INFORMATION PACKAGE ON MANAGED CARE
AND LONG-TERM SUPPORTS
FOR PEOPLE WITH DEVELOPMENTAL DISABILITIES

PREFACE

Managed care is still new. We have little experience with system wide managed care approaches. The jury is still out, so to speak. Time will tell how managed care affects people with developmental disabilities and their families.

Because of the uncertainties surrounding the long-term impact of managed care, we have included in this "information package" a range of reprinted articles and resource materials providing different kinds of information and representing different opinions. I will briefly review these and explain why we decided to include them as resources.

The "Position Statement on Managed Care and Long-Term Supports in Developmental Disabilities" was originally developed jointly by the Center on Human Policy (Steve Taylor), the Robert Wood Johnson National Project at the Institute on Disability at the University of New Hampshire (Jan Nisbet, Don Shumway, Richard LePore), and Responsive Systems Associates (John O'Brien). The final version was based on suggestions from Dennis Harkins of Wisconsin's Bureau of Developmental Disabilities Services, John Agosta and Mady Kimmich of the Human Services Research Institute, Patty Smith of the National Parent Network on Disabilities, Charlie Lakin and Bob Prouty of the University of Minnesota, Cathy Ficker-Terrill of the Ray Graham Association, Janna Starr of the United Cerebral Palsy Association, Stan Herr of the University of Maryland at Baltimore Clinical Law Office, and Gary Smith of the National Association of State Directors of Developmental Disabilities Services, Inc. (although these persons do not necessarily endorse the wording of the final version). This position statement is intended to summarize some of the principles and values that should underlie managed care if and when it is implemented.

The brief monograph on "Keeping the Faith" was published by the National Association of State Directors of Developmental Disability Services Inc. (NASDDDS). NASDDDS has been a leader in developing materials and position statements addressing the statewide implications of managed care and is a key national resource in this area.

The following two articles by Theodore A. Kastner, Kevin K. Walsh, and Teri Criscione, which are forthcoming in Mental Retardation, provide the most comprehensive overview of managed care and technical elements in the field of developmental disabilities written to date. These are essential reading for anyone concerned about managed care.

The next article by John Ashbaugh of the Human Services Research Institute and Gary Smith of NASDDDS is an important cautionary note that, in our opinion, must be taken seriously by anyone concerned with developmental disability services.

The final series of articles are reprinted from Mouth. Although these do not deal directly with long-term developmental disability services, they are thought-provoking and raise a series of concerns from the broader disability rights community.

At the conclusion of this package, we list some resource organizations which can be contacted for additional, and updated, information on the status of managed care. This list is not intended to be exhaustive, but is designed to point readers to some of the major organizations working in this area.

Julia Searl and Pam Walker assisted in the development of this information package. Bonnie Shoultz and Rachael Zubal provided guidance and assistance in producing it.

We wish to express our appreciation to Gary Smith, Theodore Kastner, Kevin Walsh, Teri Criscione, and John Ashbaugh for their permission to share their excellent materials with a broader audience. In addition, we wish to thank Stephen Stidinger of the American Association on Mental Retardation for permission to reprint the articles published or forthcoming in Mental Retardation and Tom Olin and Lucy Gwin of Mouth for their willingness to allow us to reprint the three articles published there.