Lifespan Respite

• What is Lifespan Respite?
• States Move Toward Passing Lifespan Respite Bills
• The Need for Respite is Overwhelming
• Millions of Families Face Serious Stressors
• Caregiving Takes a Significant Toll on the Caregiver
• Respite is Not Costly and It Works

S. 2489: Lifespan
Respite Care Act of 2002
(PDF)

Lifespan Respite is a coordinated system of accessible, community-based respite care services for caregivers and individuals regardless of age, race, ethnicity, special need or situation. Respite care is planned or emergency short-term relief to caregivers from the demands of ongoing care for an individual with special needs or at risk of abuse or neglect. Special needs may include any disability, any chronic or terminal physical, emotional, cognitive or mental health condition requiring ongoing care and supervision, including Alzheimer’s disease and related disorders, developmental disabilities, children with special medical needs, and any other condition determined by the state. Crisis respite may also be used to provide a temporary safe haven for the care recipient in the event of an emergency brought on by domestic violence, substance abuse, or a housing, health or job crisis.

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• As of April 2001, three states had passed Lifespan Respite Acts (OR, NE, WI), which establish state and local infrastructures for developing, providing, coordinating and improving access for lifespan respite to residents of the state who are eligible for such services. Oklahoma has implemented a Lifespan Respite Program without legislation. Maryland has passed a bill, which establishes a statewide respite coordinator (MD). Several other states are actively considering or piloting similar programs or legislation.

• The need for state and national respite infrastructure is compelling. In the last year, the National Family Caregiver Support Act (NFCA) was enacted and implemented across the country. This Act establishes a family caregiver support system that provides respite, support and counseling services through area agencies on aging, but is available only for individuals caring for the elderly, and to a much lesser extent, older caregivers caring for grandchildren or adult children with disabilities. While NFCA recognizes the value and justifies the need for a system of respite care and caregiver support, there is no single, coordinated, family/caregiver friendly federal program to support the development or implementation of Lifespan Respite Services nationwide. This is especially compelling because numerous federal programs continue to have the potential, although they may not have adequate resources, to fund respite or crisis services for caregivers of individuals with specific disabilities, specific ages, or for one narrow purpose. As a result of this fragmentation and insufficient dollars, State governments, as well as families are still forced to search for services, funding, and support, where they may or may not exist, often in a complicated bureaucratic maze (Guide to Federal Funding for Respite and Crisis Care Programs, ARCH, July 1999)

• In a survey of 33 caregiver support programs in 15 states, it was found that eligibility criteria for programs vary widely by diagnostic /functional level, age and income. Over two thirds of these programs provide five or more caregiver services, most typically respite care. For respite assistance in particular, service definition, eligibility, mode of delivery and funding vary widely across programs and within states. Key informants report that while respite care is among the most beneficial aspects of their programs, recruiting respite workers/raising worker wages is also among the biggest challenges these state programs face. Respondents recommended more funding in general and more funding for respite care in particular. Oregon’s Lifespan Respite Care Program was identified as one of the five best practice models among the 33 programs surveyed (Family Caregiver Alliance, Oct. 1999).

• The Olmsted decision compelled the National Conference of State Legislatures to offer states assistance in developing long-term community-based services for the elderly and people with disabilities. In a recent NCSL Issue Brief, Promising Practices: Community-Based Long-Term Care, the following three models were identified: consumer directed care, managed long-term care and enhanced respite care. The Nebraska Lifespan Respite Program was highlighted (National Conference of State Legislatures, May 2001).

Respite has been shown to be a key component, one that families and caregivers most often request, of child care, elder care, comprehensive family support, family caregiver, health and long-term care, family violence or child abuse prevention strategies. Yet, respite remains in critically short supply for all age groups, for all families in crisis, and for caregivers of the elderly and individuals with disabilities.

• During an average week, nearly 1,500 families representing 3,425 children are turned away from respite and crisis care programs because resources to meet the need are absent. In a 1998 survey of respite programs nationwide, half had families waiting for respite care at the time of the survey (ARCH National Resource Center on Respite and Crisis Care, 1999). Twenty of 35 state-sponsored respite programs for the older population surveyed in 1991 reported that they were unable to meet the demand for respite services (Lindeman and Soos, 1991)

• By 2020, the number of adults requiring assistance with daily living will increase to almost 40 million and the number of elderly requiring long-term care will double (General Accounting Office, 1994). More than half of Americans (54%) say it is likely that they will be responsible for the care of an elderly parent or relative in the next ten years (National Partnership for Women and Families, 1998). Despite these numbers, families caring for the elderly or adults with disabilities have even fewer respite options.

• Current estimates suggest that there are between 24 and 28 million family caregivers in America. One estimate suggests that they may be as many as 54 million people who were caregivers for a family member or friend in 2000 (National Family Caregiver Association, July 2000). About 60 to 65% of the individuals requiring care are the elderly (Gould, United Hospital Fund, Summer 1999). According to the National Survey of Families and Households, an estimated one-third of adults between the ages of 20 and 75 are providing some type of informal care to an ill or disabled family member or friend. The largest share of this informal caregiving goes to parents (38%), next to non-kin (24%), other relatives (20%), spouses (11%), and children (7%) (Stone, Robyn, Family Caregiver Alliance Conference proceedings, Oct. 1999).

• Families of children with disabilities or chronic illness have unique and ongoing needs that present special demands and can increase family stress. Over six million children who have a disability or developmental delay are eligible for or receive special education and related services under the Individuals with Disabilities Education Act (IDEA), including IDEA’s preschool and early intervention program. (U.S. Department of Education, Twenty-second Annual Report to Congress on the Implementation of the Individuals with Disabilities Education Act, 2000)

Elderly grandparents, often without adequate family supports, are acting as primary caregivers of their grandchildren, with and without disabilities. Currently, there are more than 2.5 million grandparent-headed households raising 3.9 million children in the U.S. The number of these families without either parent present increased 53% between 1990 and 1998 and now over 1.3 million children are being raised solely by their grandparents (U.S. Bureau of the Census, 1998 Current Population Survey). Despite these statistics, most states and counties do not fund respite for these caregivers (Generations United, Jan. 2000).

• In 1999, 826,000 children were the victims of substantiated or indicated child abuse and neglect. CPS agencies investigated an estimated 2 million reports alleging the maltreatment of almost 3 million children (Department of Health and Human Services, Press Release, April 2, 2001)

• Without adequate family support, it is estimated that children with disabilities are 3.76 times more likely to be victims of neglect, 3.79 times more likely to be physically abused, 3.88 times more likely to experience emotional abuse, and 3.14 times more likely to be sexually assaulted than children without disabilities (Sullivan & Knutson, 2000).

• Experts estimate that as many as 32 out of 1,000 elderly people are victims of elder abuse (Journal of the American Geriatrics Society 2000, 48: 205-208). A 1996 national incidence study found that 450,000 persons aged 60 and over in domestic settings experienced abuse or neglect in a one-year period. It is estimated that over five times as many new incidents of abuse and neglect were unreported than those that were reported to and substantiated by Adult Protective Services agencies in 1996. In 90% of cases, the perpetrator was a family member; two-thirds of the perpetrators were adult children or spouses. (The National Elder Abuse Incidence Study, National Center on Elder Abuse, Sept. 1998).

• It is estimated that 2 to 4 million women are victims of domestic violence, and between 3.3 and 10 million children are exposed to domestic violence, each year (Novello, Antonio, 1992; Future of Children, Winter, 1999). Yet prevention and intervention services are in short supply. The 1997 National Directory of Domestic Violence programs indicates that the total number of shelter-based programs had grown to 1,305, and that 72.4% of those programs offered some type of children’s services (Saarhoff and Stoffel, 1999). However, many battered women do not utilize shelters either by choice or because these services are not available (Future of Children, Winter 1999). In addition, although most children exposed to domestic violence do not go to shelters, only 56% of 1,886 community-based domestic violence providers offered some form of services for nonresident children (Saarhoff and Stoffel, 1999).

Substantial numbers of the 1.8 million children in all types of kinship care (private, foster care, voluntary) face socioeconomic risks to their health and development. Two in five (41%) live in families with income less than 100% of the federal poverty level and one in three (36%) live with a caretaker without a high school degree. Of even greater concern, one in five (20%) face three or more risks simultaneously (Urban Institute, February 2001).

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• As many as one-fourth to two-thirds of caregivers report physical or mental health problems due to caregiving. A recent survey of caregivers of children, adults and the disabled conducted by the National Family Caregivers Association, found that while 70% of the respondents reported finding an inner strength they didn’t know they had, 27% reported having more headaches, 24% reported stomach disorders, 41% more back pain, 51% more sleeplessness and 61% reported more depression (National Family Caregivers Association, http://nfcacares.org/survey.html, April 30, 2000).

• A recent JAMA study found that participants who were providing care for an elderly individual with a disability and experiencing caregiver strain had mortality risks that were 63% higher than noncaregiving controls (Schulz and Beach, December 1999).

• The financial stress, as well as the poor health status of grandparent caregivers can be enormous. In 1997, grandparent caregivers were 60% more likely to live in poverty that grandparents not raising grandchildren. In addition, in 1997, 33.6% of grandmothers and 28.7% of grandfathers of all grandparent-maintained families self-reported their general state of health as fair or poor (Generations United, Jan. 2000).

• Forty-two percent of families of children with special needs lack basic workplace supports such as paid sick leave and vacation time (National Family Caregiver Association, Spring 2001) and their families face a significantly higher divorce rate than families of children without disabilities (U.S. House of Representatives, Select Committee on Children, Youth, and Families, 1984).

• In an Iowa survey of parents of children with disabilities, a significant relationship was demonstrated between the severity of a child’s disability and their parents missing more work hours than other employees. They also found that the lack of available respite care appeared to interfere with parents accepting job opportunities. (Ableson, A.G., 1999)

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Without respite and other supports for family caregivers, many additional older individuals, adults with disabilities and children would receive more costly care services in institutional or foster care placements.

Respite for Younger Family Members with Disabilities Improves Family Stability, Reduces Chances of Out-of Home Placements

• Respite has been shown to improve family functioning, improve satisfaction with life, enhance the capacity to cope with stress, and improve attitudes toward the family member with a disability (Cohen and Warren, 1985). In a 1989 national survey of families of a child with a disability, 74% reported that respite had made a significant difference in their ability to provide care at home; 35% of the respite users indicated that without respite services they would have considered out-of-home-placement for their family member (Knoll, James, Human Services Research Institute, March, 1989)

• There was a statistically significant reduction in somatic complaints by in a study of primary caregivers of children with chronic illnesses, and a decrease in the number of hospitalization days required by children, as a direct result of respite care (Sherman, B.R., 1995).

• Preliminary data from an ongoing research project of the Oklahoma State University on the effects of respite care found that the number of hospitalizations, as well as the number of medical care claims decreased as the number of respite care days increased (FY 1998 Oklahoma Maternal and Child Health Block Grant Annual Report, July 1999). A Massachusetts social services program designed to provide cost-effective family-centered respite care for children with complex medical needs found that for families participating for more than one year, the number of hospitalizations decreased by 75%, physician visits decreased by 64%, and antibiotics use decreased by 71% (Mausner, S., 1995).

• An evaluation of the Iowa Respite Child Care Project for families parenting a child with developmental disabilities found that when respite care is used by the families, there is a statistically significant decrease in foster care placement (Cowen, Perle Slavik, 1996).

• A study of Vermont’s 10 year old respite care program for families with children or adolescents with serious emotional disturbance found that participating families experience fewer out-of-home placements than nonusers and were more optimistic about their future capabilities to take care of their children (Bruns, Eric, November, 15, 1999).

• Respite care for the elderly with chronic disabilities in the study group resulted in fewer hospital admissions for acute medical care than for two other control groups who received no respite care (Chang, J.I., Karuza, J., Katz, P.R, et al, Journal of the American Board of Family Practice, 5: 1992).

• Sixty-four percent of caregivers of the elderly receiving 4 hours of respite per week after one year reported improved physical health, 78% improved their emotional health, and 50% cited improvement in the care recipient as well. Forty percent said they were less likely to institutionalize the care recipient because of respite (Theis, S.L., et al, 1994).

• Caregivers of relatives with dementia who use adult day care experience lower levels of caregiving related stress and better psychological well-being than a control group not using this service. These differences are found in both short-term (3 months) and long-term (12 months) users. (Zarit, S.H. et al, 1998)

• Very high percentages of children in high-risk families using crisis respite have avoided reports to child protective services, and most remain living safely with their families. One Iowa crisis program found a 13% decrease in the reported incidence of child abuse and neglect in the initial four pilot counties after the program’s implementation (Cowen, Perle Slavik, 1992).

• An evaluation of a respite care project targeted to families in a high risk community found that: one out of four mothers reported positive changes in their relationships with their children, and 50 percent of the mothers noted positive changes in their children’s behavior. Of the 25 families referred to the project following a request for child placement, over two-thirds did not proceed with placement plans. (Home, A. and Darveau Fournie, L., 1995).

• In a recent evaluation study of families of children at risk of abuse or neglect who utilized Family Support Services of the Bay Area’s Respite Care Program in northern California, over 90% of the families using the service reported reduced stress (93%), improved family relationships (90%), improved positive attitudes toward child (93%), and other significant benefits that can help reduce the risk of abuse (Owens, Sandra, et al, School of Social Welfare, Berkeley, California, 1999).

• In April, 1999, the Minnesota Dept. of Human Services, Family and Children’s Services Division, reported that crisis nursery clients in 15 crisis nursery programs serving 18 counties showed a 67% reduction in child protection involvement after using nursery services. The Hennepin County Children and Family Services Department’s evaluation of the Greater Minneapolis Crisis Nursery found that families with prior child protection involvement who used the Nursery had only an 8% risk factor compared with an 84% risk factor for families who did not use the Nursery.

• The Relief Nursery in Eugene, Oregon, reports that in 1997-98, 91.3%of children attending the Nursery were free of any reports of abuse, and 89% had no involvement with foster care. This is remarkable, because two-thirds of the families had more than ten risk factors, and 95% had five or more. A family with five risk factors is deemed to be at extremely high risk for abuse and neglect.

• Of the more than 25,000 children whose families used the services of the Vanessa Behan Crisis Nursery (a 24-hour, 7-day-a week shelter program for at-risk children in Spokane, WA), not one has sustained a life-threatening injury since the nursery opened its doors in 1987 (U.S. Dept. of Justice, Safe from the Start," November, 2000).

• In Nebraska, a newly formed statewide lifespan respite program conducted a statewide survey of a broad array of caregivers who had been receiving respite services, and found that one out of four families with children under 21 reported that they were less likely to place their child in out-of-home care once respite services were available. In addition, 79% of the respondents reported decreased stress and 58% reported decreased isolation (Jackson, Barbara, Munroe-Meyer Institute, University of NE Medical Center, January 2001).

• Preliminary findings of an outcome based evaluation being piloted in 17 respite and crisis respite sites serving different age groups across the country are promising. While only fifteen (15%) percent of the caregivers reported that it was "somewhat likely" to "highly likely" that their child might have been mistreated or neglected if crisis care had not been available, and an additional 15% responded "not sure," 81% reported that the crisis care they received helped protect their child from danger. Ninety percent (90%) of the caregivers found that crisis care reduced their stress "quite a bit," "very much," or "extremely," with "extremely" accounting for nearly 3/5 (57%) of respondents. More than half (54%) reported that with respite, their relationship with their dependant family member had improved "quite a bit," very much," or "extremely" (Kirk, Raymond, and Wade, Casandra, 2001)

• According to the National Long-Term Care Survey, which includes only caregivers of adults over 65 enrolled in Medicare, there are over seven million people who are informal caregivers who provide unpaid help to older people living in the community with at least one limitation in their activities of daily living. According to the survey, if the work of these caregivers had to be replaced by paid home care staff, the cost to our nation would be $45 to $75 billion per year (U.S. Dept. of Health and Human Services, Administration on Aging website, www.aoa.dhhs.gov/May99/caregier.html). Other studies have suggested that caregivers now provide nearly $200 billion per year in unpaid care, saving the government billions of dollars in paid institutional long-term care costs (McConnell, Stephen, Family Caregiver Alliance Conference Proceedings, Oct 99).

• U.S. businesses also incur high costs in terms of decreased productivity by stressed working caregivers. A recent study by MetLife estimates the loss to U.S. employers to be between $11.4 to $29 billion per year. This includes replacement costs for employees who quit because of overwhelming caregiving responsibilities, absenteeism, and workday interruptions. (Metropolitan Life Insurance Company, 1997)

Respite care is one of the services that Alzheimer’s caregivers say they need most. A recent study found that if respite care delays institutionalization of a person with Alzheimer’s disease by as little as a month, $1.12 billion is saved annually (Leon, et al., 1998). A similar study in 1995 found that as respite use increased, the probability of nursing home placement decreased significantly (Kosloski, K. and Montgomery, R.J.V., 1995).