Council Chronicles

On October 1, 2003, the National Association of Councils on Developmental Disabilities (NACDD) was “born.” This new organization was the culmination of two years of intense planning and work. The vision of two merging organizations, the Consortium of Developmental Disabilities Councils (CDDC) and the National Association of Developmental Disabilities Councils (NADDC), has become a reality. Over the last six months, a new organization that represents all Developmental Disabilities Councils has taken shape: a new Board, Executive Director and Staff are on-board, a new website has been developed, and work on a newly awarded Technical Assistance contract is well underway. Councils on Developmental Disabilities now have a stronger, unified voice in Washington, DC. This voice will draw from its members’ experiences to advocate for a better quality of life for individuals with developmental disabilities and their families.

On May 1st, NACDD will have a new home in Alexandria, Virginia. This new location offers beautiful, updated office space at a more affordable price! We will share an elegant boardroom, a smaller conference room and kitchen with the American Seed Trade Association. The King Street Metro Yellow and Blue lines and Amtrak station are located directly across the street, and the National Airport is just two Metro stops away! Please note our new address and contact information:

225 Reinekers Lane, Suite 650

Alexandria, VA 22314

Telephone: 703-739-4400

Fax: 703-739-6030

Patricia ‘Pat’ Seybold, NACDD President, has held the position of Executive Director of the Kentucky Council on Developmental Disabilities since 1999. Pat holds a Bachelors degree in Parks and Recreation, a Masters in Therapeutic Recreation and a Masters in Conflict Management and Dispute Resolution. Her previous experience includes serving as Executive Director of a not-for-profit corporation providing residential and in-home supports. She has also worked as a teacher and as a supports coordinator. Pat has maintained active involvement in the merger/transition team, including serving as chair of the staffing sub-committee. She is a member of the NADDC public policy committee, and a former member of the Technical Assistance contract advisory committee. Pat also has extensive experience as a volunteer mediator and has provided training in conflict and anger management to teens in the juvenile justice system. Her other volunteer activities include past-president of a Kiwanis, chief negotiator for a local teacher’s union, chairperson of a township park and recreation commission, and legislative spokesperson for a statewide provider organization.

Jan Newsom, NACDD Vice President, has served as Chair of the Texas Council for Developmental Disabilities since September 1996, and previously chaired the Texas Council's Advocacy and Public Information Committee. She served as Vice President of CDDC for three years, and as convener of the Public Policy Team for two years prior to her election as Vice President. Jan is the parent of a young adult with a disability and is a practicing attorney in Dallas. She is a past president of the Dallas Autism Society and continues to serve on the Board of Directors. From 1990-2002, Jan served on the Parent Advisory Committee for Special Education of the Dallas Independent School District. She currently serves on the Advisory Board of Camp Summit, Inc., a full residential camp for people with disabilities, and has previously served as the President of the Board of Directors of Camp Summit. She is the past Chairman of the Dallas Bar Association Health Law Section, serves on the Health Law Council of the Dallas Bar Association, and has served as a member of the Cancer Council Board of the Dallas Metro Area American Cancer Society.

Pat Putnam, NACDD Treasurer, is the Executive Director of the New Mexico Developmental Disabilities Council and has extensive and varied experience working on disability issues on the local, state, national and international levels. Pat is the son, brother, and father of persons with disabilities. Currently, Pat is involved with the New Mexico Olmstead Committee, the Long Term Managed Care Committee, the Family Infant Toddler Committee, and several workgroups on topics such as Medicaid waivers and self-determination. Pat currently serves as the Vice Chair of the State IDEA Panel, and recently served as President of the New Mexico CEC and Chairperson of the Children's Committee of the Governor's Mental Health Planning Council. Pat was the founding chair of the national Special Projects Director's Conference for OSERS. He assisted in the development of the national curriculum for mental retardation and started the Special Olympics program in Colombia. He served as the consultant to South America for the Kennedy Foundation and assisted in the development of Special Olympics in Venezuela, Ecuador, and Chile.

Kathy Leonard, NACDD Secretary, is a retired school teacher and librarian, with a Masters' Degrees in Special Education, English as a Second Language, and Library Science. She has been involved in disability advocacy since 1977, when she attended the "White House Conference on Handicapped Individuals" in Washington, DC. Kathy is a trained mediator for the RI Governor's Commission on Disability, a program that mediates disability-related complaints involving state programs and/or individual businesses. She also participates in several advocacy organizations in Rhode Island and has presented at Rhode Island’s Youth Leadership Forum. Kathy has also attended national trainings on the ADA and has given presentations on the ADA to self-advocates and youth programs. Kathy also volunteers at the local library and is currently President of a local chapter of the AARP. When not involved in DD Council activities, she likes to read, travel, scuba dive and watch "Star Trek" reruns.

Karen Flippo, NACDD Executive Director, is responsible for the implementation of directives, policies and procedures adopted by the Board of Directors, provides executive management (operational and fiscal) of the organization, and works to develop and implement services to Member Councils, including public policy development, business development and public relations and marketing. Prior to this position, she was the Vice President of the Brain Injury Association of America, where she was responsible for managing the government and affiliate relations, information and resources, and education and training departments. Karen was the Chief Operations Officer and Director of Program Services at United Cerebral Palsy Associations, a founding Board Member of the Association for Persons in Supported Employment, and has held project director positions at the University of San Francisco Rehabilitation Administration Department and the Research and Training Center on Supported Employment at Virginia Commonwealth University. She began her career as a placement counselor for individuals with disabilities in San Francisco, California. While in California, she also worked as an aide to the California Subcommittee on People with Disabilities. She has 27 years of experience in rehabilitation and disability that spans direct service, grants management, organizational management, public policy, education and training, research, evaluation, and federal government service. Karen has a BA in Government from American University in Washington, DC and a Masters in Rehabilitation Administration from the University of San Francisco. Karen has been married to her husband, Chuck for 25 years, and they have a son, Ian, who is a sophomore in college.

Phyllis Guinivan, NACDD Council Services Liaison, assists the Association’s Planning Teams in the development of the organization’s Annual Conference and June Staff Conference Day. Phyllis coordinates the behind-the-scenes logistics that are required for these efforts. In addition, Phyllis collects information about Council achievements and NACDD initiatives and policies and distributes the information to external audiences such as federal agencies and the media via venues such as newsletters, press releases, and email alerts. Similarly, timely information of interest to member Councils is provided via electronic technology, such as email and the NACDD website, in conjunction with printed materials such as NACDD’s Annual Report and quarterly newsletters. Phyllis is also responsible for maintaining and developing new content for the website, www.nacdd.org.

Michelle Gray, NACDD Office Manager, provides administrative support functions primarily to the Executive Director and other staff as needed. Michelle’s duties include assuring the integrity of NACDD’s information technology system, invoicing and bill payment, assisting in the budgeting process, assisting with preparation of conferences and on-site logistics including maintaining registrations, compiling conference materials, assisting Member Councils in finding internal and external resources, negotiating with vendors for purchase/leasing and maintenance of equipment and services and maintaining comprehensive filing system and supplies.

Meet the Staff — Technical Assistance Contract

Susan Madison, Technical Assistance Contract Manager, and is the primary liaison with the ADD Project Officer. Susan provides identification, recruitment and coordination links to Council’s needing technical assistance based on the Council’s identified needs within their Technical Assistance Plan; conducts follow-up on technical assistance plans and evaluates effectiveness of technical assistance and training; prepares all progress reports required by ADD; conducts project evaluation; serves as staff liaison to the Technical Assistance Advisory Team; plans and coordinates Teleconference Forum calls; plans and coordinates regional and national Technical Assistance Institutes; maintains and expands electronic and other forms of communication between NACDD Councils and between and among Councils; archive materials collected and developed under the project for use by the Councils; and assists staff in acquiring, cataloguing and distributing resource information to Councils.

Sheryl Matney, Technical Assistance Contract Specialist, provides technical assistance to 27 State and Territorial Councils based on each Council’s needs as identified in its TA Plan. Sheryl conducts follow-up on TA provided and evaluates the effectiveness of the technical assistance and training received. Additionally, Sheryl assists staff in acquiring, cataloguing and distributing resource information to Councils. She also develops and maintains content for the Technical Assistance Project web-site, with guidance from members of the Advisory Committee, and develops the curriculum for the Executive Director and Council Chairperson tutorials.

Joining the Staff: Anne Rohall, Director of Government Relations

Anne Rohall is an attorney with extensive public policy experience. She is accomplished in conducting legal and policy research, as well as analyzing issues and writing articles for professional publications. She has drafted Congressional testimony and speeches and talking points for Congressional Members. Anne has worked with individuals with disabilities and other advocates in coordinating grassroots advocacy campaigns, and she currently sits on several CCD Task Forces. Prior to working with the Brain Injury Association, Anne worked in a legal practice assisting claimants to achieve wrongfully denied disability benefits from the Social Security Administration. With another firm, she represented hospitals nationwide against insurance companies that wrongfully denied medical claims. Anne is bilingual in Spanish, and she is the mother of a beautiful 1 year old, Ella.

Sam Choi, NACDD Intern

Note: At the request of self-advocates, advocates, volunteers and professionals, the Center on Human Policy has steered an effort to develop a toolkit that would enable advocates to find information and have access to talking points when promoting closure of institutions. When completed, the toolkit will be available for downloading on the website for RTC on Community Living at the University of Minnesota. Those who have developed the kit believe that many Councils have information that could be extremely valuable and could add to the product’s usefulness. If you have written materials on advocating for closing of institutions that you would like to have included, please send the documents to Karen Flippo (kflippo@nacdd.org) or to Phyllis Guinivan (pguinivan@nacdd.org) by May 5.

Note: The Administration on Developmental Disabilities will conduct MTARS on-site reviews in six States between May and September, 2004. The States are: Virginia, Alabama, Wisconsin, Arkansas, Utah and Colorado.

Future Newsletters

Our new organization is the focus of this first edition of Council Chronicles. We would like future editions to reflect the interests of you, our members. Please give us your input! We have discussed the possibility of including a self-advocates’ column and letters to the editor. Each issue might also focus on a specific topic of concern to our members, and Council projects that address these topics could be highlighted. Policy updates that impact these areas could also be included, as appropriate. Please send us your ideas, and let us know what features you believe would be helpful and interesting. If you have stories or poems that you think our readers might enjoy, please send them along, too. This project is truly a work in progress.

Send your ideas and suggestions for future editions of Council Chronicles to Phyllis Guinivan at pguinivan@nacdd.org.

June 6, 2004, NACDD’s Annual Meeting, Crystal Gateway Marriott, Arlington, VA.

June 7-8, 2004, Technical Assistance Institute, Councils -- Keeping It All in Balance, Crystal Gateway Marriott, Arlington, VA. .

June 9, 2004, Sharing Our Experiences, NACDD Staff Day, Crystal Gateway Marriott, Arlington, VA.

October 3-5, 2004, NACDD Annual Fall Conference, Hyatt Regency Hotel, Lexington, Kentucky.

September 21-24, 2005, Alliance for Full Participation Summit, Washington Hilton

Hotel and Conference Center.

NACDD’s Mission

NACDD’s mission is to provide support and assistance to member Councils in order to promote a consumer and family-centered system of supports for people with developmental disabilities.

Who We Are & What We Do

NACDD is a national organization for Developmental Disabilities (DD) Councils that advocates and works for change on behalf of people with developmental, as well as other, disabilities and their families. Members are nationwide State and Territorial DD Councils made up of people with developmental disabilities, family members and State policy makers. NACDD is a member-driven, nonpartisan organization that continues to evolve to represent the diverse interests of Developmental Disabilities Councils.

NACDD promotes national policy to enhance the quality of life for all people with developmental disabilities. NACDD will work with Congress and other organizations to strengthen Councils' systems change and advocacy role. NACDD is one of the few organizations advocating on behalf of people with the most severe disabilities in policy areas of primary importance to DD Councils.

National Association of Councils on Developmental Disabilities