Support Family and Informal Caregivers Respite

Goal: Informal, unpaid caregivers are the bedrock of the long term care system in Texas. The state should recognize the demands they face by expanding respite care services.

Problem: However, these informal caregivers—family and friends who care for people with disabilities who need assistance with daily activities to remain in their homes—are often juggling other family and work responsibilities in addition to their care giving. Many need respite – a temporary short-term break from care giving duties.

Recommendation: The Texas Legislature needs to fund respite services for unpaid caregivers who have a care partner that does not qualify for Medicaid.

Background: Informal caregivers are family and friends who provide unpaid care to people with disabilities who want to remain in their homes, but need assistance with daily activities. Seventy-eight percent of adults receiving long term supports at home depend exclusively on help from family and friends, and not on paid service or institutions. Respite provides caregivers a temporary short-term break from care giving duties.

The federally-funded Family Caregiver Support Program (FCSP) currently provides respite to caregivers of adults 60 years and older. This existing program provides an infrastructure for expanding our respite system to caregivers of adults age 18 to 59.

Justification: Respite is the most frequent service requested by informal caregivers to help them continue to provide at-home care. It offers them a much-needed, short-term break from their care responsibilities. Research shows respite reduces the strain of care giving responsibilities, allows caregivers to remain in the workforce and delays or prevents long-term institutionalization of care recipients.

Providing respite care is good for Texas:

• It’s good for the economy. By staying in the workforce, Texas caregivers boost the state economy. Providing care to a loved one is often a full-time job, so much so that many caregivers currently have no choice but to leave the workforce. Respite care is essential to keep these Texans in the workplace.
• It’s good for the state budget. Informal caregivers reduce the state’s long-term care costs by provide an estimated 2.9 billion hours of care per year, a market value of $24 billion. According to the Legislative Budget Board, there are 393,000 older adults and persons with disabilities in Texas who need help with daily living and live at or below 220 percent of the federal poverty level, receiving all long-term care from families and friends—informal caregivers—rather than paid services or institutions. If they were to instead receive institutional services through Medicaid, the annual cost is estimated to be from $2.7 billion to $10.7 billion.
• It’s good for families. The challenges of family care are a reality of daily life for millions of families. Care provided by family and friends can determine whether a person with a serious health condition or disability can live at home rather than in an institution. Research has shown that providing care often extracts a heavy emotional, physical and financial toll, even while it is often a source of great personal satisfaction.
• Despite their contributions, family caregivers continue to be the most neglected group of the health and long term service system. Research has shown that support services reduce the burden, stress and depression associated with care giving responsibilities.

A relatively small investment by the State could help these Texans remain in our workforce and delay or prevent institutionalization for the individuals to whom they provide care.