Past, Present, and Future

Remarks by David R. Johnson, Director, at the Institute on Community Integration (ICI) 25th Anniversary Celebration, November 5, 2010

Photo of David R. Johnson, Director of the Institute on Community IntegrationI want to thank all of you for coming this evening to this wonderful celebration of ICI's 25th anniversary. I’ve been asked to offer a brief presentation on the progress that has been made to support individuals with developmental disabilities and their families in our communities. There are a couple of ways to approach a topic like this. I am going to step away from the comfort of using PowerPoint slides and offering you the usual academic presentation of timelines and major events in the field. Instead, I think it is important sometimes to take stock and reflect on what has occurred over time through an understanding of one's personal experience.

As many of you are aware, I grew up with a brother with a significant developmental disability. Many of you here, in fact, also have that experience in your immediate family, as well as in other relationships and personal situations. In many ways we share a common experience as people trying to find our way to best support those we love and care for. This life experience has significantly influenced my path both in terms of my career and my personal life. Now as I share some of this personal experience with you this evening, I hope you'll think about the past in relation to the present and to the progress made, and walk away from here seeing the future as only a continued opportunity for change.

Vance Johnson, my brother, was born August 11, 1945 to Evelyn and Evert Johnson, my parents, at Abbott Hospital in south Minneapolis. Evert was born in 1908 in Molby, Sweden and immigrated to the U.S. in 1930 (perhaps not the best choice of years to make the journey to establish a new life in this country). Evelyn was born in 1918 in Chicago, and her mother, my grandmother, also came to the U.S. from Forshaga, Sweden 1914.

Vance was, in every respect, born healthy and normal. Life was good. At nine months he received a small pox vaccination and on that same day experienced a severe reaction to the shot resulting in a high fever, a form of viral meningitis. The doctor was called, but not available to come that evening (doctors still made house calls at that time); he offered assurances that the condition was likely to be colic and not to worry. The diagnosis underestimated the severity of Vance's situation. Over the next couple of days more intensive medical treatments were sought; however, the fever had caused irreversible brain damage. Things happen. Maybe they shouldn’t have happened in this case, but they did. So here the saga begins.

Now the full implications of how all this affected Vance developmentally could not be immediately understood. It didn’t take long, however, to understand that Vance was not developing normally – he was not responding or communicating as would be expected, or even walking. Medical advice was sought frequently and their questions at that time were centered on could this be treated or cured? Would his condition improve in any way? There were no real answers to this. He was officially diagnosed with the condition of cerebral palsy, and the best medical understanding of the situation of that time was that his condition was irreversible, and that he would likely remain at the developmental level of nine months.

So what do you do? What are your options? You are now in the late 1940s with this situation. Well at that time there was...

  • No formal training of pediatricians on developmental disability, such as there now is at the University of Minnesota through ICI's direct efforts.
  • No interdisciplinary teams of professionals to support you at that moment when you become faced with this situation as parents. No teams to guide you from infancy into early adulthood as there is now with the Leadership Education in Neurodevelopmental Disabilities (LEND) program that was recently established between the Medical School and ICI.
  • No social workers or case managers with an understanding of developmental disabilities or services needed.
  • There was no Center for Early Education and Development, as we have at the University, to provide you information and consultation.
  • There were no formal family support programs.
  • No PACER Center to advocate for services.
  • No special education programs mandated to serve you.
  • No community-based services movement and federal legislation such as Medicaid and the Home and Community Based-Services program.

The choices before you were two-fold: either place your child in a state institution or keep them at home with family. My parent’s chose to care for Vance at home. The reasons why or what they were thinking at that period of time is not completely clear to me. Let’s just say their decision rests somewhere between unconditional love for a child and fear of the unknown. Believe me, there was plenty of pressure to make the other decision. Their pediatrician advocated strongly for placement at Cambridge or Faribault state hospitals, stressing to them the need for 24/7 medical attention, somehow viewing the home environment as unacceptable and imposing upon them a life-changing burden. It was not only physicians; pressure came from families who made the decision to place their child in an institution, relatives, and even neighbors. Let me assure you that this pressure did not stop once the decision was made, initially.

I recall, growing up, repeated frustrations my parent’s would express at immediate neighbors who would repeatedly express their viewpoint that Vance would be better off in an institutional setting. It was during this period of the late 1940s to the mid-1960s that state institution populations increased dramatically. By the mid-1960s U.S. public institutions housed more than 195,000 individuals with developmental disabilities and almost half of these were children age 18 and younger.

Leading into the 1950s there was still nothing on the horizon that would suggest changes or improvements in the availability of services and supports for Vance. By 1950, we do know that parent groups representing some 19,000 parents were active. My mother was in one of them, becoming a member of the fledgling organization Minnesota Association for Retarded Children in 1951. The primary reason why she chose this route was common to many parents in similar situations; it was a place to invite (typically) physicians, to learn more about a child's condition, and to associate with other parents in a similar situation.

As we know, it was during the 1960s-1970s that things began to change. Exposés such as, “Christmas in Purgatory”, "Willowbrook," and the work of Luther Granquist and others here in Minnesota who exposed conditions in our own state hospital system, were undertaken. Several major court cases also came to light confirming the rights of children with disabilities to public education and other services and supports. Medicaid legislation came into being in 1965. The civil rights legislation of the 1960s extended rights to persons with disabilities in areas of special education and employment and so on.

And during this period, Vance remained at home. Well cared for, happy and healthy, with my other brother Rick and I growing up with him. Let me not skip over this period so quickly without commenting on the situation further. Caring for Vance was 24/7, 365 days a year. There were no in-home supports, no respite care to give my parents a break. Sometimes things come full circle: Our son Travis, now in his mid-20s, is looking to establish his own career is providing direct support to two adolescents with autism in our community. I can’t imagine what that would have meant to my parents, my mother in particular who took on this responsibility. There simply was no break.

Out of this experience also came an extreme distrust of the medical community and a similar distrust of any state or county interventions assistance. Services were beginning to evolve, group homes were being developed, options were being created for day habilitation programs, and ways to engage individuals with developmental disabilities in the community were emerging. And you were advised to legally disown and make your child a ward of the state. At this point, you reject without hesitation such advice. Perhaps a form of denial seeps into the picture and you carry on day to day with what you have been doing for three, almost four, decades—you care for your now- adult child as you have before. Even though Medicaid was in place and Social Security benefits were available for Vance, my parents rejected this as a form of governmental interference in their lives, not as a matter of disagreement with federal policies, but rather out of fear as to what it would mean to become involved with social service agency professionals.

Things began to dramatically change in 1980. My mother passed away suddenly in March of 1980 at the age of 61 from an aortic aneurism. My father, then 71, had been retired for many years prior due to a variety of medical conditions which left him in a highly questionable position of being able to provide ongoing in-home care and support for Vance. So now what?

My brother and I assumed legal guardianship of Vance, and began the process of trying to figure out how to first keep him at home with my father for as long as we could, and then to navigate the system of services that would provide for him a home-like environment where he could live, access to medical professionals who could address his ongoing healthcare, and a place where he would be with people who we could trust to care about him. Now, I was not without some understanding of the service system as I tried to figure out the next steps. Initially we attempted to put together a package of in-home supports and services to permit Vance to remain with my father as long as he could. There were really few options. These options ranged from some in-home visiting nursing services, to live-in arrangements offered through Lutheran Social Services (which were highly problematic), to Meals-on-Wheels, to church volunteers who provided in-home visiting services. This became a day-to-day effort to keep these services together and seldom were they ever together.

The next step was to find a more permanent situation in the community for Vance. We speak often about how individuals with disabilities and others fall through the cracks in terms of their eligibility for community placements. Well, Vance’s situation was quite unique. Here’s an adult, with an assessed IQ of 20, who could not be successfully toilet trained, could not dress or feed himself. The process was one of contacting group home providers throughout the community. Well I think I contacted every one of them, and for varying reasons he was deemed ineligible for all of them. In some, his developmental level could not be managed; in others the fact that he was not toilet trained, or could not dress or feed himself, became reasons for denial.

Ultimately, by 1982, I found myself in the fourth district court moving through commitment proceedings which later placed Vance at the Faribault Regional Treatment Center. The system of community-based services at that time had simply not evolved far or fast enough to accommodate his needs within a community setting. He remained there for about seven years until a point was reached where we challenged the placement. A formal hearing process ensued with Luther Granquist serving as attorney for Vance.

I also want to mention and thank Joe Reichle for serving as a consultant for the case. While the details of the legal challenge are interesting, the outcome of the hearing process is far more important. A community option was developed and he was placed in a residence with three other individuals in the Twin Cities area. His options also expanded to day program participation, health care which he required, and a general sense he was with those who cared for and about him. None of this would have occurred without continued development of community services and supports. Vance remained in that home until he passed away in 1998.

ICI has been a part of the progress made for people with disabilities and their families in our communities over the years, and will continue to be a part of it in the future. I was looking over a video segment about ICI that was developed a couple of years ago and I found a statement made by our first director, and now University President, Bob Bruininks that to me describes very well what ICI is. He said, “ICI will continue to be youthful. It will never reach middle age. It will constantly find new energy, new frontiers, new issues to confront because it has this sort of spirit of innovation, this deep and enormous commitment to really making the world a much better place for people who need really some extra assistance and support.”

This organization is well positioned to move into the future. We have some of the most talented, nationally and internationally recognized staff that one could hope to assemble moving into the future. We have an annual budget exceeding $20 million dedicated to more than 70 projects, including six regional and national centers. Joining us in this work are more than 300 partners.

We will remain committed to ICI’s, the college's, and the University’s training mission. Annually we have supported approximately 45 graduate students from disciplines such as education, social work, public health, nursing, and others. We will continue to work across the lifespan, from early childhood to adult services. With the Center for Early Education and Development, new areas of research and professional development will be created to ensure child care professionals have access to the best training possible, that parents have access to information that supports them in working with their child, and to ensure that sound public policies supporting infants, toddlers, and pre-school age children are fully in place. We will also expand our efforts with the Medical School’s Division of Pediatrics and Adolescent Health to expand the interdisciplinary training of future professionals.

Our work in the area of K-12 education has shifted from the design and development of curricula to promote inclusive educational practices, to working at the broadest national and state levels to ensure that students with disabilities have greater access to the general education curriculum. The North Central Regional Resource Center, now in its second 5-year funding cycle, is regarded a leader among such centers in bringing about new ways of approaching changes in state and local special education policies and practices. This group has developed new and innovative ways in helping states and local districts to use data in improving services for children and youth with disabilities. The National Center on Educational Outcomes (NCEO), now in its 21st year of operation, is regarded as the national source of data and information on state assessment and accountability systems, accommodations and supports, and alternate assessments. A remarkable achievement was noted a few weeks ago when we received notification of a $45 million award from the U.S Department of Education’s Office of Special Education Programs to NCEO. It is a remarkable accomplishment from several perspectives. It clearly marks the national recognition of the talent, expertise, and capacity of NCEO and its staff to bring together 19 states and several universities and national organizations to move forward on the development of an alternate assessment system for students with the most significant cognitive disabilities. This is also the single largest award ever granted by the Office of Special Education Programs and to my knowledge the largest award ever received by the College of Education and Human Development. There are many other developments within this school age group, but these are just a couple.

The Transition group at ICI is also well positioned to make a substantial impact on the future of youth with disabilities who make that transition from school to adult life. This group at ICI has managed three national technical assistance centers; conducted dozens of research studies on education, postsecondary education and employment; and developed nationally-disseminated curricula focused on the challenges of Native American youth as they prepare for and make the transition to adult life.

In 1990, we began in partnership with the Department of Educational Psychology to undertake research to examine the question of student engagement and how it plays out in terms of student’s academic, behavioral, and successful school completion. "Check & Connect" has emerged as a fully established intervention that was, in 2006, recognized by the Institute for Education Sciences' "What Works Clearinghouse" and is one of the highest rated interventions in the nation for middle school and high school youth. "Check & Connect" has found its way into virtually every state, with hundreds of schools and school districts adopting this model for use with students with and without disabilities. Recently, we received notification from the Institute for Education Sciences that ICI, with Mathematica Policy Research Inc., will now undertake the largest single study of special education students exiting public schools in the United States. Fifteen thousand students will be studied and followed to assess their adult life experiences. We are more than pleased with this opportunity.

Adult and community services have been at the forefront of ICI's work since its inception. The many studies that have been conducted by this group on the community living status of persons with developmental disabilities is among the most cited literature that is routinely drawn upon by Congress, state legislatures, professional associations, and advocacy organizations. The College of Direct Support will continue to grow. At last report, this national system of online training for direct support professionals is in 32 states, providing training to more than 230,000 individuals daily, all in all this totals 3,750,000 hours of training. Other areas of focus in the Research and Training Center on Community Living and the adult services area focus on quality health care coordination, mental health, employment, aging...and the list far exceeds what I can mention here.

The past, present and future embody quite a story. ICI will remain youthful. We will continue to embark to new frontiers, be innovative and responsive, and above all, remain committed and passionate about this work. I thank all of you for all that you do. Thank you!