"There are only four kinds of people in the world – those who are caregivers, those who were caregivers, those who will be caregivers, and those who will need care."
Rosalynn Carter,
Former first lady of the United States,
Board president of the Rosalynn Carter Institute for Caregiving
Informal caregivers, those relatives and friends who provide unpaid care to disabled and older individuals, are considered the backbone of the long-term care system. [1]
In recognition of the importance of informal care to the growing aging and disabled populations in Texas, the Texas Department of Aging and Disability Services (DADS) undertook an examination of caregiver supports in order to identify the needs of aging caregivers and grandparents who are caregivers. A series of focus groups involving caregivers, service providers, and other community stakeholders were held throughout the state. These meetings sought to obtain information on the needs of informal caregivers, the services available to them, their general level of access to those services, and any significant gaps in that system of services and supports . Preceded by an overview of caregiving in Texas and a discussion of the national and state infrastructure of long-term services and supports, stakeholder recommendations from these focus groups have been analyzed and grouped for inclusion in this report.
The National Family Caregiver Support Program (NFCSP) within the federal Department of Health and Human Services' Administration on Aging (AoA) provides grants to state agencies, based on their share of the population aged 70 and older, to fund (through Area Agencies on Aging) a range of supports that assist family and informal caregivers to care for their loved ones at home for as long as possible. Executive Order RP-42, the Aging Texas Well Mandate, dated April 1, 2005, requires a review of state policy by DADS, with the advice of the Aging Texas Well Advisory Committee, that concentrates on current critical trends, including improving services and supports for informal caregivers of family members or loved ones. [2] In direct response to the NFCSP Executive Order RP-42 signed by Gov. Rick Perry, this report seeks to identify what Texas can do to better support informal caregivers, thus encouraging and allowing them to provide necessary services in the home for as long as possible.
The Older Americans Act (OAA) defines a caregiver as "an adult family member, or another individual, who is an informal provider of in-home and community care to an older individual…" [3] A grandparent or older individual who is a relative caregiver is defined as "a grandparent or step-grandparent of a child, or a relative of a child by blood, marriage, or adoption who is 55 years of age or older and lives with the child; is the primary caregiver; and has a legal relationship to the child, or is raising the child informally." [4] While there can be several definitions and many different profiles of relative or family caregivers, this report focuses primarily on caregivers who are themselves aging, whether they are caring for an elderly relative or friend or are a grandparent caring for a grandchild.
Updated: April 11, 2012