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"He asked me if I wanted out. I said yeah, do what it takes to get me out." Jamie Beck shared her story about how she ended up living in a nursing home shortly after graduating from high school. She says her father's stage four cancer led to her placement there. After trying to make the best of a bad situation, Jamie spoke up and told her guardian she wanted out. Today Jamie lives in a home and works part-time in the community. She was interviewed in Indianapolis in 2016.
"Now disability politics, you know, is not Republican or Democrats, it's really nonpartisan but you still have to be recognized as someone who's reliable and trustworthy," observes Jim Hammond in this 2013 interview. Working with legislators was part of his job as CEO of the Indiana Association of Rehabilitation Facilities (INARF). "INARF is the trade association for providers of services," he explains. It was a $1 billion industry in 2012, the year he retired.
Jim discusses his 34 years with the membership organization, including its strong relationship with The Arc of Indiana, the envy of INARF's counterparts in other states. He describes the pool loan program, a tax exempt financing members created in 1992, and INARF's role in establishing unified standards for provider agencies and the adoption of an independent third party national accreditation program. He recalls founder Costa Miller, who was CEO until his death in 2004, and the "fierceness of his commitment." He discusses how funding for disability services has fared under various governors and their respective political parties. Other topics include Medicaid waivers and the growing importance of technology such as video monitoring and "smart home" features in residences for people with disabilities.
"Dickerson, I finally get it," a fiscally conservative State Senator from Hendricks County remarked. "He said, 'I'm on the board of directors of the bank and we hired this fellow with a disability. I don't even know what his disability is, but he's one of our best damn employees.'" As executive director of The Arc of Indiana, John Dickerson worked with legislators for decades to "fight on behalf of parents of individuals with disabilities to make the systems responsive." John recounts the evolution of what became the second largest Arc in the country in his 2013 interview. The group emerged out of the national movement by parents who had offspring with intellectual disabilities and wanted to band together to improve the lives of their children. The organization was known as the Indiana Association for Retarded Children when it was founded in 1956. John discusses the changing names of the association as a reflection of changes in language about people with disabilities, as well as The Arc's close relationship with self-advocates.
John talks about the organization's influence on public policy. "The Arc isn't particularly well known in the general public. But we're remarkably well known with policymakers and legislators." He discusses The Arc's effort to get information to families about benefits and services, an initiative to support small businesses owned by people with developmental disabilities, and The Arc Master Trust. The latter is a mechanism enabling families to leave money to benefit their son or daughter with a disability.
John considers the leadership role Indiana has played in the disability arena nationally, despite its relatively low profile. He reminisces about the late Elbert Johns, who was a long-time executive director of Stone Belt Arc in Bloomington. John Dickerson retired as Executive Director of The Arc of Indiana in 2015.
“The Arc name is an interesting story in itself,” says John Dickerson of the history of The Arc. It was in the late ‘40s when parents across the country started organizing to discuss opportunities for their children. The first Indiana state association formed in 1956. Groups were called Parents and Friends of Retarded Children. In the 1970s, there was a movement to get rid of the “R” word, but it didn’t catch on. Finally, in the early ‘80s the name changed to The Arc.
“We have an opinion and it matters,” states Kelsey Cowley. Unfortunately, Kelsey didn’t feel many people listened to her during her school years. She says, “They just didn’t understand people with disabilities to the whole extent.” As President of Self-Advocates of Indiana, Kelsey is encouraging people with disabilities to get involved in their communities. She says, “If we can’t get the communities…to work along with us, then a lot of changes that want to be made by advocates won’t happen.” Kelsey was interviewed in 2017.
“The day for the kids was pretty packed.” Kim Davis recalls the 1970s, when school aged children with challenging behaviors stayed at the Developmental Training Center (Now the Indiana Institute on Disability and Community) in Bloomington during the week. Their day often consisted of speech therapy, small group activities, adaptive physical education. After school, they might have a recreation activity, go out into the community, or help fix dinner. The goal was to develop a home program with the school system and parents so each student could return to their home school.
Kim says, “I think that the Institute over time has really become a place where families could come and get information and I think that's a huge thing.” She describes how Institute staff help families and school systems connect. She states, “I was being a cheerleader for the teachers who just needed to know you're doing the right thing. Or here's a little tweak that you can do.” Kim shares her thoughts on the controversial facilitated communication movement. The book “Movement Difference and Diversity” had an impact on how she provided support to individuals. Kim says, “I think sometimes we forget about the impact that disability has on the human being and we want them to respond in the way we want them to respond. But we forget they have a disability and it impacts them in many different ways and it's up to us, the people without the disability to figure that out and provide that support.“
Kim talks about the importance of recognizing behaviors as communication. It requires people learn to listen differently. She also discusses her work with circles of support with students. Kim shares many personal stories throughout her 2013 interview. She retired from her position as research associate at the Indiana Institute on Disability and Community in 2012.
New digital media have opened a creative landscape "where it's not someone else speaking on behalf of the person with the disability - you don't have the teachers or the preachers and the social workers pushing the agenda." Lawrence Carter-Long, a Terre Haute native, is recognized nationally as an authority on media and disability. His perspective on film was informed by his experience curating and co-hosting the Turner Classic Movies festival, The Projected Image: A History of Disability in Film. He was Public Affairs Specialist for the National Council on Disability when he was interviewed in Indianapolis in 2015.
When talking about services in the ‘60s and ‘70s, Margaret Blome says, “There was very little available for people with multi-handicaps.” Margaret did find a therapist at Crossroads Rehabilitation Center in Indianapolis who worked with her daughter, Barb, on learning to crawl, how to drink from a straw and other basic skills. When Barb was kindergarten age, Margaret found it difficult to find educational opportunities for her daughter. At the St. Mary’s Child Center, Margaret was introduced to other mothers who had children with disabilities. They formed a support group that met twice a week for two years. Margaret says, “I think overall, I was pretty supported.” Her parents said they would back any decisions she would make. Over the years, Margaret’s neighbors have been supportive. She says, “I said I couldn’t move. I have to educate another whole neighborhood.”
“Barb was born in 1962 and at that time, there was very little available for people who were multi-handicap,” states Margaret. In the early days, Margaret turned to Crossroads Rehabilitation Center for services for her daughter. After attending St. Mary’s Child Center and Noble up to the age of 11, Barb entered the public school system at the Cold Springs School with other children with disabilities. Margaret says, “She had a really good experience in that program. Then she aged out of it. She was 18 and I had no services for a year.” After a year, Barb went back to Noble and has been then ever since. Margaret discusses how Barb spends her day. She enjoys music therapy, riding a stationary bicycle, and going for walks at the mall or park.
Margaret feels fortunate with the support her family has received from doctors, friends and neighbors over the years. She says, “My neighbors have been supportive. I said, I couldn’t move, I’d have to educate another whole neighborhood.” Today, Barb lives in a waiver home with two roommates. She does visit her parents often on weekends.
Margaret also discusses different parent groups, person centered planning and Barb’s future. Margaret shares her concerns about services. She says, “I think there's still room to grow but we also need to make sure we don't lose the services we have now.”
On December 24, 1958, Mary Lou and Don Melloy were told their daughter Cindy should be placed in an institution. Mary Lou said, “My response was that they didn’t know what they were talking about…a very unhappy, aggressive mother left the room.” Instead, the Melloys took Cindy home and she started receiving services from Easterseals in Evansville, Indiana.
The Melloys eventually moved to Indianapolis. When Cindy was five years old, Mary Lou visited every school corporation in Marion County trying to find the best school for Cindy. Mary Lou decided Washington Township would be the easiest school to "strong arm" into taking her daughter. Cindy attended school at Washington Township until she was 18. After leaving school, Cindy went to the Noble workshop. When a new executive director came in wanting to do away with the workshop, Mary Lou was ready to organize a parent protest. However, a day after attending a meeting with the director, she called the director to tell him to find Cindy a job. For the next 20 plus years, Cindy worked for a pharmaceutical company until her job was outsourced.
“If something happened to Don or I, everybody that works with Cindy, my kids, my neighbors, everybody knows to go to this one spot and everything is in there,” explains Mary Lou of the death folder she maintains. Important documents such as birth certificate, power of attorney and trust fund papers are included in the folder.
Mary Lou also discusses staffing issues, funding, and her parent advocacy work. She says, “I was very busy.” A few of her activities included planning Christmas parties, attending conferences, arranging speakers for meetings, and advising parents. Mary Lou was interviewed in 2017.
"I couldn't see myself making a career standing bagging somebody's groceries," Melody Cooper explains. Starting her employment at Goodwill Industries and then at a Meijer store, Melody was hired by The Arc of Indiana. She attributes her career growth directly to Partners in Policymaking training that led to her becoming active in Self-Advocates of Indiana (SAI). After SAI's Betty Williams encouraged her, Melody had started attending meetings in 2000. "So yes, I have come a long way." She was interviewed in Indianapolis in 2013.
Mike Furnish, President/CEO of Special Olympics Indiana, was interviewed in 2013. Here he shares a brief history of the creation of the not-for-profit organization that provides sports training and athletic competition for children and adults with intellectual disabilities.
The first Special Olympics games were held at Soldier Field in Chicago in 1968. Athletes from the United States, Canada and France participated in the games. In 1969, a group of volunteers organized the first Special Olympics Indiana games in Indianapolis. Mike Furnish, President and CEO of Special Olympics Indiana since 2007, started his involvement with Special Olympics in 1973 as a volunteer basketball coach. Mike will retire from Special Olympics Indiana in December, 2017. He was interviewed in 2013.
Globally, Special Olympics offers at least 40 different sports. “The whole premise is that no two people are alike in their interests or abilities,” explains Mike. Special Olympics does not have an off-season. In addition to the summer games held on the campus of Indiana State, there is an annual winter games with downhill skiing, ice skating and snowboarding. Special Olympics Indiana has a small staff that coordinate the events, but as Mike explains, “One thing that characterizes our organization today is that we really are an organization of volunteers.”
As there have been paradigm shifts in services, Special Olympics has changed over time. In 1988, Indiana was one of the first states to pilot test the Unified Sports program. The program brings together people with and without disabilities to train and compete against other unified sports teams. Mike says, “It was timely in the sense that that had paralleled what was taking place in schools as kids were moving away from special education settings into broader, more general settings.”
Mike describes how Special Olympics Indiana has been a forerunner in the Special Olympics movement. Indiana introduced ballroom dancing and flag football as Special Olympic sports. In the late 1990s, the Athlete Leadership program was developed. A few of the program’s topics include public speaking skills, participation on committees, coaching techniques, and rules for officiating.
Looking toward the future, Mike discusses the need for Special Olympics Indiana to promote healthier lifestyles. Mike says, “We find when we have done health screenings at our events, that 7 out of 10 of our athletes have an acute medical problem on the day they're there.” Special Olympics Indiana is reaching out to the medical community; providing healthy living training to athletes and volunteers; and targeting children age 2 to 7 with a program called Young Athletes. Mike explains, “It’s great stuff for sports, but it's great stuff for life when a person at that age begins to learn how to maintain their balance and do some of the basic things that sometimes just are ignored because people think they can't.”
“If you want to talk about a typical day for a student with a disability, you almost have to talk about what kind of disability to be honest,” explains Nancy Kalina. A former research associate at the Indiana Resource Center for Autism, Nancy worked at Bloomington North High School in Bloomington, Indiana as a work-study coordinator from 2000 to 2011 and helped with student transitions out of high school.
She describes the certificate, diploma and honors tracks available to students. Nancy explains the peer-tutoring program. She says students may help with academics, assist with an in-school job or be a bridge builder within a class. Circles of support are another option schools have used to benefit students. In addition to transition coordinators, Nancy feels the school systems need someone who could educate parents starting in the 8th grade on the various components of transitioning from school to adult services. Teachers know about curriculum and Individualized Education Programs (IEPs), but not necessarily how Vocational Rehabilitation Services work or the importance of the Medicaid Waiver.
Nancy discusses her experiences with facilitated communication, a type of augmentative communication. She address some of the controversies surrounding the practice. She also shares thoughts on training needs for professionals entering the field of disabilities. Nancy was interviewed in 2013.
"We had legislators who came in and talked to people about how to communicate with a legislator, how to write to legislators." The Indiana Governor's Council for People with Disabilities (GCPD) had its first Partners in Policymaking graduation class in 1991. Partners in Policymaking was a leadership training program for adults with disabilities and parents. In this video, retired GCPD Executive Director Suellen Jackson-Boner, Paul Shankland, Betty Williams, and Judy Patterson talk about the role of the program and its impact on graduates. The program was created in Minnesota and adapted nationally.
In 1964, Paul decided to interview at the Fort Wayne State School as a recreation aide. They had football and baseball games, dances, and a summer camp. Although these activities were fun, the experience was different in retrospect. The daily living of getting up, bathing, eating, and going to bed was very regimented. Life was miserable for the residents. Paul saw a lot of mistreatment of residents during his eight years at (the renamed) Fort Wayne State Hospital and Training Center.
After leaving the hospital, Paul worked at the Division on Mental Retardation and Department of Mental Health. Part of his job was to bring new ideas to the disability field. He helped introduce group homes to Indiana in the 1970s. In developing regulations for group home operations, Paul and colleagues were concerned the institutional model would be adopted by the group homes. Paul states, “A lot of that proved true – and it was again people with good intentions, or at least they thought they had good intentions.” Paul discusses initiatives funded by the Indiana Governor’s Council for People with Disabilities. He believes the most important project the Council ever funded was Partners in Policymaking. The program brings together people with disabilities and family members for eight weekends over the course of a year to develop leadership skills. He explains how the Council evolved when Suellen Jackson-Boner became the administrator.
When asked to identify the biggest changes in the disability field over his 30 plus years, Paul stated the closing of the institutions. In addition, Paul shares his observations on community attitude changes. Paul retired from the Indiana Governor’s Council for People with Disabilities around 2009. He was interviewed in 2013.
It was a "stark" and "demoralizing" environment. From 1977 to 1980, Randy Krieble worked at Muscatatuck State Hospital and Training Center, as it was known at the time. In this video excerpt from a 2012 interview, he shares what a day in the life of a person living there might have been like in the late 1970s. Later, as a state official, Randy facilitated the closure the institution, located in Butlerville, Indiana. The last residents left Muscatutuck State Developmental Center in 2005.
"People coming into the business today, I can't imagine them seeing the advancement and the progress that we saw." Randy Krieble talks about witnessing the evolution of institutional custody and control of people with disablities into community-oriented living arrangements offering choice and opportunity. Randy worked for the State of Indiana in positions related to disability starting in 1970. Forty-one years later he retired as assistant director of Indiana's Family and Social Service Administration, Division of Disability. In this 2012 interview, Randy discusses his experience working with people with intellectual/developmental disabilities inside several state institutions, and how as a state official he returned to one of them to effect its closure.
From 1977 to 1980, Randy worked at Muscatatuck State Hospital and Training Center, starting in a behavior modification unit. He describes the dehumanizing conditions he found there, some of which eventually led to the institution shutting its doors in 2005. Randy describes the complexity of the transition process, during which time he lived at the Center during the week. There were strong community and family reactions to the shut down, and extensive efforts to find appropriate community placements for its residents. Randy also discusses the evolution of services for people with disabilities in Indiana and the leaders and advocates who contributed to those changes.
“He put me in the nursing home, and I didn’t like that very much,” explains Ruth Ann. When Ruth Ann’s grandmother passed away, her father was unable to care for Ruth Ann and placed her in a nursing home. Ruth Ann found it depressing. While attending the New Hope workshop, Ruth Ann started questioning a friend about what it was like to live in a group home. Ruth Ann decided to tell her caseworker she wanted to move to a group home, and her father agreed to the move. After living in the group home for a while, Ruth Ann was ready to try supported living. When she was told no because she needed too many supports, she contacted a lawyer to help her move out. Eventually, Ruth Ann moved into a home with two other roommates, with staffing 24 hours a day. She was interviewed in 2017.
A member of the Fort Wayne neighborhood association where a new group home was going in telephoned Steve Hinkle. "'You know,' he said, 'just three houses down the road, there's a Cadillac that sits in a driveway.' And I said 'Well, I think that's really important because I've got a new van that's going be sitting there and I don't want it to be a sloppy neighborhood.'" Starting in 1976, Steve was instrumental in placing former residents of Fort Wayne State Developmental Center into some of Indiana's first group homes. Steve was President/CEO of Easter Seals Arc of Northeast Indiana for 34 years. In this video excerpt of a 2012 interview, he describes early group home development as both an exciting time of transition and a struggle with barriers such as zoning regulations and neighbor attitudes.
“I came back on Monday and one of the clients had a broken limb and nobody knew how it had occurred,” explains Sue Beecher of a visit to Muscatatuck State Developmental Center. In 1998, Sue was working for Indiana Protection & Advocacy and was assigned to monitor Muscatatuck. She witnessed the care for residents became progressively worse. In a 2013 interview, she shares multiple stories of abuse and neglect she found during her visits to the institution. The Center located in Butlerville, Indiana closed in 2005.
"When I started in 1977, when people were admitted they brought with them what was called their death bag." The bag contained the clothing that residents of New Castle State Hospital were to be buried in. Sue Beecher recalls her employment at the institution in New Castle, Indiana for people with seizure disorders. Sue went on to work for Indiana's newly established Bureau of Developmental Disabilities Services (BDDS) and Indiana Protection & Advocacy (IPAS), where she retired prior to this 2013 interview. (IPAS has since changed its name to Indiana Disability Rights.)
Sue talks about the New Castle procedures that patients underwent without consent, and the restraints and aversive measures that were used to control their behaviors. Years later, as an IPAS representative on Muscatatuck State Developmental Center's Human Rights Committee, she again witnessed violations of residents' rights. It was the late 1990s, prior to Muscatatuck's closure. "You cannot walk onto a unit and see visible injuries on 12 or 14 people that weren't there the week before and not suspect something is terribly wrong there. And these folks were non-verbal, so they're not going to be able to tell."
As IPAS' work expanded via federal grants, Sue was instrumental in getting the traumatic brain injury and PABSS (Protection and Advocacy for Beneficiaries of Social Security) programs up and running. She relates her satisfaction in those accomplishments and her pride in this independent state agency charged with protecting the rights of Hoosiers with disabilities. "In Indiana, we've gone ahead and sued when we needed to, we've never backed down." In 2011, Sue received the Terry Whiteman Award for her work at IPAS. Sue also discusses the development of group homes and the intensive effort to open new group homes between 1989 and 1991 while she directed the Indianapolis BDDS office.
In 1998, Indiana’s “317 Commission” of consumers, advocates, and state officials published "A Comprehensive Plan for the Design of Services for People with Developmental Disabilities", addressing the need for services to support people with developmental disabilities in their homes and at work. An expose of abuse at New Castle State Developmental Center had provided the initial impetus for action. The "317 Plan" marked a significant step in Indiana's history of providing services to people with disabilities. John Dickerson, David Mank, Randy Krieble, and Bettye Dunham talk about the impact the Plan had on funding and waiting lists for community based services, and on shaping those services.
"We'd learned that, it's no surprise, people with disabilities were the most underserved group in the mortgage and lending industry." In this video, Deborah McCarty explains the launching of the Back Home in Indiana Alliance in 1997. The original focus of the Alliance was on increasing low rates of home ownership among people with disabilities. Since then it has worked to advocate for a larger supply of integrated housing in the state that is both affordable and accessible. Deborah discusses the partnerships that have been instrumental in the Alliance's work and in its recognition by the US Department of Housing and Urban Development as one of 100 best partnerships in the country. Deborah, who is Executive Director of the Back Home in Indiana Alliance, was interviewed in 2017.
"We were asking teachers to do some things they had not done before, to interact and support and teach kids that they didn't have a lot of experience doing in the past." An educator and a parent discuss the beginnings of integration of students with disabilities into the public schools in the 1970s, and the impact of the 1975 Education for All Handicapped Children Act. A compilation of excerpts from interviews with Pat Barber and Dixie Patterson.
"The biggest thing is the values that started with the Deinstitutionalization Project and went on through all of our projects about consumer advocacy, self-determination, empowerment to people with disabilities, language use... just totally different values about people with disabilities." Vicki (Victoria C.) Pappas arrived at the Developmental Training Center (D.T.C.) in Bloomington as a graduate student in 1974. The D.T.C. was the the original name of the Indiana Institute on Disability and Community (IIDC). Vicki retired as director of the IIDC's Center for Planning and Policy Studies the year prior to this 2013 interview.
Vicki discusses the history of the IIDC and significant activities involving government and other partners in the state of Indiana. She talks about her experience with the Deinstitutionalization Project directed by Mike Tracy in the early 1970s, the legacy of former Director Henry J. Schroeder, and the impact of important legislation in shaping the work of the IIDC, including passage of the Americans with Disabilities Act and its implementation in Indiana. She also discusses voting participation and access, developing the state disability plans with the Governor's Council for People with Disabilities, and the creation of the IIDC's Collaborative Work Lab for digitally assisted group decision making.
Andy Imlay, a part-time stand-up comedian who performs across southern Indiana, shares stories about life, school, and relationships, and using the power of laughter to address common misconceptions about people with disabilities. Andy is from Richland City, Indiana, which is southeast of Evansville. Diagnosed with cerebral palsy at 18 months, he was “mainstreamed” into regular classes from first through twelfth grades in the South Spencer School Corporation. Andy was interviewed in Indianapolis on December 5, 2016.
