Fact Sheet

In responding to House Concurrent Resolution 187, House Draft 1 (2007), the Bureau reviewed how respite care programs and states define "respite care." The Bureau also researched other states' respite care programs, particularly those that offer respite care options to caregivers who are caring for older adults or adults with chronic illnesses. Finally, the Bureau looked at how five states assess their respite care programs. The salient findings of the review are highlighted below.

1. Background and Definitions of Respite Care
    
• There are 44 million family caregivers who provide unpaid care on a regular basis to adults with disabilities or chronic conditions. Although respite care is the most requested service by caregivers, respite care services may be unavailable, inaccessible, unused, or unaffordable to a majority of caregivers.
• A 2006 national study found that nearly all caregivers wish for a significant amount of respite care. But respite care is in short supply. A 2004 study found that only five percent of caregivers were receiving respite care.
• A general definition of "respite care" refers to services that provide "temporary relief for caregivers and families who are caring for those with disabilities, chronic or terminal illnesses, or the elderly."
• Respite care services can decrease the stresses of persons and families who provide care and it can also delay the need for institutionalization of the care recipient. Respite care can occur in the home, the community, a nursing home, or an institutional health care facility.
• Respite care can occur during the day or evening, overnight, for several days, or for weekends only. Some states have service caps on respite care, ranging from 4 hours per week, to 100 days per year, to a $3,500 limit on benefits per year. Other states have variable or no caps on services.
• Respite care may be categorized as planned or crisis respite care. Planned respite care is recurrent and occurs over extended periods of time. Crisis respite care occurs on short notice, usually during a family emergency or a crisis situation.
• While all 50 states and the District of Columbia provide some level of respite care through programs and services, there are at least 16 states that include a definition of "respite care" or "respite care services" in their statutes.
• Statutory provisions for respite care vary. Some states focus on services for older adults who have specific conditions or chronic diseases, while other states' statutes make no reference to a care recipient's age or specific impairment or to financial need. Several states' statutes specify the types of settings in which respite care services may occur.
   
2. Respite Care Policies and Programs in Other States
    
• Although there are stand alone respite care programs, respite care options are most often included within a package of caregiver support services that includes information, access to training and education, case management, legal assistance, homemaker and chore assistance, transportation, or other services that assist caregivers.
• States design their respite care services by considering policy issues such as program concept, source of funding, scope of programs and services, and mode of service delivery. Other policy considerations in program designmay include whether a program is legislatively mandated, the process for eligibility determination, the amount or limit of respite care benefits, and method of outreach.
• Other major policy considerations are flexibility and consumer control. Some respite care programs allow family caregivers to determine the kinds of services and who will provide those services, including respite care, for their family member. Other programs specify that respite care must be provided by an agency provider or an independent provider who is not a family member. Still, other programs do accommodate family members, relatives, or friends as providers of paid respite care services and will pay them directly for their services.
• There are primarily two federally-funded programs that offer respite care options: the National Family Caregiver Support Program (NFCSP) and the Home and Community-Based (HCBS) Medicaid Waiver Program. All 50 states and the District of Columbia receive NFCSP funds, which are allocated through a federal formula grant. In contrast, states have to apply for a waiver to implement the HCBS program. The waiver allows states to use Medicaid funds for non-medical expenses such as respite care. Forty-one states and the District of Columbia offer respite care through the HCBS waiver program.
• Another federal initiative is the Lifespan Respite Care Act of 2006. The Act authorizes competitive grants to states to collaborate with public, private, or non- profit networks to make quality respite care services available and accessible to family caregivers regardless of the care recipient's age or disability. However, the federal Lifespan Respite Care Act of 2006 is currently unfunded. The Act was based upon model state lifespan respite care programs in Oregon, Nebraska, Wisconsin, and Oklahoma, which provide respite care to caregivers and individuals regardless of age, special need, or situation.
• In addition to federally funded programs and initiatives, thirty-one states operate separate state respite care programs using state general funds or other state sources. Some states supplement their operating funds with a variety of other sources such as tobacco settlement funds, lottery funds, client-cost share, or voluntary client contributions.

 
3. Assessing State Respite Care Programs
    
• The evaluation procedures and criteria used to assess respite care programs may differ from state to state due to differences in the program's mission and operational objectives and whether the program services primarily benefit the caregiver, the care recipient, or both.
• The methods used to assess respite care programs include annual reports, program analyses, focus groups, surveys and studies of respite care services and implementation methods. The Bureau selected existing evaluation and assessment information from five states: California, Delaware, New Jersey, Pennsylvania, and Wisconsin.
• An evaluation of thepartnership betweenthe California Inland Caregiver Resource Center and the San Bernardino County Department of Aging and Adult Services to provide respite care services utilized three assessment methods: analysis of the relationship between respite need, utilization, and outcomes; individual interviews with staff of the two agencies; and facilitation of two caregiver focus groups. The evaluators found that the greatest benefit of the agencies' respite care services appears to be a reduction in the caregivers' feelings of overwork, overload, helplessness, and worry and a reduction in the factors that contribute to a caregiver's depression.
• The Delaware Caregiver Support Coalition conducted surveys, research, and discussions to examine how respite care was being providedstatewide. Among issues and themes related to the shortcomings of Delaware's current respite care system are: caregivers' lack of awareness and understanding about the concept of respite care; gaps in availability of respite care services for those caring for persons with mental illnesses or behavioral disorders, as well as for younger individuals; and an inadequate supply of respite care options, specifically for emergency care and in- home care.
• The New Jersey Respite Care Program utilized two types of evaluative data: interviews with program staff from state and county levels and an analysis of the program's computerized administrative data. Staff interviews addressed program design, operations, strengths, and weaknesses. Administrative data files contained data elements such as care recipient characteristics, financial conditions of program participation, utilization, and expenditures. The study concluded that, from a staff perspective at the local and state levels, the program is being implemented well.
• Researchers designed a survey instrument to evaluate the Pennsylvania Elder Caregivers of Adults with Disabilities Pilot Project. The survey instrument consisted of questions about the caregiver's family, supports the family received, satisfaction levels, accessibility and flexibility to staff and services, choice and control, and other areas. The survey was used by evaluators to conduct face-to-face interviews with the caregivers enrolled in the pilot project. The evaluation showed that respite care was identified by the caregivers as the service they needed most. The caregivers also noted that the additional supports they could use include more respite care services, help with maintenance around the home, and transportation assistance.
• In Wisconsin, seven respite care programs throughout the state participated in a program that tested data collection instruments that were designed to evaluate outcomes of planned and crisis respite care. Evaluators used self-report questionnaires, face-to-face interviews, mail-outs, and telephone interviews. Evaluators found that data collected through the instruments held promise for measuring certain areas believed to indicate the effectiveness of respite care. These areas include decreasing family stress, preventing or delaying out-of-home placements; decreasing the likelihood of family destruction or family break up; and increasing the quality of family relationships.
• The evaluation information reviewed by the Bureau reflects that the five states were similarly concerned about: accurate needs assessment of caregivers; difficulty in finding an adequate supply of service providers; standardized data collection; and funds to continue evaluation efforts.