Lifespan Respite Care, an Investment in Wisconsin Families
Care giving is a nearly universal experience for families. Due to medical advances, life spans have increased dramatically. The majority of people now die from the effects of a chronic condition. Care giving, which was once typically a short-term experience, now often lasts for years or decades. In some cases, such as when children are born with congenital disorders or developmental disabilities, it lasts an entire lifetime.
Family caregivers provide approximately 80% of all long-term services and supports for family members and friends. The services provided each year by family caregivers are conservatively estimated to be worth $257 billion. This figure is comparable to 20% of all health care spending. Wisconsin family caregivers provide almost $4 billion in care giving services annually. Wisconsin ranks 18th in the nation for dollar value caregivers contribute.
As family caregivers save society substantial amounts of money, they put their own health and well-being at risk. Many are forced to forgo career opportunities to accommodate care giving. Out-of-pocket medical expenses for a family that has a member with a disabling or chronic condition are more than 2.5 times greater than for a family without a family member with a disabling or chronic condition. Family caregivers are more likely to experience symptoms of depression or anxiety. Among caregivers who provide more than 21 hours of care per week, 61 percent suffer from depression. The stress of care giving has been shown to affect the immune system resulting in increased chances of developing a chronic illness and slowed wound healing. Caregivers report chronic stress, family conflicts, and failure to meet their own personal and emotional needs. The divorce rate for family caregivers exceeds 80%.
High quality, accessible respite care ought to be a key component of a system of supports for families. Respite, the most frequently requested family support service, gives caregivers the occasional relief needed to sustain their own health and well-being. Respite also allows the caregiver to attend to the needs of other family members. In crisis situations, respite provides a temporary haven to the person for whom the caregiver provides care.
Outcome evaluation of respite care has demonstrated that respite helps to sustain family stability, avoid expensive out-of-home placements, and reduce the likelihood of abuse and neglect. Caregiver stress is reduced substantially when short periods of respite are provided on a regular basis. Respite may also reduce the likelihood of divorce and help sustain marriages. These positive outcomes are achieved at a relatively small cost.
Respite is often unavailable to caregivers; or is inaccessible because of eligibility requirements, cost, geographic barriers, or the lack of culturally sensitive programs. Locating funding for respite is typically a frustrating experience for families, with funding scattered across a variety of programs, each with unique eligibility requirements and policies.
Lifespan Respite Care systems provide much-needed support for families, and help prevent expensive consequences resulting from the high levels of stress experienced by family caregivers. Lifespan systems identify and coordinate federal, state, and community-based respite resources and funding streams across ages, disabilities and family circumstances. Families are able to access an array of affordable, quality respite care services. Lifespan systems help families locate, train, and pay for respite.
Lifespan Respite Care systems are an effective and cost-effective way to support families caring for a loved one with special needs. RCAW works to ensure that all Wisconsin families have access to quality systems of respite care across the lifespan. There is much to be done. Funding is needed to implement Lifespan Respite Care systems serving all Wisconsin communities. Outcome evaluation data strongly suggests that respite makes sense by virtue of helping to prevent the expensive consequences associated with caregiver stress. Respite also makes sense in terms of the intrinsic value to be found in supporting Wisconsin's most important resources - its families.
Learn more about family caregivers and public policy considerations.
Learn more about state policy trends and model respite programs.
Learn more about cost savings from respite care.
Learn more about family care giving as a public health concern.