It is helpful for you to know more than just the name and contact information on the citizens who make up the Statewide Advisory Council. Periodically, we will profile a SAC member and share with you their interests and what motivates them to participate.
The mosaic that is Maria Damiano is an overlapping mixture of mother, wife, sibling, daughter, advocate, academician, health professional, CAB Chair, SAC member, and much more.
Born in Italy, she grew up in a close, cohesive home where at a young age; she was often the interpreter for her parents. She participated in discussions and planning regarding services for her brother John whose disability resulted from meningitis as an infant. In his youth, services were limited and few believed that he would even learn to read. John, now in his 50's, happily resides in a Malden residence and often spends a weekend at his parents' home.
Maria learned a lot from her parent's experience. At that time, the immigrant community that could provide emotional support had not yet evolved. Her parents had to go at it alone with virtually no community or organizational support like MFOFC or the Arc; without knowledge of available resources; and with little help from professionals. This family experience provided "training" for Maria to become an effective advocate and eventually co-guardian of her brother. The birth of her daughter, Julia, with severe disabilities presented an opportunity to advocate for her own family.
Being a sibling, Maria could better appreciate the experiences and emotions of her children. She was prepared to help them adapt and adjust to the complex, bittersweet dynamics of living with a disability. In many ways, she could anticipate their concerns and their need to be defined as their own individual. She was also prepared to learn what services and supports were available for Julia.
Maria initially joined the Metro North Citizen Advisory Board primarily to listen and learn; within a year, she was elected Chair. Utilizing the interests and talents of CAB members, the board's advocacy and activism grew to include Family Citizen Monitoring, effective legislative advocacy, engagement of self-advocates, and recruitment of diverse members. "Our Board has families representing different aspects of developmental needs; including cognitive, physical, and medically fragile individuals. We have professionals with expertise in housing and health care who provide guidance on various strategies to enhance the quality of life of individuals served by the Department," states Maria. Members are kept interested and engaged by having meetings with didactic and programmatic components. Part of the meeting addresses the budget and program and part includes a speaker on topics of interest to members.
Maria is Secretary of the DDS Statewide Advisory Council (SAC) and a member of the Self-Determination/Self-Advocacy, Turning 22, and Diversity committees. In addition to her contributions to the SAC as a family member, Maria brings the expertise of a health care professional widely acknowledged for her leadership skills. She is recipient of the Patricia Miller Leadership Award (Simmons MBA) and the Dennis Thompson Leadership Award (Brigham and Women's Hospital/Partners Health Care). This blending of roles and perspectives enables Maria to help advocates evolve into sage advisors to the Commissioner (via the SAC) and to the Area Director (via the CAB). In describing her roles, Maria says, "I am amazed and proud to be part of both the SAC and the CAB. It is through our community and working together that services and supports can be maintained to assure a high quality of life for our family members served by the Department."
Douglas Russell, Jr.
Douglas Russell, Jr. is a 21 st Century man. He cooks, his pottery is displayed in various craft fairs and he is a leader in the self-advocacy movement.
For many years, Douglas has been involved with Massachusetts Advocates Standing Strong (MASS), the statewide self-advocacy organization. He's been a member, a board member, and an officer. He has seen the organization and the movement grow from a few hundred members to a few thousand activists.
Voting rights are one of several issues Douglas champions. "It is important for everyone, particularly self-advocates, to know who is running, what their positions are, and how they will affect our lives," Douglas states. "Then you vote for the person who best represents you." In addition to voting, Douglas has run - and been elected - to office as MASS Treasurer. There he was responsible for doing the budget and keeping track of organizational spending. Since he enjoys organizational management and politics, Douglas is likely to run for office again with MASS or another organization.
Douglas values living on his own. This is where both his cooking skills and his house-cleaning skills become important. He notes that to prepare for living on his own, his parents encouraged him to learn those skills as well as how to get transportation. "It's important to have job," he says, "and you have to be able to get to work." For recreation, he goes out with friends, bowls and enjoys movies. He likes to travel.
Douglas is on the Department's Quality Enhancement Committee where mortality, morbidity and quality assurance reports are reviewed. The committee seeks ways to improve the health and quality of life of self-advocates. He is a member of the Seven Hills Foundation Board and was appointed by Governor Deval Patrick to the Statewide Advisory Council (SAC).
A proud son of Norwegian and Polish immigrants, Ron Asbjornson devotes a substantial part of his day advocating for individuals with disabilities. Nearly forty years ago, he and Bonni were advised to institutionalize their son, Paul. Without hesitation, they said, "NO! He's part of our family." With in home family partnership support, Paul now works at a local church.
Ron's advocacy career was launched when he and Bonni attended a Mass Families Organizing for Change Family Leadership Series. Bonni set the pace through volunteering with Life Links, leading a pilot Family Support Council, joining the Massachusetts Arc Board and becoming a member of the Family to Family Steering Committee. Ron's involvements include: Vice Chair of the Department's Statewide Advisory Council (SAC), Treasurer of Massachusetts Family Organizing for Change, member of the Department's Strategic Plan - Facility Planning Committee, and member of the Northeast Region Citizen Advisory Board (CAB). As a SAC member, Ron is a key contributor to the SAC's "active advocacy". He encourages families, self-advocates, and other citizens to "get involved. Become active in your son's or daughter's school, provider agency or in CAB activities. The investment of time will pay off with information about programs and services, new skills, and better quality of life for all of our families".
Hank & Ann Paszko
In May, the Paszkos celebrated their 43rd wedding anniversary. For many of those years, they have been involved in activities to promote and safeguard the rights, health, and safety of individuals with mental retardation.
Their inspiration is Paul, their 35 year old son. He has been living in Northboro MA for the past twelve years, but visits his parents in Lancaster very often!!
The Paszko's daughter, Jane, is a professional videographer whose view on life would be a lot different if Paul was not in it and states that she is very grateful for his presence.
Hank is a member of the Statewide Advisory Council and Ann is a former member. Their CAB and other involvements cover almost every possibility of citizen participation. One or the other Paszko (and sometimes both) is a member of the Central/West Regional CAB, the North Central Area Board (and former president), North Central Family Citizen Monitors, Complaint Resolution Team, the Department's Statewide Quality Council, the Employment Committee, and member of the SAC Autism workgroup.
When Reggie Clark describes his railroad excursions to Arizona, Maine or DC or when he gives bus and subway directions to any location in Boston, many are amazed at the extent of his knowledge about interstate touring on the rails or getting around in the city. Reggie is an aficionado of trains and mass transit.
Having spent much of his youth and young adult life in Fernald Developmental Center, Reggie now lives with his housemate, Gordon, in Brookline. Though they do lots of activities together since they became housemates in 1983, each has his separate interests. Gordon is a Special Olympics swimmer; Reggie leads an active life of advocacy, community involvement, and dispenser of friendly advice.
In addition to being a member of the SAC, Reggie is on the Family DARE Services Human Rights Committee, the Greater Boston Citizen Advisory Board, the Metro Region Quality Assurance Council, and has memberships in Massachusetts Advocates Standing Strong and the Mystic Valley Railway Society. He was recently recognized for his role in improving mass transit services for people with disabilities with an award from Boston Legal Services.
Reggie is very clear regarding his philosophy and approach to life. As a differently able person, he asserts that "If ya'll can do it, we can do it." He does not allow his vision challenge to limit his access and opportunities. Many have observed that Reggie has the independence and the courage to get to any location in the city or in the state! AND once there, he will gladly share his perspective on the issues being considered.
Reggie is acknowledged by colleagues at the MAB workshop as someone that they can confide in and get helpful advice. He has a positive outlook and shares his enthusiasm. When it is necessary to advocate, he is courteous and steadfast.
When asked what advice he gives, Reggie said it is "to get involved on community boards, be part of something, and work to change a few things."
Christine Lewis Shane, Ph.D
In the last few years, Christine Shane learned to respond to both "Doctor" and "Mimi". She earned her Ph.D from the Heller School of Social Policy and Management at Brandeis University and became a Grandmother! Both experiences will serve her well as Chairperson of the Statewide Advisory Council (SAC).
For more than thirty years, Christine has been involved in the lives of individuals with disabilities. As a teen-ager she volunteered at the Roxbury Multi-Service Center. Professionally, her work experiences evolved from elementary and special education teaching to organizational and behavioral management consultation. Christine is currently an Assistant Professor at Fitchburg State College, Department of Behavioral Sciences, and continues to provide program design and evaluation consultation to schools and non-profit agencies Her mentors and colleagues are a "Who's Who" of the field: Gunnar Dybwad, Burton Blatt, and Wolf Wolfensberger, to name a few. Her goal as the Chairperson of the SAC is to help the Department become more transparent to constituents and policy-makers. "I'm excited about Commissioner Howe's approach of doing business differently, promoting flexible funding and giving individuals and families more choice. I enjoy working with the diverse members of the SAC who contribute their unique perspectives to the numerous issues we review." Christine lives in Brookline with her husband, Peter McNulty.
Maria is a full time Mom of five children and a full time advocate.
Advocacy is a generational dynamic in the Freccero family. It all starts with her Mom and Dad modeling how care and compassion is expressed through their support of Maria's two siblings with intellectual disabilities. Maria learned first hand the importance of advocacy as she visited and shared responsibility for her sister, Michelle, who resided at Hogan Developmental Center. She assisted Hogan staff in developing a more family-like environment that respected the human rights of each individual. In acknowledgement of the impact of her work at Hogan, Maria received the Department's Human Rights Award.
Advocacy extends through Maria's leadership as Chair of the Merrimack Valley Citizen Advisory Board (CAB), membership on the Northeast Regional CAB, and Vice-Chair of the DMR Statewide Advisory Council (SAC). Through these "formal" involvements, Maria is committed to enhancing the services and support offered by the Department and being one voice for individuals who cannot speak for themselves.
Two of Maria's five children are served by the Department. Her son David is a current embodiment of advocacy. Learning from his family, he is a self-advocate whose dream was to perform "live on stage" and he arranged to do so! In response, a foundation was established, Follow Your Dream Foundation, to help individuals with intellectual disabilities get closer to achieving their dreams. David's is a 2008 Dybwad Honoree in recognition of his contribution to improving the quality of life for individuals with intellectual disabilities.
The other Freccero children have learned to focus on ability, not disability and not just with their siblings, but with everyone. This too, was passed onto them from their incredible grandparents.
Maria is best described as a regular person who helps to make great changes. One of her favorite quotes is: " Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has." [Margaret Mead]
Lisa Ching was thrown into a "new" world of disability when one of her two children was first diagnosed with a lifelong, developmental disability at an early age. Despite inaccurate reassurances from a well-respected and well-educated physician, giving Lisa reasons to believe her child was absolutely fine and would grow out of the delays with time and who even gave her reasons why her child might be delayed - justifying each and every delay, Lisa remained worried about missed milestones and about what a vast difference there was between her two children.
After informal networking and speaking to someone who listened to her describe her child, Lisa realized there was more to look into despite her trusted physicians' statements. Unfortunately, her quest to find out what was going on with her child was delayed because her father was ill and she had to help tend to matters at home.
Lisa's dad, who was a positive role model in Lisa's life and who taught Lisa and her siblings to embrace their Chinese-American heritage and to be a "fighter" and to never give up, truly inspired Lisa to be strong and to not waiver when difficult decisions needed to be made.
Although her dad never knew her child had a disability because he passed away before her child was diagnosed, Lisa will always remember his special spirit and his inspiration that continues to drive Lisa today. If Lisa could be half as worthy as her dad was, half as special as he was, she would be pleased. He was a wonderful father, who helped so many people in his lifetime.
In that same way, Lisa hopes she can be of help to the various organizations she participates in, and she hopes she can shine a light for those individuals who cannot speak for themselves, for those who need special attention and who are the most vulnerable of citizens in society. She wants all people with differences to be treated fairly and to have opportunities that everybody else has. She believes in the principal of self-determination and the rights of all people to live as full of a life as they desire.
This information is provided by the Department of Developmental Services.
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