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.
- Background and Definitions of Respite Care
Respite Care Policies and Programs in Other States
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
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.
Assessing State Respite Care Programs
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.
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