Focus on Advocacy: Get Involved with Respite Care!

by MaryJo Caruso, Alliance for Community Respite Care of UCP/CLASS

When family caregivers of individuals with special needs are asked what kind of help they need, the most frequent response is “I need a break!” That break, or respite, is an important family preservation and family support service for caregivers of family members with special needs. The Alliance for Community Respite Care (ACRC) of UCP/CLASS is a regional effort comprised of a volunteer Advisory Board who meets monthly with a focus on enhancing the quality and availability of respite care services.

For family caregivers and individuals with disabilities across the lifespan, respite care provides a needed break for all participants from the ongoing responsibilities associated with providing home care. Respite reduces caregiver burn out while giving the individual with special needs the chance to benefit from interacting with others. The ACRC of UCP/CLASS is dedicated to working locally and with statewide partners to identify and reduce barriers to accessing respite care. The mission of the ACRC of UCP/CLASS is to ensure that the needs for relief and support of caregivers for people of all ages with special needs are understood and effectively met with appropriate resources.

On September 27, 2010, the ACRC of UCP/CLASS hosted a community Town Meeting to celebrate Respite Awareness Week in Pennsylvania and provide a local, statewide and Federal respite update. The meeting was complemented by a respite resource fair highlighting local providers, input from legislators and the local ADRC, and the presentation of a proclamation from Congressman Jason Altmire recognizing the advocacy efforts of the ACRC. The evening also focused on action steps that local stakeholders could take to actively participate in Pennsylvania’s federally funded respite initiative. In 2009, Federal funds were authorized for competitive state grants to develop Lifespan Respite Program based on the Lifespan Respite Care Act of 2006. The federal funds were designed to assist states to help families access quality, affordable respite care via “coordinated systems of accessible, community-based respite care services for family caregivers of children and adults with special needs." Pennsylvania was awarded a federal grant in 2010 to develop a comprehensive lifespan respite program and strengthen the respite infrastructure throughout the state. The ACRC of UCP/CLASS has worked closely with state partners to access and implement the federal respite funding. The ACRC of UCP/CLASS encouraged town meeting participants to get actively involved in the federally funded state effort by working with stakeholders to:

• Meet, plan and take action steps for a coordinated statewide respite program with state policymakers and officials
• Strengthen the ACRC Advisory Board by insuring that respite needs of individuals cross-age and cross-disability are represented and expressed
• Assist caregivers to access respite through awareness and information sharing of the ACRC of UCP / CLASS’
  • Online data base of local providers
  • Telephone resource and referral support
  • Respite vouchers when available from fundraising efforts
• Provide input from the region to assure a statewide approach that is both flexible and responsive to the needs of families and individuals with disabilities
• Educate the community about the need for and benefit of respite care in order to effect change among legislators, policy makers and community members
• Serve as a liaison between cross age and cross disability groups, the ACRC and the federally funded statewide effort.

The ACRC of UCP/CLASS welcomes your input. If you are interested in knowing more about the volunteer advisory board, please feel free to contact 412-683-7100 ext. 4230 and be sure to visit the UCP/CLASS website at www.ucpclass.org. At the home page, type “respite” in the Search box in the upper right corner to discover an array of resources.

If you would like to receive updates or address the respite interests of an individual or group of any age or disability, consider joining Pennsylvania’s Lifespan Respite group on Yahoo. A Yahoo! Group was created in order to coordinate communication among respite stakeholders across Pennsylvania. To access the online group and request membership, go to: http://health.groups.yahoo.com/group/pennsylvania_respite/. Once on this web page, click on “Join This Group” and follow the instructions provided. By joining the Pennsylvania Respite Coalition’s Yahoo! Group, interested parties will be sure that they are up to date on all respite happenings and developments locally and throughout Pennsylvania.

Accessible and affordable respite care will be bigger and stronger in western Pennsylvania because of each of us. YOU can play a vital role in providing evidence that advocating for caregivers to ask for help, or as in this case respite, is a sign of strength for family members, individuals with special needs and, ultimately, our communities.