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Massachusetts 2010 Lifespan Respite Summit
By Amy Nazaire

On March 25, 2010, the Massachusetts Department of Developmental Services (DDS) and the Massachusetts Executive Office of Elder Affairs (EOEA) hosted a daylong “Massachusetts 2010 Lifespan Respite Summit” at the Best Western Royal Plaza Hotel and Conference Center in Marlborough. A grant from the ARCH National Respite Network and Resource Center, with additional support from the Federal Administration on Aging and the National Family Caregiver Alliance funded the summit. The Massachusetts Developmental Disabilities Council, the Greater New England Chapter of the National Multiple Sclerosis Society, Associated Home Care Inc., and Greater Lynn Senior Services provided additional sponsorship for the event.

The purpose of the Summit was to bring stakeholders together from across the state to identify the needs of Massachusetts families for respite, identify barriers and solutions to statewide respite, develop a mission statement and goals for a Massachusetts Respite Coalition, and establish Massachusetts’ readiness to apply for federal Lifespan Respite Care funding in the coming fiscal year. Jill Kagan, the Project Director of the ARCH National Respite Network and Resource Center in Washington, D.C., gave the keynote presentation.

Ms. Kagan provided an overview of the federal Lifespan Respite Care Act of 2006, which established respite as a national priority. She also spoke about the states that have already established Lifespan Respite programs. Massachusetts is not one of these states, and Jill pointed out that at any given time during 2007, more than 1 million family caregivers in Massachusetts provided care to seniors and individuals with special needs. The estimated value of their care giving was more than $8 billion annually. Lifespan Respite, defined as “coordinated systems of accessible, community-based respite services for all family caregivers, regardless of age or special need,” would be a way to support these unpaid family caregivers. The 100 people who attended the Summit included families, government agencies, nonprofits, and other organizations that support seniors, adults with both intellectual and psychiatric disabilities, individuals with adult-onset disabilities, and children with complex medical and/or developmental needs, including autism spectrum disorders.

The Summit was also an opportunity to bring together some of the individuals who have been trailblazers in the area of Lifespan Respite, and to begin to build on the foundation they have established. Foremost among these is Carrie Howland, an energetic and eloquent mom who has worked hard to establish a Massachusetts Respite Coalition. The group also benefitted from the contributions and expertise of Dr. Emily Davidson, Director of the Down Syndrome Program at Children’s Hospital Boston. Dr. Davidson has been at the forefront of developing innovative respite options for children with developmental disabilities and their families.

Follow up activities for the Massachusetts Respite Coalition include: establishing a meeting schedule, researching the economic benefits of respite care, cataloguing existing respite resources and developing comprehensive information for families. These activities will help strengthen Massachusetts’ position to apply for federal funding to build upon these activities.

To learn more about the National Respite Coalition visit www.chtop.org/ARCH/ARCH-National-Respite-Coalition.html. For more information about the Massachusetts Respite Coalition, contact Amy Nazaire, Director of Family Support and Children’s Services for the Northeast Region of DDS at 978-774-5000 ext. 386 or via email at amy.nazaire@state.ma.us.