Since 1990, MFOFC has been uniting families of individuals with disabilities to build a better future of supporting families. Read on to learn more about some of our accomplishments.
MFOFC: A 21Year Retrospective
by Emily Murgo Nisenbaum, Co-Founder of MFOFC
Massachusetts Families Organizing for Change is 21 years old and does have an important history in relation to family support in Massachusetts. As we reflect on the past 21 years, what we’ve done, and how slow and small the changes can seem, the film It’s a Wonderful Life comes to mind. Remember the part where George attempts to end his life and is visited by the angel who reminds him of the impact he’s had on those around him and his community – and of how different things would be if he hadn’t been there?
What would have happened if MFOFC and all the hard work of its members had never been? Would we have less $ or no $ for family support? Would we even have family support or just respite – available to so few and in its “one size fits all” model? Would we have had the opportunity for leadership training and the opportunity to demonstrate leadership? Would we have been able to develop a voice to articulate what makes us feel supported? And the scariest and most heartbreaking thought of all – would we have had the opportunity to know each other and join together through this network whose goal is to improve the lives of individuals with disabilities and families here in Massachusetts?
Let’s take a brief look at the history of MFOFC ~ have we made a difference? What have we done over the past 21 years?
The first Family Leadership Series began in Southeast Massachusetts.
It was inspired when we learned that in New Hampshire, a small group of families had participated in something called the FLS. And especially inspirational was the fact that this small group of 30 family members was able to pass 2 important pieces of legislation in NH. One was to deal with the waiting list for services that existed at that time and the other created a system of family support in NH.
So why couldn’t families have that kind of impact in Massachusetts? At the completion of the first FLS, a similar group of ordinary family members drafted the first Family Support legislation ~ recognizing that families were not being supported at that time, this group set out to change that!
MFOFC was born in a small office in Boston with the technical assistance of the Human Services Research Institute. There were 3 or 4 family members present on that day but MFOFC was on its way and growing to include families from all over Massachusetts.
The Southeastern Massachusetts Family Leadership Series group introduced Family Support legislation at a breakfast for legislators from every district in Southeastern Massachusetts.
The Western Massachusetts group of MFOFC hosted a legislative breakfast to introduce the Family Support bill to legislators from that part of the state.
And, from that time to now, families became legislative advocates with a VISION – to create a responsive, flexible and accessible system of family support in our communities in Massachusetts.
When it became apparent that we were continuing to meet resistance for the passage of our Individual and Family Support bill, we worked with EOHHS to establish 3 PILOT PROJECTS in Massachusetts. The purpose of these pilots was to demonstrate to the legislature and others that family support was a meaningful and desired practice – that families want and need to be supported and that it is possible to do that.
Each of the 3 pilots was in a different part of the state.
- Southeast – Transition Pilot working with young people transitioning from school to adult life in their communities
- Northeast – Broker Pilot working with families on ways to coordinate and find resources for their children and families
- Central – Project for families whose children have complex medical needs
Even though MFOFC was frustrated that our legislation hadn’t passed, families were served within these pilots and since, these models of serving families, and the inherent principles, have been replicated and practiced around the state.
After 11 long years of filing the Individual and Family Support legislation 8 different times, it finally passed into law, signed by then Governor Jane Swift.
Since 2002, we have worked toward the full implementation of the Individual and Family Supports law, Chapter 171. Due to our efforts, each of the 7 state disability agencies write Annual Plans regarding their family support services. Families across all the agencies are finally developing a voice and being consulted as policy is set.
2012 Gunnar Dybwad Leadership Award given posthumously to Louis Nisenbaum, a co-founder of MFOFC.
(View Award Event Video)
Louis “Lou” Nisenbaum of Lakeville received the 2012 Gunnar Dybwad Leadership Award posthumously. The award is presented annually to an individual who has made a significant impact on enhancing the lives of individuals with disabilities in the Commonwealth. For more than 40 years, Mr. Nisenbaum worked to enhance the lives of individuals with intellectual disabilities and early on in his career saw the need to empower people with disabilities rather than simply provide them with care. He established a new community residence in Attleboro, one of the very first operated by a private non-profit organization. Mr. Nisenbaum later was instrumental in the independent living movement guiding people to establish their own accessible apartments and exercise self determination in designing their own supports. He founded The Nemasket Group, a human service agency focused on community integration and was a co-founder of Mass Families Organizing for Change, an organization supporting families throughout the Commonwealth.
2015 Parent/Professional Advocacy League (PPAL) Excellence in Family Leadership Award given to Ann Berube, MFOFC Board Member
Ann Berube is a Family Resource Specialist for the Gardner Family Center with YOU Inc. and MFOFC Board of Director representing the Central Region. At their May 29th conference, PPAL recognized Ann’s dedication and strong advocacy on behalf of families of children and youth with mental health needs presenting her with the “Excellence in Family Leadership Award”. Ann is active in legislative advocacy and is well known to pick up the phone to contact legislators and discuss the need to strengthen or change policy to greater support families. Her dedication, voice and advocacy has helped families across the state. One parent told PPAL, “Ann gives me hope and was the first person that I trusted to tell that I had a child that had significant needs”.
- MFOFC has continued to sponsor the FLS throughout the state over the past 22 years so that close to 2500 family members in Massachusetts have attended a Family Leadership Series.
- Over the past 21 years, MFOFC has sponsored several Advanced Leadership Series and our regions hold conferences and workshops on housing and supports, transition and other topics. As often as possible, we publish a newsletter highlighting various topics so we can continue to share information with our members and others. MFOFC also has an active and up-to-date web site – another attempt to find ways to stay connected and share information.
- 21 years later, MFOFC has grown from the 4 parents meeting in Boston in 1991 to form the organization to a statewide, grassroots, advocacy organization that is NOW 3000 members deep! AND we’ve created an organization that is kind of like the United Nations of Family Support. It is cross-cultural, cross-disability and cross-age – finally we are not divided in our ability to advocate by the labels attached to our children or geography or ethnicity.
- Over 21 years, MFOFC has taken a stand on many issues affecting our families and family members. MFOFC adopted position statements prohibiting our board members from attending meetings at the state facilities and for the closure of institutions because we believe that all people should be able to live, work and play in our communities. We also have adopted a position statement against the use of Aversive Therapy.
- MFOFC is involved in collaborative activities with other advocacy organizations including Mass Arc and Mass Advocates Standing Strong. We work consistently on developing a common agenda that will strengthen our voices. One of these collaborative activities was the development of the Tools for Tomorrow instructional curriculum for individuals and families interested in innovative and personalized housing and supports. Another collaborative effort has been the publication of “Implementing a 21st Century Disability Policy.” With the Arc and other groups MFOFC is currently engaged in follow up activities in the various regions using “MA 21” to inform and educate as many people as possible about a vision of full community participation for individuals with disabilities. We advocated during the last legislative session for the passage of the HB 4167, “An Act to encourage responsibility, cost effectiveness, and meaningful lives for people with disabilities.” The Real Lives bill expands the ability of people to direct their own public funds. It requires no new funding. It requires that the administration implement certain new goals and strategies so as to allow public funds to be used as flexibly as possible by the individual or family even if it requires a new federal waiver or state plan amendment. The legislation did not pass, but we will continue our efforts with our partners.
- MFOFC has collaborative relationships also with the Massachusetts Developmental Disabilities Council, the Department of Developmental Services and other state agencies..
- WE ARE STILL HERE. 21 YEARS LATER! This — in and of itself — is a phenomenal achievement. MFOFC has outlived the average life span for groups like ours and has stayed true to its values.
As we stand at the bridge and look out, we can clearly see the difference we’ve made. There are families now who do not know that flexible family support didn’t always exist – or that “family directed” was not a known or practiced concept a few short years ago.
As Ghandi said, “We must be the change we wish to see in the world!” When we next look out from the bridge, MFOFC wants to be sure that we’ve continued to make a difference.