TO: DDS Community
FROM: Elin M. Howe, Commissioner
DATE: April 14, 2010
RE: Update 170

Governor's Commission on Intellectual Disability

On March 31, 2010, Governor Deval Patrick signed the Executive Order that changed the name of the Governor's Commission on Mental Retardation to the Governor's Commission on Intellectual Disability. This change followed the recent name change of the agency to the Department of Developmental Services and the changes to regulations which made the term "intellectual disability" synonymous with mental retardation and eliminated all references to "mental retardation." Members serving on the Commission are Allen Crocker, Anne Fracht, Craig Smith, Cynthia Levine, Evelyne Milorin, Ruth Freedman, Jim Brett who is the Chair, John Nadworny, Jim Ross, Robert Baldor, Marjorie Cohen, Florence Finkel, and Janice Ware.

DDS and SAC State House Celebration Held on March 22nd

DDS and the Statewide Advisory Council held its annual State House Celebration on March 22, 2010 in the Great Hall. More than two hundred and fifty individuals, family members, providers, legislators, DDS staff, and other citizens attended. The 2010 theme was "Take Charge: Take Action!" Dan Rea, a veteran Boston television journalist who is the Host of NightSide on WBZ news radio and well versed on disability issues, was the emcee for the event. This year, Marjorie Cohen and Susan Nadworny were presented with the 2010 Gunnar Dybwad Leadership Award.

Marjorie Cohen was recognized for her work as a political activist, change agent, counselor to families and tireless champion of individuals with intellectual disabilities. She successfully advocated for her daughter and other special needs students' full inclusion in the Worcester school system. She got the United Way to collaborate with the Carpenters Union to build wheelchair ramps and adaptive equipment for individuals with mobility impairments. As the Worcester Citizen Advisory Board chair, Marjorie mobilized individuals and families to advocate for state funding and on disability policy issues through letter writing campaigns, visits with legislators and training of individuals and families in how to speak directly to legislators to get results. Marjorie has helped organize self-advocacy groups and initiated the family citizen monitoring program for community residences in Central Massachusetts. Marjorie currently serves on the Governor's Commission on Intellectual Disability.

Susan Nadworny was recognized for her unyielding commitment to help others and her unique ability to rally people together to help all families in Massachusetts ensure that their children with disabilities have the same opportunities as other children. As President of Massachusetts Families Organizing for Change, Susan helped MFOC become a leading voice in the developmental disability community. In addition to helping out families directly and educating them on how effective services can help individuals with disabilities realize their potential, Susan was a frequent visitor to Beacon Hill where she met with legislators and shared with them the knowledge and stories that were critical to their understanding of the importance of assisting individuals with intellectual disabilities. Susan's efforts to support the disability community have also expanded to working with the Donate Life Melrose program in organizing organ donation awareness activities and raising money to fund education and outreach.

At this year's event, there were fifteen individuals and groups of individuals recognized as the 2010 DDS/SAC State House Honorees. From Metro Region, the honorees were Denise Daley Truong for her sponsorship of the Kim Rojas "Jumpin' and Jammin' Room at the South Shore Mental Health Center in Squantum, Mary Rogers/Lisa MacPhail for the positive steps Mary has taken towards independence with the help of Lisa, and Mark Whitehouse for Mark's Adaptive Driving Program in Dedham which provides evaluation, driver training and advocacy for thousands who now have the driving skills to secure employment and increase social opportunities. From Southeast Region, the honorees were Heather Sherwood for the positive life changes she made including becoming an advocate for animal rights, and Malissa Kenney for her work with Borders Bookstore that led to its donation of books, games and educational materials to the Arc of Greater Plymouth and her efforts in creating a choral group and drumming classes with the South Shore Conservatory for individuals with disabilities. From Northeast Region, the honorees were Laurie Brennan/Cathe Carpenter for their leadership on the Central Middlesex Citizens Advisory Board in revitalizing its legislative committee and creating the community relations committee; Cynthia Perrone for her efforts in getting funding restored to the Family Support Program; and The Lowell Wish Project for its work in supporting the Lowell and Merrimack communities, including arranging with Merrimack Educational Collaborative participants to make baby blankets out of donated fleece materials for distribution to local families. From Central West Region, the honorees were Luz Eneida Garcia for taking charge by earning a degree in Early Childhood Education, joining the Family Board for Family Empowerment and becoming co-director of Casa Latina to ensure that her son and other children with medical, physical and intellectual challenges would enjoy an independent and quality life within the family structure, Deborah Pierce for her advocacy as a member of the Worcester Self-Advocacy group and Worcester Area Citizen Advisory in championing the agency name change, and for better and safer transportation access for elders and persons with disabilities, and Deborah Davignon for her work in establishing "Bridging Care for Families" which is devoted to meeting the needs of families of children with complex medical needs, including the provision of home evaluation, skilled nursing visits, occupational and physical therapy services, medication management, blood draws, and/or intravenous therapy for treatment of dehydration to avoid a hospitalization or emergency room visit. From the Developmental Centers, the honoree was Nancy Angney for her work on the Monson Developmental Center Board of Trustees and applying her expertise and experience as an architect in helping the facility to improve space utilization on the campus and to maximize the functional use of living and leisure space in the design of new community homes. From Central Office, the honorees were Maria Freccero for her work in organizing and energizing citizen advisory boards to cultivate relations with the administration and the legislature, and to engage them in discussions on their decisions' impact on individuals and families served by the Department, the DDS Complaint Resolution Team: Tom Larkin & Deb Aulenback and the 125 CRT citizen volunteers they represent for their time, expertise and skills in assuring the safety and security of individuals with disabilities by reviewing allegations of abuse and neglect referred by the Disabled Persons Protection Commission, identifying the factors that led to the situations, and developing Action Plans to prevent a recurrence of such incidents, and The Task Force on Young Adults In Need of Intensive Community Based Supports and the Co-Chairs, Rick O'Meara and Janet Ricco, an 18 month collaboration of families, providers and state agencies that produced a report with recommendations for improving the service delivery system that supports a population with intensive medical needs

For more information and pictures from the event, go to the DDS website where you will find the story about the State House Recognition Event under "What's New" shortly.

John Anton is 2010 Advocate of the Year

John Anton, an outstanding leader in the disability field was named the 2010 National Down Syndrome Congress Advocate of the Year. John was recognized for his leadership of Massachusetts Advocates Standing Strong, his effective legislative advocacy, and his embodiment of independence and self-direction. Congratulations John!

News from the Northeast Region

Urban Youth Collaborative Program Update - Two former participants were recently awarded very prestigious fellowships. Alison Nazzaro was awarded the Carol A. Ghiloni, RN, Oncology Nursing Fellowship where she will work 10 weeks in the Oncology Nursing Service at Massachusetts General Hospital. Through UYCP, Alison worked as a direct support staff at the Hogan Regional Center on the unit with very medically involved individuals. Because of this introduction to the field, Alison enrolled in the Nursing Program at the University of Massachusetts/Amherst and always returned to work at Hogan during school breaks. During her application process for this highly competitive fellowship, Alison passionately articulated how her experience at Hogan was the motivating factor in her career path. Samantha Kalish was awarded a Fulbright Fellowship to spend next year teaching English at a University as well as working with disabled individuals in Argentina. Next month, Samantha will be graduating from Washington University in St. Louis with a degree in Spanish and Latin American Studies. Samantha had spent two summers with the UYCP working at residences in the North Shore operated by Turning Point. She has attributed her introduction to supporting individuals with disabilities as well as working with the diverse cultures of her colleagues as major factors in securing this fellowship. Congratulations to both Alison and Samantha.

News from Central/West Region

Holyoke Chicopee CAB's March 23 rd Celebration - The Holyoke Chicopee Area Citizens Advisory Board hosted its 8 th Annual Community Celebration of Intellectual and Developmental Disabilities Month on March 23. The celebration honored 17 individuals who, through their volunteer work, have improved the quality of life in their communities. Honorees included Tom Banks, Robin Carney, Irene Dumas, William Hurley, and Hebert Wineberg from Belchertown; Eliezer Diaz, Joy Gosselin, Ronald Gough, and Robert Pete from Chicopee; Adam Gagne of Three Rivers; David Gonzalez, Efrain Gonzales, and Alan Junkins of Holyoke; Lee Grossack and Anthony Zupkowski of Ware, Adam Harrison of Granby, and Barbra Hatch of So. Hadley.

Central Region CAB's Annual Legislative Breakfast - The Central Region Citizen Advisory Board held its Annual Legislative Breakfast on March 5th. Self-Determination Awards were presented to Mary Kate Amantea of Worcester, Alan Silvar of Fitchburg, and Karen Reynolds of Shrewsbury. The trio was recognized for embracing the principles of self-determination and self-direction, either through personal action, or supporting those individuals with intellectual disabilities to take control over their own lives as responsible citizens of their communities.

This information is provided by the Department of Developmental Services.