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Results of ARCH 2001 Survey of State Respite Coalitions |
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Results of ARCH 2001 Survey of State Respite Coalitions |
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Contents
Introduction This factsheet is available as a printed document in Adobe PDF format. Click here.
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Introduction From an historical perspective, planned and crisis respite are relatively new services for families caring for a dependent family member. Although respite programs were developed in the 1960s, most States still report a serious shortage of respite for families in need. This nationwide shortage of respite programs, coupled with the realization that there is strength in numbers, planted the seed that has lead to the growth of State respite coalitions. Although two States formed respite coalitions in the late 1980s, it was not until the mid-1990s that other States began to organize. Since that time more than two dozen Statewide respite and crisis care groups have emerged, creating opportunities for communication, coordination, and collaboration. Coalition members provide a support system for each other and assist in making the most of opportunities and solving problems that may be too challenging for any one person or agency to manage. These groups developed by different means, through different organizations, and with different individuals as leaders. They have taken on many different names and a variety of forms, but they all have a common goal: to promote and improve respite and crisis care services within their State. |
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In an effort to determine commonalities among respite coalitions and to update contact information for each of them, ARCH studied 31 known State respite coalitions. The telephone survey was conducted by ARCH staff in late 2001. Information was obtained about how and why the coalition was begun; the membership, structure, and leadership; funding, evaluation, and manner and frequency of communication; and successes and challenges. Status of the Coalitions in November 2001 ARCH identified 31 State coalitions, which formed the pool for the survey. Of those, 25 were found to be formalized and working as functioning units toward realizing their mission and goals. Three had completely disbanded, and another three reported they had temporarily disbanded but were interested in jump-starting efforts in their States. Among the 25 functioning coalitions, three reported that they were interested in expanding their existing memberships to include more participants and reaching untapped areas of their States. Start-up Process All coalitions reported needing committed individuals and their respective resources to start their coalitions. Consumers of respite services, often families of children with special needs, started some State coalitions, while other coalition-building efforts began with respite providers, State agencies, or both. While some coalitions began the building process after securing funding for that purpose, others relied on the financial generosity of their members to underwrite development costs. Twenty State coalitions had some form of outside financial support to start their organization. Six coalitions received start-up funding from their State Developmental Disability Council, while ten received start-up funds from State agencies. Five coalitions received funding from more than one resource. The survey did not ask for the amount of start-up funds received, but respondents volunteered that funding levels were low and were designated specifically for start-up, not for ongoing operations. All but two coalitions reported using in-kind resources of coalition members for meeting space, mailings, and coordination. The ARCH National Respite Network and Resource Center provided on-site technical assistance to eight States in developing their respite coalitions. Coalition Products All of the State coalitions reported formalizing their existence, to some degree, through documentation. Most reported that they started by developing a mission statement and then followed that with other instruments, such as by-laws, planning documents, and brochures. Twenty-two coalitions reported having mission statements, and 14 of those have by-laws. Eighteen coalitions said they had developed or were in the process of developing a brochure about their organization. Twelve coalitions reported having undergone a strategic planning process that resulted in a plan for the coalition. Only eight had become incorporated as nonprofits at the time of the survey. (Many of the documents produced by the coalitions are available through ARCH and can be used as examples to help States forming new coalitions.) Sample Mission Statements The mission of the Iowa Respite Coalition is to promote, through education, the development and support of a Statewide quality respite care system…a system which strengthens and maintains family unity for individuals with special needs. The mission of the Tennessee Respite Coalition is to promote and support Statewide planned and crisis respite services that strengthen families and enhance the quality of life for children and families with special needs. The Hawaii Respite Coalition is an alliance of agencies and individuals that was organized/formed in 2000 in the spirit of aloha to promote, support, and enhance Statewide quality respite care for any age or condition for Hawaii's ohana. Coalition Membership Respite coalitions vary widely in their membership. For example, some are made up exclusively of providers of crisis respite services, while other coalitions focus on individuals with developmental disabilities. There appears to be a trend among coalitions to broaden their memberships to include caregivers, providers, and agencies that serve individuals across the lifespan, regardless of the reason respite is needed. Although originally some groups coalesced to promote respite for families of children with special needs, there is recognition that policy makers are interested in seeing collaboration across various groups with the same basic focus. Because families with dependent members vie for the same limited respite services, coalitions are now broadening their context. Fifteen reported having representation across the lifespan, including representation from crisis respite services. Twenty State coalitions include caregivers and family members in their membership, although several States reported having difficulty recruiting family members to participate. This may be because of the expense of traveling to meetings or the lack of childcare or respite. Twenty-four of the 25 coalitions viable at the time of the survey reported State agency staff as part of their membership. Coalition Funding Dues Sixteen coalitions reported that they collect dues from their members. The average annual membership fee for an individual was $30, while the average membership fee for an organization was $50. The average membership dues reported for family members or caregivers was $10 annually. Other Funding Although 20 organizations reported receiving some form of funding to start their respite coalition, 13 no longer relied on outside financial resources. To remain viable they depended on in-kind resources of their members. Six coalitions indicated they received funding from their State Developmental Disability Council. This was frequently designated for coalition start-up, ranging from one to three years. Other reported funding sources include the Community-based Family Resource and Support (CBFRS) program and State human service agencies, such as the departments of mental health, developmental disabilities, or social services. Two coalitions reported receiving State funding from the tobacco settlement, while one reported having received funding from the State ARC. In the three States that have passed Lifespan Respite Legislation, funds under the legislation were available for staff and program development but not for coalition development. Three coalitions reported a combination of funding that included some private foundation support. Future Funding Five coalitions reported that they will continue to operate on in-kind support from their members. All other coalitions indicated they plan to continue seeking funds from private foundations, State agencies, corporations, and membership dues. Most coalitions that reported collecting dues said the income helps meet minimal operating costs. Several coalitions said they are advocating for Lifespan Respite Legislation, with support for their State coalition written into the legislation. Of the States with Lifespan Respite Legislation, only one—Wisconsin—reported receiving coalition support as part of the legislation. Staff It appears that coalitions with ongoing funding are more likely to have paid staff. Ten coalitions reported they have either a full-time or part-time paid staff person. In coalitions without funding, it was reported that the president or coalition organizer, who serves in a voluntary capacity, assumes leadership for organizing and carrying out coalition activities. Four of the coalitions surveyed indicated they plan to hire staff when funding becomes available. Meetings and Communication Meetings help coalition members network, establish goals, and make plans. A challenge for all coalitions was finding the most effective way to be inclusive and productive. Nine State coalitions said they meet monthly, seven meet bimonthly, another seven meet quarterly, and two reported they meet three times a year. Two State coalitions hold regional meetings, which they believe are more inclusive and effective than Statewide meetings. All coalitions reported meeting in person and using electronic mail extensively between meetings. Respite Awareness In 1992 ARCH began giving annual stipends to selected states to encourage States to host "Respite State Awareness Days." The stipends help pay the costs of the event. Most State respite coalitions indicated a continuing need for promoting respite awareness at the State level. Because of this, 21 coalitions hold Respite Awareness Days, in which the coalitions work to educate policy makers about the value of respite in keeping families together. Fifteen report that they receive a proclamation from their State’s governor for a specified time (either a day, week, or month) as part of the respite awareness activities. Evaluation of the Coalition Strengths of the Coalition Coalitions were asked individually to identify their major strengths. The five most common responses were
Effectiveness of State Coalition The State coalitions were asked how they measure their effectiveness. Twelve coalitions reported that they measured their effectiveness by periodically reviewing their goals and objectives in order to assess which ones had been met. At the time of the survey, 12 reported that they had no measure, either formal or informal, of their effectiveness. Challenges Facing the State Coalition The top five challenges reported during the survey were
Greatest Needs of the State Coalition The top five greatest needs reported during the survey were—
What Do the State Coalitions Need from ARCH? When asked how the ARCH National Respite Network and Resource Center may be of assistance, most coalition representatives indicated that they need:
ARCH extends a special thanks to coalition representatives from Alabama, Arkansas, Arizona, California, Colorado, Connecticut, Florida, Georgia, Hawaii, Illinois, Iowa, Louisiana, Maryland, Michigan, Missouri, Minnesota, Montana, Nevada, North Carolina, Nebraska, New Jersey, Ohio, Oklahoma, Oregon, Pennsylvania, South Carolina, South Dakota, Tennessee, Utah, Washington, and Wisconsin who participated in the survey. Thirty-one respite coalitions were surveyed via telephone by ARCH training and technical assistance coordinators in late 2001 regarding their status, nature, strengths, and needs. Of the States identified as having coalitions, only 25 reported that their coalition was viable at the time of the survey. Those coalition representatives interviewed were queried about how and why coalitions were started; their members and membership structure; what, if any, funding base they had; how often they meet and communicate; what policies and procedures they have (including goals and mission statements); and whether or not they evaluate their effectiveness. Evaluation efforts were informal if they existed at all. Twenty coalitions had some outside funding source for start-up. Eight coalitions had incorporated as nonprofits. Twenty-two had mission statements, of which 14 had by-laws. Membership generally included family caregivers, providers, and State agency personnel in addition to other key stakeholders. Sixteen coalitions collected annual membership dues and 10 have a full-time or part-time staff person. ARCH Factsheet number 56, April, 2002 This factsheet was produced by the ARCH National Respite Network and Resource Center, which is funded in part by the U.S. Department of Health and Human Services, Administration for Children, Youth and Families, Office of Child Abuse and Neglect, under discretionary grant #9CXA0019/01. The contents of this publication do not necessarily reflect the views or policies of the funders, nor does the mention of trade names, commercial products or organizations imply endorsement by the U.S. Department of Health and Human Services. This information is in the public domain. Readers are encouraged to copy and share it, but please credit the ARCH National Respite Network. |
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