Families: The Heroes of Our Movement, the Lifeline for the People We Support

A message from the desk of Dan Burke

This past spring, The Arc of South Norfolk saw the passing of an era with the news that our founder and the person who inspired the formation of our agency, Ruth Holman, had died.  It was Ruth who hosted that first meeting of The Arc of South Norfolk at her home in 1954.  From this meeting, a board was formed, an agency was incorporated and, most important, a group of people who shared the common bond of making a better life for their family member with a disability created a community of support.

These heroes have been the founders, leaders and lifeline for our agency and their family members.  Parents, grandparents and siblings are caregivers, guardians, protectors, advocates – but most of all loving family members.  In 2014, when we celebrated our 60th anniversary, our first president, Bill Abel, made a statement that has resonated with many of our staff members: “The True Heroes of our Agency are the Families.”  The Arc strengthens people with disabilities, their parents, family members, and dedicated professionals by connecting them across a local, state and national network of community-based chapters.  The Arc is the nation’s leading advocate for all people with intellectual and developmental disabilities (I/DD) and their families; the Arc of South Norfolk, along with its affiliated agency Lifeworks, are among the premier providers of the supports and services that so many people need and want.

Families inspired The Arc to file the Ricci lawsuit that led to the closure of large institutions for people with I/DD and the creation of a system of community-based services.  Our agency began providing services with an employment program in downtown Norwood in 1973 and opened our first community residence in 1975.  Over the next 44 years, through The Arc and Lifeworks, we have developed a system of supports and services that includes 18 residences, several state-of-the art employment and day programs, individualized residential supports, the Family Support Center, Family Autism Support Center, and Harbor Counseling Center, as well as many other services for over 2,400 people, with over 500 staff between our two agencies.

Families with a need and a common interest founded our Family Autism Center.  Families also inspired our statewide Arc organization to file the Boulet lawsuit to move more than 2,400 people off a waiting list for residential supports.  Lifeworks and The Arc of South Norfolk are especially proud of this because families served at that time by Lifeworks and The Arc, including the Boulet family, were essential in the success of this initiative.  Each of these situations represents what is most inspiring about the important role of families, which began by addressing the needs of specific family members with I/DD, but rapidly expanded to advocacy on behalf of many others.

 Today, we have a wonderful system of talented professionals providing support and care for people with disabilities, yet we still pride ourselves on continuing to provide personalized, individualized support for families.  The Arc offers parent support groups, transition age support groups, a sibling support group, family advisory councils and a wonderful grandparents group.  We offer many evening and weekend social and recreational groups for people of all ages.  The Arc and Lifeworks have always aimed to provide places where people of all ages can receive support that often start with an open door, a friendly smile, and a listening ear.

As we look ahead, families will continue to be instrumental in leading us to address the issues of the future.  Over the next few months, both Lifeworks and The Arc of South Norfolk will undertake a strategic planning process to set the direction of our agencies over the next three to five years.  This process will actively involve all stakeholders including the persons we serve, the staff and our families.  This process will help to outline how our agencies will best position us to meet impending needs.  The challenges are daunting: the workforce crisis, the rising needs and numbers of people on the autism spectrum, the long-term care of people with significant medical issues along with I/DD, and finding employment and residential supports for those in need.

But our history inspires us.  Our challenges of today are no more formidable than those faced by our predecessors over the past 65 years.  We will use their legacy to motivate, guide, and inspire us as we seek to develop answers to these challenges.  Critical to our success is families’ support of our mission in the community – through legislative advocacy, assistance in procuring additional resources, and informing others about the important work we are doing. 

I foresee The Arc and Lifeworks continuing to serve multiple future generations of those with I/DD.  Our ability to build on the effectiveness of our first 65 years will depend on the continuing strong partnership between the persons we serve, their families, and our agencies.

I look forward to working with all of you to achieve these dreams.