available via the DRAGnet Information Service. .
For more information, contact: DRAGnet, 119 North Fourth Street, Suite '405 Textile Building, Minneapolis, MN 55401. 612/33$-2535. * Council Publications in .Alternative Formats: 1] Friends: A Manual for Connecting Persons with Disabilities and Community Members, Human Services Research and Development Center, on audio, cassette; 2) Futurity, on audio cassette and is available through DRAGnet and Children, , `Youth, and Family Consortium Clearinghouse (electronic bulletin boards); 3) Making Your Case, Braille, computer disk, and audio tape; 4) Minnesotans Speak Out, Summary of Town Meetings, audio cassette; 5) .Shifting Patterns, publication in Braille and on audio cassette; and videotape with closed captions; 6) It's Never Too Early, It's Never Too Late videotape, is available with closed captions; and 7) It's Never Too Early, It's Never too Late publication; is available on audio cassette. See return address and telephone numbers, below. `"
Futurity
DEPARTMENT OF ADMINISTRATION Governor's Planning Council on Developmental Disabilities 300 Centennial Office Building . 658 Cedar Street, St. Paul, MN 55155
Roger Wand, Editor ,612/296-4018 (Voice) 612/296-9962 (TDD) 61 Z297-7200 (FAX
Governor's Planning Council on Developmental Disabilities
U.S. Congress Endorses Families of Children with Disabilities Support Act of 1994
On Wednesday, October 5,.1994, the United States Senate adopted the Developmental Disabilities Assistance and Conference Committee Report to reauthorize the Elementary and Secondary . Bill OT Rights Act of 1994, the purpose of Education Act (ESEA). Section 315 of this Act contains `tie "Families if Children with Disabilities Support Act of 1994. " According to Allan Bergman, director of State-Federal Relations of United Cerebral Palsy Associations, as of October 7, 1994, this new legislation was on its way to President Clinton for his signature. The legislation is the result of much hard work by individuals and organizations throughout the country. "Our jointly developed values, principles; and policies for family, support are about to become the law of the land!" exclaimed Bergman. [See previous article: "National Family Support Legislation Drafted, n
Futurity (July .1993 )]. "
Unfortunately, " continued Bergman, "because of the extensive delay in bringing ESEA to a vote, funding was not secured under the new federal budget which began on October 1, 1994. Bergman said that this new legislation will establish a new foundation for the reauthorization of Individuals with Disabilities Education Act (IDEA] next year. "We will have 'to work diligently with the members of the Senate and House Labor, Health and Human Services and Education Appropriation Subcommittees next year to secure appropriations for the federal fiscal year beginning on October 1, 1995. "
According to Senator Tom Harkin, Chair of the Subcommittee on Disability Policy, Committee on Labor and Human Resources, "It is now the policy of the .United States that (quoting directly from the legislation):
(1) Family support for families of children with disabilities must focus on the needs of the entire family.
(2) Families of children with disabilities should be supported in determining their needs and in making decisions concerning necessary, desirable, and appropriate services.
(3) Families should lay decision making roles in policies and programs that affect their lives of such families.
(4) Family needs change over time and family support for families of children with disabilities must offer options that are flexible and responsive to the unique z needs and strengths and cultural values of individual families.
(5) Family support for families of children with disabilities is proactive and not solely in response, to a crisis.
(6) Families must be supported in' their efforts to promote the integration and inclusion of their. children with disabilities into all aspects of community life.
(7) Family support for families of children with disabilities should promote the use of existing social networks, strengthen natural services of support, and help build connections to existing community resources and services.
(8) Youth with disabilities should be involved in decisionmaking about their own lives, consistent with the unique strengths, resources, priorities, concerns.
(9) Services &d supports must be provided in a manner `that demonstrates
Family Support Act continued on page two
.
abilities, and capabilities of each such youth.
What Does Cultural Competence" Mean? by Vivian Jenkins Nelsen
When the U.S. Congress reauthorized the Developmental Disabilities Assistance and Bill of Rights Act of 1994, the purpose of for providing assistance to State Developmental Disabilities Councils was stated:.
to promote, through systemic change, capacity building, and advocacy activities . . . the development of a consumer and family weltered, comprehensive system and a coordinated array of culturally competent services, supports, and other assistance designed to achieve . independence, productivity, and integration and inclusion into the community for individuals with developmental disabilities. " The term `culturally competent" was defined in the ,Act: `. . . services, sup" ports or other assistance that are conducted or provided in a manger that is responsive to the beliefs, interpersonal styles, attitudes, language and behaviors of individuals who are receiving services, and in a manner that has the greatest likelihood of ensuring their "maximum participation in the program. w This definition, however, misses one key component--people have to -be part OF the service team. Our challenge is to reach all cultures to understand how each culture views an individual or child with a disability. Not until we gain such understanding and sensitivity will anyone , really effectively communicate and work together as a tam.
Competence continued on page two
Inside This' Issue
Getting a Life by Ann Turnbull (part one)
-Multimedia Expands Training
Competence continued from page one .
What people really "need to understand is that they are only temporarily able. bodied and that we are all a part, in and out, of our respective communities. People are only a drunk driver or a bar of soap away' from having a disability. What all of us need is to be fully competent, fully able to do the very best of our abilities what we want to and need to do-in our communities and our work places. Discrimination is alive and well everywhere you look:
o Most discrimination is annoying, and is usually not intentional. ~
Most discrimination is on an unconscious basis--you need to go deep to find it. ` .
You know you are being discriminated against when you can't get the" services you need, while others are getting the services they need
o You know' you are being discriminated against when you're the only one in the room like yourself.
When thinking about services and cultural competency; we need to be planful. Progress does not happen overnight. Nor can we expect to accomplish our tasks in three months< or three years, and be done. Diversity "is more complex than that. We need to plan for a long-term commitment, beyond the usual three-year cycle that is doomed to fail.
When planning, we n@ to allow for the mistakes we will inevitably make. Mistakes do happen, and we need time to recover from them. Taking risks is what it's all about. However, don't make the. same mistakes twice. Be planful for change-<change that is long-term.
Utilize your connections, or networks in the community, and be willing to pal for. people's assistance Parents, in particular, from diverse cultural backgrounds, are worn out from having to train the traditional white professional to do their jobs. Even if they offer to do a job `for nothing, make an offer to pay for their services.
Minnesota has many challenges in an increasingly diverse society. We are the pioneers in the area of dealing with' diversity, and we must work thoughtfully, _ planfully, in a relationship with a . community that is long-term:
[Vivian Jenkins Nelsen is "president and chief executive officer of INTER-RACE, located on the Augsburg College campus. This article a summary of her.. recent presentation to the Council on Developmental Disabilities.]
Family Support Act continued .from page one
respect for individual dignity, personal responsibility, self-determination, personal preference and cultural differences of families.
The primary purpose of the Act ii `to provide financial assistance to the states .to support systems change ,activities designed to assist states to develop and implement, or expand and enhance, a family-centered and family-directed, culturally competent, community-centered, comprehensive, statewide system of family .support for families of children with disabilities. Grants to ,states will be on a competitive basis to ,,support system change activities to develop ~d implement, or expand and enhance, a statewide system of family support for families of children with disabilities. "
Other features of the Act include:
o Grants to States: Grants will be awarded on a competitive basis for no more than three years.
o Lead Entity: The Chief Executive, Officer of a state shall designate the office, or lead entity, to administer 'and inordinate the activities under the Act.
o State Policy Council: Before receiving funds, the state must designate an existing Council, or establish a new Council, -to be considered as a "State Policy Council for Families of Children with Disabilities. " Such Councils must consist of a majority of members who are individuals who are family members of children with disabilities, appointed by the Chief Executive Officer of the state or the appropriate appointing official. Additional representation must include: children with disabilities, who are ages 18 to. 21 and are representative of the demographics of the state; state agency representative;; state officials responsible for budget and finance; and others deemed appropriate.
Authorized Activities: A state that receives a systems change grant may use @& to:
o Provide training and technical assistance for family members, service providers, community members, professionals, "members of the Council, students, and others to accomplish: increase family participation, choice, and control of family support; promote partnerships with families; develop or strengthen family centered and. family-directed approach; assist families in accessing `natural ad community supports, and in obtaining benefits and -services; o
Provide interagency coordination of federal and state policies, resources, and services; . Enhance funding options and coordinate access to funding for family support services; . o Document and disseminate information about interagency activities;
o Develop local and regional councils; ~ Conduct outreach activities to locate the families who are eligible for family support; .o Support policy studies; . Conduct hearings, forums, and needs" assessments; `.
o Conduct public awareness and education activities; and
o Support pilot demonstration projects.
Strategic Plan: Not later than 6 months after receipt of funds, the lead entity (office) in -conjunction with the Council, shall prepare and submit a strategic -. plan to the Secretary of Health and Human Services. The plan will spell out the mission, principles, goals, and objectives for developing and implementing, or expanding and improving, the system for providing `family support services for families of children with disabilities, &n ~ the achievement of family centered outcomes.
For more information, contact: Allan" I. Bergman, State-Federal Relations, United Cerebral Palsy Associations, 1522 K Street, NW, Suite 1112, Washington, DC 20005-1202. 800 USA-5UCP; 202/842-1266 (voice and. TT); 202/842-3519 (fax).
Getting a Life (Part One `of.. a Two-Part Series) ` by Ann Turnbull I want to tell you our family story. when Jay was finishing high school, about eight years ago, there was a new thing called supported work, a real job, rather than students 'with disabilities going to a sheltered workshop or just graduating to unemployment. When we mentioned supported employment for Jay to his teacher, she thought we were being unrealistic, that we still hadn't accepted the extent of his disability (mental retardation and autism), and that we really need to get in touch with the fact that he was the lowest functioning student in the `class. She, said that au the students much more capable than he were going to a sheltered workshop. Why did we think he should get special treatment? My husband Rud and I said" that we didn't think he should get special treatment, they should all go to supportive work! But that wasn't the-vision for people with severe disabilities.
Jay now @s a wonderful life, and I think you will agree that if he can have a wonderful life in Lawrence, Kansas, then people can have a wonderful life anywhere,. But it takes a different way of thinking and the fundamental thing is, you have to get off the back of the bus. You have to refuse to be a second class `citizen. You have to live in. the world the way you would if the disability wasn't there. That's a whole different way of delivering services, of providing support, and for families to live.
Well, Jay was in high school. He had gone, as all the special education students did, on this escalator to the sheltered workshop, where he was earning about fifty cents an hour. He was very unhappy and very depressed. He didn't have a language to say I bate my life, I feel like. a second-class citizen, I don't really like living in the herd "mentality of 22 people going, everywhere together in the community. Not having the word; to say those things, be acted out @ behavior what he wasn't able to say in words. When people have severe behavior problems, it's a form of communication. They're saying-I'm unhappy, I feel trapped, I don't like my life.
So, Jay started hitting and choking people, he started pulling the curtains off the wall in the group home and ripping up the mattress. Our phone was ringing all the time with the latest "behavioral problem. He chose one person to hit and choke every time he saw him, and wouldn't you know, it was the state senator's son. I' don't know if Jay understood the full significance of how quickly that ,was going to get him kicked out of this program. He soon got a one-way ticket out.
So, at nineteen Jay was kicked out of the. only program in town and he really didn't have friends'. Think about the people with severe disabilities you know and how many connected, reciprocal friendships do they have? That's one of the things that we've overlooked in the field of disability. You know why? We thought it was unrealistic. YOU know what? It's not unrealistic! But it doesn't happen because we have it in our minds that our answers lie in our. formal services ad the family support, not necessarily in the ordinary citizens in the ordinary p(aces in tie community who have a tremendous capacity `to reach out and provide support. But. they think it's not their role because this whole formal system is set up to do that.
About that time in our lives, we took a sabbatical and moved to Washington, D.C. We were fortunate to find a wonderful high school program for Jay to attend when he was 21, his last year of public school eligibility. Within a couple of weeks, Jay was beg inning to react in a very different way. Jay had a very hip, groovy, COOL teacher who believed that he could ride in the front of the" bus. Within the first week it was her idea that he should be football manager, an idea that had never occurred to US!' Jay gave towels out, and with his" autistic characteristics, every player had a towel whether he needed or wanted one or not! He was the first giver-out of towels that they had ever had on the team! So, after a few games, they started inviting him `into the dressing room at half-time and with them for their away .games. They started inviting him to ride the bus. Do you know how that changes a person who's always been on the fringe of everything?
I will never forget the night that Jay and his dad and I were at the football banquet at the Walt Whitman High School in Bethesda, Maryland The coach was up in front. He gave letters to the cheerleaders and then started talking about the manager and called Jay up front. He didn't say one word about disability, Special Olympics, special tutoring--none of the language or the baggage of-disability.
He said that Jay had just been here for a year. He's been a great manager, we wish he wasn't graduating, and we have this football jacket for him. Jay was beaming. That night, I think, was a turning point in our lives. We saw that we didn't have to always live on the fringe, that Jay really could participate. ` This article is from a presentation made by Ann ~ `Trunbull at West Virginia's Early Intervention Summer Conference (1994). Ann and her husband, Rud, direct the Beech Center on Families and Disability at the University of Kansas. Special thanks are extended to Ann Turnbull and The Arc `of Harrison County, Clarksburg, West Virginia, for permission to reproduce this article from Fair, Shake, Quarterly Magazine of West Virginia 's-Fair Shake Partnership (Fall 1994). Part 2 will appear in the December issue of Futurity.]
Events
November 18-20, 1994: `Celebrate the Season: A Festival of Trees and Lights, " sponsored by Arc Suburban, entertainment/activities for everyone: Friday--Opening Gala with catered dinner, performance of Handel's Messia the Dakota Valley Civic Center Orchestra and" Civic Chorus; Saturday--face painting by Inver Grove Heights Clown Club, pictures with Santa, a Children's Breakfast with Bob, The Beach-combers, and craft fair; and Sunday --performances by local musicians, and more.-Location: Dakota County Western Service Center, Atrium, 14955 Galaxie Avenue, Apple Valley. Contact: Arc Suburban, 15025 Glazier Ave., Suite 230, Apple Valley, MN 55124. 612/431-3700. December 7, 1994: `Enhancing Literacy through Technology. " Workshop leader: Jane Steelman Center for Literacy and Disability -Studies, University of North Carolina at Chapel Hill. Location: Capitol View Center, Little Canada, MN. Fee: $50.00, includes lunch. Limited scholarships available. Register by November 20, 1994. Contact: Gloria Wiemann, NE Metropolitan Intermediate School District #916--ATRC, Capitol "View Center, 70 West County Road B2, Little Canada, MN 55117. 612/779-5838.
Lending Library ` " The following resources are available on loan; publications for three weeks; videotapes (VHS 1/2" 1 cassette) for two weeks. The only cost to the borrower is the return postage.
Working Together: Workplace Culture, Supported Employment, and Persons with Disabilities, David Hagner and Dale Dileo, Brookline books, 1993. For employers and program personnel, this book presents new approaches for assisting individuals with significant disabilities to achieve meaningful careers. Central to the approach are preventive strategies based on the author's experience with facilitating social inclusion into the culture of the workplace " National Conference on Self-Determination, Institute on Community Integration, University of Minnesota (1989). People with and without disabilities express their viewpoints and provide future directions and recommendations to the Office of Special Education and Rehabilitative Services in Washington, DC. Also contains presentations by Nancy Ward, Frank Bowe, and Gunnar Dybwad. 1994 Minnesota Post-school Follow-up Study: What's Happening to Young Adults with Disabilities? Institute .on Community Integration, .University of Minnesota. Summarizes the results of a survey `conducted in 1993, documenting what people with disabilities do after learning high school, where they live, work, how they participate in community ,activities, and how `satisfied they are with their lives.
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Multimedia Expands Training Opportunities
Through broader availability of personal computers and the emergence of multimedia, opportunities for training more people at greater distances a~ becoming increasingly available. According to City Business, (September 9, 1994) "a host of Twin Cities firms, are making. multimedia a core part of-their " business, as" advertising agencies, graphic design firms, film and video production houses, and training firms embrace the power of multimedia. When we got involved with multimedia five years ago," said Fred Badiyan, founder and president of Badiyan Productions, Inc., in Bloomington, ""there was no name for it then. Now it's a very hot thing. " He continued, "There was a time when film" was a film, video was a video, slide was a slide, and the computer was known for text. Now all of those common tools are merging. When they merge, it's called multimedia. a It doesn't take a multi-million dollar company to make it in the multimedia .' world. In some ways, multimedia production today can be likened to the nascent desktop publishing world of the mid-1980s--a field in which pioneers contract "out' their services to larger clients that don't have the expertise or commitment to the field. Jane Wells of Interactive Learning Technologies in White Bear Lake is one -such pioneer. She's developed multimedia presentations for Learning Disabilities of Minnesota and the Minnesota Governor's Planning Council on Developmental Disabilities. `I remember when I decided to get into the multimedia field: Inauguration Day 1993, when I was caught in an ice storm near Redwood Falls on my way to do some training, " Wells said. "I realized that technology makes other things possible, and I love computers, so I figured there were "other ways to get information to people, taking advantage of technology, without risking my neck in an ice storm. " That led to an investment in multimedia authoring tools and a shingle proclaiming her status as a "content professional," as she puts it. `There's a real disparity in terms of access across the state, a Wells said. "In the Twin Cities, you can get lots of training. If you live in Thief River Falls or Crookston, you need to drive to the Twin Cities to get the good stuff,. especially in human services. w "Use of "multimedia is a way for, everyone to hear everything at the same time. "
Futurity'
DEPARTMENT OF ADMINISTRATION Governor's Planning Council on Developmental Disabilities 300 Centennial Office Building 658 Cedar Street, St. Paul, MN 55155 -. Roger Strand, Editor 612/296-4018 (Voice) 6i2/296-9962 (TDD) 612/297-7200 (FAX
BulkRate U.S. Postage Paid Permit No. 171 St. Paul, MN o x,
TIME DATED MATERIAL
. Futurity December 1994
d . ` Minnesota Governor's Planning Council on Developmental Disabilities
Ho-me and Community-Based Services
Waiver Program Expanded. Assistant Commissioner Helen Yates, Minnesota Department of Human Services, recently announced that the Health Care Financing Administration has approved an amendment to the state's waiver program for persons with developmental `disabilities and their families. The amendment will . significantly revise the menu of services and supports available to participants. Submitted in May 1994, this amendment adds coverage of the following services to the state's primary "Home and Community-Based services waiver program for individuals with developmental disabilities: (a) 24-hour emergency assistance; @) specialist services; (c) caregiver training and education; (d) adult &y care; (e) housing access coordination; (f) assistive technology; (g) personal support; (h) environmental .modifications (replacing the service titled ,"adaptive modifications and equipment"); (i) in-home family support (revising the definition to include extended family members); and (j) homemaker (which revises provider qualifications). "These services will expand the options of services available and better meet individual needs, " said Yates. For additional information, contact your !local county case" manager or call the "Policy Line" of the Minnesota" Department of Human Services: 612/296-9747.
[Source: DHS Information Bulletin, in press.]
Minnesota Develops National Employment Model for People with HIV/AIDS Disabilities Commissioner R. Jane. Brown ,of the Minnesota Department of Economic Security recently announced that Minnesota has received a grant from Special Educational and Rehabilitative Services, U.S. Department of Education, to conduct national pilot program. The $900,000 program will emphasize the employability of people with HIV/AIDS. . Over 1,200 rehabilitation counselors in Minnesota and five other states will receive. training under the project. Under the grant, Minnesota Department .of ~ Economic Security will join forces with the World Institute on Disability, California, Colorado, Florida, New York, and New Jersey.
"Because `of advancements in medical technology, people' with the HIV/AIDS virus can live for years, and em continue to lead productive lives, " said Norena Hale, director of the Division of Rehabilitation Services. When working, people with the HIV/AIDS virus tend to feel better and do not need as many medical services, " she added.
As of August 1994, there were 2,196 Minnesotans reported to have AIDS, of whom 88 percent lived in the seven county metropolitan area. For more information, contact: Allan Lunz, Minnesota Department of . Economic Security, 390 North Robert Street, St. Paul, MN 55101. 612/297-1596.
Interfering with Choice
I think that those of us who feel that a choice is a right mistake when we let people frame the issues around extreme hypothetical situations that happen once every ten years. The truth is that most of the interference with choice actually occurs in much more mundane, routine non-crisis kind.. of matters. Things like when we eat, when we're allowed to use the telephone, who we can associate with, who we do with our time. That's where most of us have felt the most intruded upon and where the lack of choice, has really been a burden to us over a period of years.
Darby Penney
Recipient Affairs, New York State
Office of Mental Health Correction:
"Council Seeks New Members," (October 1994') The article requesting applications for membership to the Governor's Planning Council on Developmental Disabilities-in the October issue of Futurity listed incorrect information. The correct information is: .interested applicants should contact the Governor's Office. Request the form, "Open Appointments Application for Service on State Agency. "~ Applications are due January 1, 1995. Contact: Cheryl Talberg, Governor's Office, 130 State Capitol Building, 75 Constitution . Avenue, St. Paul, MN 55155. 612/296-0077 (voice./Metro area); 800/657-3598 (voice/Metro Area); and 612/296-0075 (TDD).
Inside This .Issue ~ "
"Getting a Life" by Ann ~ " Turnbull' (Part Two-Conclusion)
Federal Grant Expands Respite Care to Families
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Arc Program Provides. Incentives to Employers The Arc has a established an On the Job Training (OJT) program with funds from the United States Department of Labor. Funds are provided to service providers for reimbursing employers for providing job `opportunities to persons with mental' retardation. " Employees may be reimbursed for 50 percent of the. employee's current wage for the first 160 hours. Contact:. The, National.. Employment and Training Program., 8@/433-5255 (voice); TDD users, call 800/855-1155 and ask to place a collect call to 817/277-0553.
Volunteers Wanted Chrysalis A Center for Women, is looking for women to volunteer to assist "with telephone counseling line. All volunteers receive over 30 hours of training. ml ` the Volunteer Services Coordinator at 612/871%118: . Encourage Children's Immunization Against Disease Children should receive 80 percent of their vaccinations before age 2 so they will be protected against disease during the pre: school years." In Minnesota, only 61.4 percent of 2 olds are immunized. Rates vary widely by age, location, and population group-horn as low as 14 percent in some communities to 78 percent in `others. Primary-responsibility for immunizing `children is fragmented. Providers often expect parents to own the responsibility; while parents believe if their children have seen a doctor, their. shots are up-to-date. It is everyone's responsibility. For more information, contact your local community health agency, or: Childrens Defense Fund--Minnesota, 550 Rice Street, Suite
1Q4, St. Paul, MN 55103. 612/2274121.
Our homes reflect who we are `. and what we value.
Sue Bender (1988)
Getting a Life .
(Part Two--conclusion) by Ann Turnbull
After a year in Washington, D. C., our family moved back to Lawrence, Kansas Jay had graduated with his. class, and had the support of his classmates. My worries about his possibly having `a seizure or having a behavior problem did not materialize at the graduation ceremony. We realized the importance of relying on ordinary people, and that it doesn't take a specialist. . . Getting Friends Jay w='22 and he'd been kicked out of the only adult program in Lawrence and -hey weren't going to let him back in; we wouldn't have it if they did. So; it was our job to figure out how to create a life in a very different way. The first person we found when we moved back to Lawrence was chuck. . The best thing we could. ~ of to start with was a paid friend. Chuck 'would . ` `take Jay to a fitness club and they would work out. I wouldn't have believed it before we started on this path, but we ran into the most wonderful surprises It happened that chuck was an advisor at a fraternity on campus and, so he " knew 85 guys who were all Jay's age. Jay is really good in music-that's his `best connection with other people. There was. usually music at the fraternity house, and so Jay started meeting some of the guys. One of the guys he met was Pat., Pat was having some academic difficulty, and was looking for himself. Pat needed Jay as much as Jay needed Pat. That's what we've got to remember. We're not asking for Charity. or for someone to volunteer with our sons and, daughters. We're seeking relationships. If there is anything that we've learned, it's that people who have been in a relationship with Jay have benefited just as much as he has. Once we start thinking in a different way of got asking for a favor, but creating an opportunity for everyone to get their needs met, then we start going at things differently. Pat called..us one night and said he had met Jay at the fraternity house and he had really enjoyed doing some singing with him. He said', "Would YOU mind if I came over to your house and Jay and I spend time together?" What a wonderful phone call to get for parents whose son had never had a friend! How wonderful Jay to have someone who wanted to be with M-m! You think, oh that's fine, but that was a fluke. Pat, who started this arrangement with Jay, has now started a national organization called Natural Ties. He works to get campus organizations to take in one or *O people with disabilities, and is working with organizations across the country. Young people love it!
Getting a Job
Then we started looking for a job for Jay. Rud and I helped to form a new private non-profit corporation to do supported employment. But if was not that' group that helped Jay get a job, it-was a family friend who came-to us and said, "'I think we ought to start practicing what we preach. If we're taking people to work with folks with disabilities I think we should have someone with a disability on the staff. " So, Jay "was hired-as clerical aide '20 hours a week. He now works 30 hours a week, and has very supportive co-workers. He loves his job and is proud of what he does. One of the compelling reasons start inclusion in the very earliest years is the people you meet contacts with are the employers of tomorrow-that's -. how they get their foot-in the job market. Pat came to us after Jay had been visiting the fraternity about a year and a half and said, "I think Jay should move out. I think he needs to live on his own. " That was really frightening with the bad experience he had the first time he did that. We said "That's interesting, but where do you think he might live?" Pat said, `I've talked to one of the guys tithe fraternity and Corey and I want to be his roommates. "
(Getting A Life continued on page three)
Getting A Life continued from page two
Getting "a-Home ~
We ended up working with our family-finances in order to pay the down payment on-a house thatJaypays the mortgage on with the money that heeams. ="At Jay's home, his name is on the mail box. He hti two university student roommates and in lieu.of rent and utilities they each prcwide him with about 1215 hours of personal assistance a week. If somebody had told us eight years ago we would be doing this we couldn't have believed it! But what we have learned is "that vision' grows in ever-increasing circles and as you accomplish' some things, then you begin to think something else is pqssible. .
The question to ask is, why is every state in this countrj paying $50,000$60,000 per ye& to keep people ip residential institutiosq when those siusie residential fisnding streams codd h used in a different way to. heip people have homes of their OV? ; Jay has now had a@ut six different roommates, each staying for about two years. He has awaiting list for roommates! `We've had a lot of suppmt from Jay's group action pkmni.n g team. Group action pl tig is fa@ly, friends, community citizens, and professionals c&ni.ngtogether to do two things: to create sociaJ comectedness with each other and to creatively problem-solve. It's not st~ff and terse, ,there's laughter, warmth, sitting on the floor, and food. It's about vision, and it meets frequently, not every. six to twelve mo@ha: I can't help but wonder what Jay's Iifewcmld belike" now if this kind of community buildigg had started 27 years ago.
Getting Around
I want to close with a story of one of the more profound lessons that I've learned in our wonderful journey over the last eight years: This lesson came from Shirley, who is the owner of the local taxi company. . We had been transporting Jay and his roommates had been transporting him". We know he needed to learn to use public transportation, but we were really afraid of taking the risk. I darted worrying, what if the taxi. driver stole his money? What if they teased him? What if they let him out at his house and they saw nobody was at home and went in and stole something? What if they actually molested him? So then you get immobilized and say we can't be part of the ordinary community because all these terrible, tragic things will happen. One day I decided I had to overcome my fears. The best `way to overcome fear is to invite support. I set, out to find the office of the A-1 Taxi Company. I found it out on the highway, "a rickety old-trailer, where Shirley was sitting at . a dilapidated desk, dispatching the taxis. I sat down and introduced myself, feeling very "uncomfortable, like I didn't really know how to invite Shirley's support. So I started telling Shirley a little bit about Jay and she started asking me questions, I told her my worries. She was doing all this active listening and saying, "I understand, `I'm a mother. I don't blame you, I feel the same way. Is there anything eke you're worried about? Tell me more. " So she did this 40 minute counseling session. She gets all my worries out and she's nodding and understanding and patting me and' giving me Kleenex. She asked, `Is there anything else?" "I said, "Shirley, I told you everything. " Then she pulled her drawer out and took out these little piece of construction .paper. They were green and wrinkled. She started giving me these pieces. of construction paper. I said, `Shirley, what is this?" She said, `"-, you have given me your red card... Your red card of worry, your red card of concern, your red card of not knowing what to do. This is my green card of friendship. This is my green card of understanding, this is my green card of support, and this is my green card of help>
The tears were just coming down my cheeks and I said, "What are you saying to me? She said, "Every day when I get up, I ask the good Lord to let me give as many of my green cards as I. can and to take as many rd cards as I can. Thank you, Ann for, bringing ;e your red cards and thank you for the chance to give you my green cards."
Boy, did I learn. I was sitting there, awed by this ordinary community citizen who has profound wisdom about what it means to ,support people with special needs. Then she started telling me how she was going to handle every one of my concerns. She wanted to match Jay with one driver and then two and ". three others. She said, "I can't tell you today who .I'm going to match him with. I need to think about it, but, 1'1} call you in 24 hours. " She called the next &y and told me she was " going to match him with Jim. She said that Jim asked her why she chose him for this. And-she said, "I just looked straight at him" and I said Jim you need a friend as-much as Jay Turnbull needs a friend. " Shirley-understands what reciprocity ii. Shirley understands what goes around comes around. Shirley understands this isn't volunteer charity. We're-building relationships where everybody has something to gain.
This article is from a presentation made by km Turnbull at West Virginia's Early Intervention Summer Conference (1994): AM and her husband, Rud, Dir. the Beach Center on Families and Disability at the University of Kansas, and are the parents of Jay, a young man with developmental disabilities. Special thanks are extended to Ann Turnbull and The Are of Harrison County, Clarksburg, West Virginia, for permission to reproduce their article from Fair Shake, Quarterly Magazine of West Virginia's Fair Shake Partnership (Fall 1994).]
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Event
January 20, 1994: "The Origins and Treatment of Self-Injurious Behavior, A one day workshop presented by Arlyne J. Gutmasm, and Robert A. Schauerhammer Location: ., Sheraton Midway Inn. Contact: Robert A. Schauerhammer, P.O. Box 240742, Apple Valley, MN, 55124. 612/431-5633.
Editors note: Futurity is not published , in January and July, so please have a . safe and prosperous new year! . .
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Lending Library
I The following resources am available on loan; publications for three weeks; videotapes (VHS 1/2" cassettes) for two weeks. The only cost to the borrower is the, return postage. `
Early Childhood: A Policy of Inclusion (videotape, 23 minutes),. Minnesota Department of Education, 1992. Several schools in Minnesota illustrate the positive impacts made in the lives of children and their families through a policy of inclusiveness.
Families Facing Transition (videotape, 25 minutes), Beach Center on Families and disability, University of Kansas. Powerful interviews with three families who confront change when youth with disabilities make the transition to adulthood. "
Working:. Stories of Supported Employment, Texas Planning Council on Developmental Disabilities; 1991, (videotape, 18 minutes). Individuals with developmental disabilities are successful in a variety of work settings.
Futurity Available on Audio Cassette Please tell your friends and -associates who do not read print that they can request this monthly newsletter on audio cassette. Cd: 612/296-4018 (voice); 612/296-9962 , (TDD).
Federal Grant to Provide Respite Care " for Children with Complex Health Needs The Department of Human' Services recently received a federal grant of $200,000 to enhance existing' respite child care services to serve children who ~ are considered medically fragile". The funds are derived from the, Temporary Child Care for Children with Disabilities and Crisis Nursery Act through the U.S. Department of Health and Human Services, Children's Bureau. Minnesota competed with other states for this grant. . . Community programs will focus on expanding options through existing child care services (i.e., services to families and day centers) and will serve communities of color and families who have "been unserved or underserved. A request for proposals will be announced by the Department within the next month to solicit interest from providers and other interested parties, Projects are expected .to influence system change as well as to design services that are more family-friendly. For more information) contact `" Suzanne Pollack, Minnesota Department Of Human Services, 444 Lafayette . Road, St. Paul, MN' 55155. 612/297-3634. ` -
Council Publications in :Alternative Formats: . 1] Friends: A .Manual for Connecting Persons with Disabilities and Community Members, Human Services .Research and Development Center, on audio cassette;' 2) Futurity, on audiocassette and is available' through DRAGnet and Children, Youth, and Family Consortium Clearinghouse (electronic bulletin boards); 3) It's Never Too Early, It's Never Too Lute: videotape available with closed captions; and publication available on audio cassette; . 4) Making Your Case, Braille, `computer-disk, and audiotape; 5) Shifting Patterns publication in Braille and on audio cassette; and videotape with closed captions; . 6) Minnesotans Speak Out, Summa q of Town Meetings, audio cassette; +d 7) Read My Lips: It's My Choice, on audiotape.
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Futurity
Governor's Planning Council on Developmental Disabilities , 300 Centennial Office Building 658 Cedar Street, St. Paul, MN 55155 ` .
Roger Strand, Editor 612296-4018 (Voice) 61 Z296-9962 (TDD) 612/297-7200 (FAX
. L (" Bulk Rate U.S. Postage Paid. P&lnitNo. 171 St. Paul, MN
