Executive Summary - 1999 ARCH National Respite Network
Survey Report

Under its contract with the US Department of Health and Human Services, Administration for Children, Youth and Families, Children’s Bureau, the ARCH National Respite Network and Resource Center for Respite and Crisis Care Services conducts an annual survey of respite and crisis care providers in its national network. In August 2000, ARCH distributed surveys to the 261 members of the National Respite Network and received 70 responses for a 27% response rate.

The great majority of 70 respondents (93%) said their agency provides respite care services, while fewer programs (37%) reported that they provide both respite and crisis care services, and only 3% said they provide crisis care alone. Three respondents (4%) indicated that they do not offer direct services for either respite care or crisis care. Instead, these programs provide information, referrals, technical assistance, training, and vouchers for respite and crisis care programs.

Seventy-one percent of these respite and crisis care programs have significant experience in the field since they have been operating for the last 6-46 years. Independent non-profit organizations comprise the most common type of agency administering respite and crisis care services among survey respondents. Most respondents (70%) replied that their agencies work in multiple settings. In addition, families that access respite or crisis care can often receive comprehensive services from the same provider for a wide variety of needs, including case management, sibling care, counseling, and parenting classes. Surveys indicate that although respite and crisis care programs support people of all ages, the majority focus on children and their families. Overall, respite only programs are more likely to serve adults than programs that also offer crisis care. Survey results show that 76% of respite only providers support clients over the age of 21 as compared to 25% of crisis/respite providers.

Almost half of all survey respondents ( 49%) said that they provide care to clients who do not speak English. In particular, the majority of these programs (91%) serve Spanish-speaking clients. Other languages listed in returned surveys include Hmong, Russian, Korean, African dialects, Romanian, Tagalog, French, American Sign Language, and Braille. A significant difference exists between programs that provide respite care only and those that offer both respite and crisis care services. Thirty-nine percent of respite only providers said they serve clients who do not speak English as compared to 68% of programs that also offer crisis care. Given the specific needs of non-English speaking clients, 26% of all respondents have translated program materials into foreign languages.

Respite programs help families prevent crisis by reducing stress. They allow caregivers to take a break from caring for children or dependent adults with serious medical or emotional conditions or disabilities. Respite clients include, among others, people with developmental disabilities (89%), mental retardation (84%), and autism (82%). These programs serve most of their clients in their home (79%) or in the home of the service provider (59%) at an average cost that is less than $13.00 per hour. Respite clients are most likely to live in two-parent households (48%) and represent all income levels.

Crisis care programs provide basic services to families in imminent need.  They frequently offer both emergency services (81%) and 24-hour care (96%). Crisis care clients tend to live in single-parent households (56%) with very low incomes. For example, providers estimate that 75% of families using crisis care earn less than $15,000 annually. Although both respite and crisis care providers support families of people with disabilities, the surveys demonstrate that programs that provide crisis care emphasize different types of needs than programs that only offer respite care. Crisis care respondents listed potential abuse or neglect (89%), a history of abuse or neglect (82%), or attention deficit disorder (82%) as common characteristics of their clients. In addition to family and provider homes, crisis care clients can frequently access services in residential facilities. The average estimated cost of programs providing both crisis and respite care is approximately $18.00 per hour. 

Of the 51 programs that responded to the survey, respite providers reported serving 9,604 families during the year. They reported delivering 1,216,866 hours of service for an average of 23,860 per program. Crisis care providers reported serving 4,056 families in 1999. Crisis care programs, which often provide 24-hour care, supplied significantly more hours than planned respite care agencies. The 17 crisis care programs reported 889,100 service hours during the year, for an average of 52,300 hours per program.

Both respite and crisis care providers worked to minimize the number of families on their waiting lists as well as the number of families turned away. Consequently, 71% of crisis care programs and 40% of respite care programs had no families on their waiting list at the time of the survey. In addition, 40% of both respite and crisis care programs reported that they did not deny services to anyone who requested help in 1999. Despite their efforts, the demand for services exceeded its availability and many programs reported long waiting lists and turning away families.

In general, respite programs had longer waiting lists than crisis care programs–an average of 26 compared to 2 families. In contrast, individual crisis care programs had a much higher average number of families denied service than respite programs–141 families turned away in 1999 compared to 23 families who sought respite care. These numbers reflect the different types of services provided by respite and crisis care programs. Respite programs can maintain longer waiting lists because their clients elect to receive services, and are not usually experiencing a crisis. Crisis care providers serve clients with short-term emergency needs, many of whom cannot wait for services. The nature of service upon demand requires crisis care programs to turn away clients when they cannot meet the overall need in their area.

Survey responses indicated that respite and crisis care programs financed their programs through multiple sources. On average, funding from state, county, and city streams covered 46% of program expenses. The federal government  contributed 25% of funding for respite and crisis care. Finally, private funds and user fees constituted 24% of local program operating costs. Programs gathered the remaining 5% from other sources.

The full report is available in Adobe PDF format.