Jackie Golden, Joseph P. Kennedy Foundation Fellow

Jackie Golden will serve as moderator. She is the parent of a child with Angelman's Syndrome for whom she arranges and directs state-supported services. She will set the stage for the morning's discussion.

Lorraine Sheehan, The Arc. The Arc is the country's largest voluntary organization committed to the welfare of all children and adults with mental retardation and their families.

Lorraine Sheehan is the chairperson of The Arc's Governmental Affairs Committee and a parent. She will describe the situation facing aging parents of Baby Boomers with disabilities and discuss The Arc's report on waiting list figures. She will also highlight the federal policies that are affected by this situation.

James Cumberpatch, Parent, Kensington, Maryland. Mr. Cumberpatch has a 35-year-old son with disabilities.

Mr. Cumberpatch will share his personal experience in caring for a Baby Boomer with a disability. He will describe how his family's needs have changed as his family grew older, and how these needs were or were not met by federal, state and local programs.

Dr. David Braddock, Department of Disability, University of Illinois at Chicago

Dr. Braddock is co-author of State of the States in Developmental Disabilities. He will discuss the big picture of services available for the disabled across the country. He will also discuss concerns regarding long waiting periods for services in specific states and how this affects the older parents of disabled adult children.

Tom Nerney, Co-Director, Self Determination for Persons with Developmental Disabilities

Mr. Nerney will provide an overview of the Robert Wood Johnson Foundation's self-determination project, highlight successful state programs and discuss their impact on the lives of the families who have been involved. In addition, he will discuss how he believes federal policy could be changed to help states better manage their resources to provide more effective care for persons with disabilities and their family members.

Commissioner Sue Swenson, Adm. on Developmental Disabilities, Adm. For Children and Families, U.S. Department of Health and Human Services ( A prepared statement was not provided. )

Commissioner Swenson will discuss the role of the Agency on Developmental Disabilities in supporting self-determination for the disabled and their families. She will also discuss ways the Developmental Disabilities Councils, Protection and Advocacy Agencies and University-affiliated programs are working to facilitate the education of parents and state legislators about the availability of services for the disabled across the country.

Diane Coughlin, Director of Developmental Disabilities Administration, Maryland