Civil rights and social inclusion for persons with developmental disabilities

Charlie Lakin’s explanation of his work at the University of Minnesota is straightforward yet poetic. “Our work is whatever we think will be helpful in bringing about change to benefit people with disabilities. One of the things we want to show people is that we’re in the midst of a relentless, slow-moving river of change that responsible people will want to be a part of.”  Lakin is senior research associate and director of the Rehabilitation Research and Training Center in Community Living (RTC). The center is part of the Institute on Community Integration (ICI) in the College of Education and Human Development. 

“The statistics we gather, the evaluations we conduct, the training we do, the support we provide to self-advocacy, the self-determination that we promote, the resources we identify, the innovations in service delivery that we help develop and/or describe for others—all the things we do are about helping people see what they can do to promote the full citizenship and inclusion of people with disabilities” Lakin says. “Minnesota is a wonderful laboratory for our work because Minnesotans have a strong sense of justice, believe in equality and have been at the forefront of innovations in bringing people out of institutions and into homes and valued roles in the mainstream of community life for many, many years, Lakin observes. 

How Lakin’s research in community integration works

Lakin works with ICI and community colleagues on issues related to community inclusion of people with disabilities on the national, state and local levels. He investigates the effects of public policies and resources and how they are used, and might be better used, to improve the lives of persons with disabilities.  He works with federal and state agencies to evaluate innovations and demonstrations of alternative approaches to funding, delivering and/or monitoring services.  His projects focus on issues such as housing and residential supports, recruiting, retaining, training and supervising direct support professionals, access to health services, community crisis response programs, integrated leisure and recreation, self-advocacy and self-determination and a wide range of other topics ranging from the federal Medicaid programs to skills training for outdoor adventure.  The practical nature of the work of Lakin and his RTC colleagues is reflected in the 36,000 participant hours of training and technical assistance and the more than 200,000 visitors to their websites during the past year.

How the research has been used

Thirty-five years ago Minnesota was one of the first states to embark on a movement to de-institutionalize persons with developmental disabilities. The goal was initially to move as many people as possible out state institutions, to prevent as many people as possible from ever entering them and to develop alternative education, housing, personal care, social, medical, psychological, employment and other needed services in the community.  No one then believed that this movement would lead to the closure of all state institutions, but just last year Minnesota celebrated that very outcome.

“The last step of closing the institutions would not have happened without continuous development of the community’s capacity to accommodate people with severe intellectual, physical and behavioral challenges,” Lakin says. Parents played an enormous role in creating these changes through groups like the Arc (formerly the Association for Retarded Citizens).  The justice of that movement caused professionals such as Lakin to join them to advocate for services, then for more services, then for better services. The issue became not whether people with developmental disabilities had a right to full citizenship, but how that right could be best honored and made most beneficial.  They worked together to bring in federal dollars to support community integration and to develop programs, support networks, volunteer groups, and training for those working with persons with disabilities. All the work had one purpose—to support persons with developmental disabilities to live as valued, integrated, and supported members of their communities.

“Why does social change come?” Lakin asks. “It comes because there is a perception that such change is just and fair, that it is what decent, responsible people should support.  If there is a theme to our work over the years that has made a difference, I think it is in helping people understand the remarkable things being accomplished by people who are motivated by a commitment to justice and a sense that they can make the world better.  We have had the opportunity to describe, sometimes in complicated statistics and sometimes in simple stories, what people are doing and how it has made a difference.  When other people see it, they want to be part of it too.”

Lakin is probably best known for his research and evaluation of federal and state policies and programs.  He dismisses that anyone’s contributions to changes in such areas can be quantified, but he is quick to turn to the statistics he and his colleagues have compiled for federal agencies for over twenty years to show the effects of the concerted efforts of many.  He notes for example that in 1982 total federal and state Medicaid long-term care expenditures for persons with developmental disabilities were 3.6 billion dollars and reached 141,000 people, 76% of whom lived in state institutions.  Eighteen years later in 2000, those same programs provided 19.6 billion dollars to serve 407,000 people, 11% of whom lived in state institutions.

What others say about Lakin’s work

“Dr. Lakin’s work is widely recognized as the backbone of our nation’s commitment to community living and improved quality of life for the three to four million Americans who have the most severe, lifelong disabilities,” says Sue Swenson, Commissioner for Administration on Developmental Disabilities, U.S. Department of Health and Human Services. “His contributions are quiet, elegantly simple, pervasive, persistent, fact-based and value-driven, and of enormous practical value to policymakers across the country and around the world. Charlie Lakin is a national treasure.”

Steve Larson, director of community supports for Minnesotans with disabilities in the Minnesota Department of Human Services, says Lakin “is recognized nationally as a leader in advocating for the development of community services as an alternative to institutional placements.”

The executive director of ARC Minnesota, Robert J. Brick, describes Lakin as being “in the forefront in the movement to give persons with disabilities and their families more control over the services affecting them. This self-determination approach is starting to be incorporated in many of Minnesota’s services affecting people with disabilities.”

July 2001