This information package includes several reprints that we are unable to produce here on our web site. We have indicated contact information for each resource, or you can obtain a complete copy of this information package by contacting the Center on Human Policy.
- A Position Statement on Managed Care and Long-Term Supports in Developmental Disabilities – The Center on Human Policy at Syracuse University; Self-Determination for Persons with Developmental Disabilities, the Robert Wood Johnson National Project and the Institute on Disability at the University of New Hampshire; and, Responsive Systems Associates
- Keeping the Faith: System Change, Managed Care, and Long-Term Supports for People with Developmental Disabilities
National Association of State Directors of Developmental Services, Inc.
113 Oronoco Street, Alexandria, VA 22314, (703) 683-4202
- Overview of Implications of Medicaid Managed Care for People with Developmental Disabilities – Theodore A. Kastner, Kevin K. Walsh, and Teri Criscione Published in the August issue of Mental Retardation.
- Technical Elements, Demonstration Projects, and Fiscal Models in Medicaid Managed Care for People with Developmental Disabilities – Theodore A. Kastner, Kevin K. Walsh, and Teri Criscione Published in the August issue of Mental Retardation.
- Beware the Managed Health-Care Companies – John Ashbaugh and Gary Smith Reprinted from the June 1996 issue of Mental Retardation.
- Selected Articles from Mouth Magazine – “McManaging Your Health” by Billy Golfus and Wendy Brower; “Managed to Death” by Josie Byzek; “Getting Up to Speed”
- Disability, Aging, and Long-Term Care Policy
The Office of Disability, Aging and Long-Term Care Policy (DALTCP) is charged developing, analyzing, evaluating and coordinating HHS policies and programs which support the independence, productivity, health and long-term care needs of children, working age adults and older persons with disabilities.
- Center for Managed Long Term Supports for People with Disabilities
Human Services Research Institute – Salem, Oregon
The National Association of State Directors of Developmental Disabilities Services – Alexandria, Virginia
This ongoing project involves the provision of training and technical assistance to agencies interested in developing, adapting and using managed care strategies in the delivery of long term supports to people with disabilities. It is a collaborative enterprise of the Human Services Research Institute and the National Association of State Directors of Developmental Disabilities Services. The Center was created in 1995 recognizing the inherent value, risks and inevitability of managed care approaches. It is founded on a common commitment to further managed care approaches that advance the inclusion, self-sufficiency and self-determination of people with developmental disabilities.
- Center for Vulnerable Populations
The National Academy for State Health Policy – Portland, Maine
The Institute for Health Policy Brandeis University – Waltham, MA
Co-directed by the National Academy for State Health Policy and the Institute for Health Policy at Brandeis University, the Center for Vulnerable Populations supports research, policy analysis, and best practice studies regarding vulnerable populations and disseminates its work to state health policymakers. The Center is funded by a grant from the Henry J. Kaiser Family Foundation.
- Families USA
Families USA is a nonprofit organization that runs many different projects on health care, including one on managed care. Their Managed Care Consumer Protection Project provides information, technical assistance and training to other organizations who provide health care to a variety of consumers. The organizations in the community learn to monitor managed care plans and assist consumers with identified problems. Families USA also serves as a clearinghouse for public policy on a variety of health care issues, including managed care. While their focus as an organization is not specifically on people with developmental disabilities, their training and information can be applied in this area, due in part to the agency’s goal of working with a specific community or group and the concerns they voice.
- Institute for Health and Disability
The Institute for Health and Disability is a network of programs for children and youth and their families designed to improve the health and functioning of children and youth within the context of their families and communities. These projects share a focus on young people from birth to 24 years of age, and share the fundamental belief that the needs of children with chronic illness or disability share many of the same needs regardless of their medical or health condition.
The Institute for Health and Disability includes the Center for Children with Chronic Illness and Disability, a rehabilitation, research and training Center dedicated to the study and promotion of the psychological and social well-being of children with chronic health conditions and their families, and the National Center for Youth with Disabilities, an information, policy and resource center for youth, plus a host of other projects and programs in the areas of research, training and information dissemination.
- MCARE: National Clearinghouse on Managed Care and Long-Term Services and Supports for Adults with Developmental Disabilities and Their Families
Institute on Disability, University of New Hampshire
The Institute on Disability at the University of New Hampshire has established a National Clearinghouse on Managed Care and Long Term Services And Supports. The MCARE clearing house will target national, state, and local policy-makers as well as advocates for people with developmental disabilities and their families, working to assure that the values incorporated into many of our systems, such as self-determination and community inclusion implemented with flexibility and innovation, are embedded in managed care arrangements. MCARE will work to insure that policy-makers, advocates, families, consumers, researchers, and others have the most up-to-date information available. Information on waivers, managed care arrangements, quality outcomes, and contract specifications will be compiled and made available using the Internet and more traditional forms of print and telecommunications. Additionally, on-line conversations and conferencing will be organized to assist people in their analysis of current trends and emerging issues.
- National Association of Child Advocates – Washington, DC
The National Association of Child Advocates (NACA) is an organization that is devoted to the creation and sustenance of state- and community-based child advocacy organizations. With 51 member organizations in 40 states and seven cities and communities, NACA serves as the hub of information exchange among existing and emerging multi-issue child advocacy organizations at the state and local levels. Most of NACA’s member organizations are providing critical leadership on children’s health issues in their states and localities. Some are leading broad-based coalitions addressing the many serious issues arising from the rapid transformation in health care delivery systems that is occurring across the country, including the increasing reliance on managed care. Others are engaged in active partnerships with pediatricians, school nurses, and other health care providers concerned about the health and well-being of children. Still others are leading the fight for expansions in health insurance for children through targeted children’s health insurance initiatives or statewide comprehensive health care reform. NACA is also the author of “Medicaid Managed Care: An Advocate’s Guide for Protecting Children.”
The topic of “managed care” in developmental disabilities reminds me a bit of the “World Wide Web” or “WWW.” A couple of years ago, almost no one knew anything about the WWW. Today, everyone is talking about the WWW, and just about every major organization in developmental disabilities, and many individuals, have a WWW “home page.” Similarly, “managed care” has become, almost overnight, a major issue dominating policy discussions in the field of developmental disabilities. Many states are moving toward the implementation of managed care approaches for developmental disability services. Reactions from leaders in the field to this development range from cautious optimism that this approach will result in a more effective and equitable service delivery system to extreme skepticism that managed care represents a mean-spirited cost cutting device to limit services to people with developmental disabilities and their families. 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.
– Steve Taylor, Center on Human Policy, June 1997
The preparation of this information package was supported in part by the National Resource Center on Community Integration, Center on Human Policy, School of Education, Syracuse University, through the U.S. Department of Education, Office of Special Education and Rehabilitative Services, National Institute on Disability and Rehabilitation Research (NIDRR), through Contract No. H133D50037. No endorsement by the U.S. Department of Education should be inferred.