Projections by the Social Security Administration suggest 20 percent of Americans will be aged 65 or older by the year 2030. That same group comprised only about 12 percent of the population in 2006. [31] In Texas, between 2010 and 2040, the population aged 60 and older is expected to increase from 3.7 million to 9.4 million, an expansion of almost 50 percent. [32] Increased longevity is also expected to result in an expansion by more than 50 percent in the number of Texans age 85 and older by 2020. Since family caregivers are the greater part of the long-term care system in America, this expected significant increase in the population of older individuals raises concerns about the ability of informal caregivers to continue to fill this role.
Informal care is estimated to be worth almost three times the cost of formal, publicly funded care. With as many as 44 million family caregivers in the United States, the annual value of unpaid care in 2007 was approximately $375 billion. [33] In Texas alone, that value comes to nearly $26 billion, which is greater than the total state Medicaid expenditures, and more than five times the spending for Medicaid on long-term care. [34]
In the absence of a comprehensive national system of long-term services and supports, many states have developed their own systems, primarily funded by Medicaid and state general revenues. [35] Texas faces a growing need for these services and supports due to a rapidly growing aging population, changes in social infrastructure that limit the number and availability of informal caregivers, consumer preference for home and community-based services, and mounting constraints on state and federal resources, most notably Medicaid.
Texas policymakers have focused on creating a system of supports that will enable and encourage informal caregivers to sustain their caregiving role longer and maintain a healthy balance in their own lives. Supports for caregivers include respite services, information and assistance, education and training, and counseling. These supports are provided through a variety of sources, such as Area Agencies on Aging (AAAs) and their networks, community social services, state-funded respite services programs, Medicaid Personal Care services, Medicaid home- and community-based service waiver programs, and volunteer networks.
Most caregivers continue to face considerable demands on their time and finances that threaten their willingness and capacity to continue to assume most of the responsibility for the care of their loved one. Unchecked, these demands could result in caregivers' inability to maintain their roles, producing a further decline in the availability of informal care. This resulting shortfall would have significant financial and programmatic implications for the state in its efforts to provide a system of long-term services and supports.
The Older Americans Act (OAA) was signed into law by President Lyndon B. Johnson in 1965, and has served as the primary vehicle for providing and coordinating community-based services for older Americans and their families. In its Declaration of Objectives, the OAA states that older adults should have "opportunities for a comprehensive array of community-based long term care services adequate to sustain people in their communities and in their homes, including support to family members and other persons providing voluntary care to older individuals needing long-term care services." [36]
OAA programs include services targeted at low-income minorities, in-home services for frail elderly, and services that protect the rights of older individuals, such as the long-term care ombudsman program. These programs support the nearly 38 million Americans who are age 65 or older, [37] including approximately 5.5 million Americans aged 85 and older — many of whom live alone without caregivers, live in institutional settings, suffer mental and physical impairments, have low income, or live in rural areas with limited access to services and supports.
The OAA established the U.S. Administration on Aging within the Department of Health and Human Services. [38] The OAA also authorized grants to states for community planning and service programs, and for research, demonstration and training projects in the field of aging. Subsequent amendments provided grants to AAAs for local needs identification, planning, and funding of services, including nutrition programs, services for low-income minority elders, health promotion and disease prevention activities, and long-term care ombudsman programs to protect the rights of older individuals.
In 2000 and 2006, the OAA was reauthorized with several amendments signed into law. One of the most significant developments from the 2000 amendments was the creation of the National Family Caregiver Support Program (NFCSP), "designed to assist the hundreds of thousands of family caregivers of older loved ones who are ill or who have disabilities". [39]
Recognizing family members as the predominant caregivers among non-institutionalized individuals needing assistance with activities of daily living, Congress in 2006 allocated $155 million to the NFCSP for grants to state agencies on aging. This represented an increase of $30 million over previous funding years. [40] The program called for state agencies on aging to work with AAAs and community and service organizations to provide support services to family caregivers. Also under the fiscal 2000 amendments, states and AAAs were granted greater flexibility in developing comprehensive, coordinated service systems.
In 2006, the OAA definition of "caregiver" was expanded to include those caring for older individuals with Alzheimer's disease. [41] This and other 2006 amendments allowed AAAs to continue to provide services and supports, while consolidating and streamlining many AAA programs. The amendments retained the provisions for low- income members of minority groups, individuals living in rural areas, and added a focus for individuals with limited English proficiency. The amendments also retained priority services, thereby emphasizing access, in-home, and legal services. [42] The 2006 reauthorization of the OAA supports the NFCSP's continued mission of supporting the growing needs of aging caregivers.
The bulk of public caregiver supports comes from the NFCSP, which explicitly addresses the information and service needs of caregivers, allowing states to establish or build on existing caregiver support programs. Like many other states without existing official programs for informal or family caregivers, Texas utilized the NFCSP funding to develop infrastructure to support them.
The NFCSP calls for states, working in partnership with AAAs and local community service providers, to offer five basic services for family caregivers:
The intent of the NFCSP is to provide a range of services that best meet the needs of family caregivers while providing adequate flexibility through the supplemental service category. Eligible populations include family caregivers of older adults (age 60 and older) and individuals with Alzheimer's disease, and grandparents and relative caregivers of children not more than 18 years of age. Under the NFCSP, states are required to give priority consideration to individuals in greatest social and economic need (with particular attention to low-income, minority individuals), and older individuals providing care and support to individuals with mental retardation and related developmental disabilities. [44]
In accordance with the OAA, eligibility for services under NFCSP programs is typically limited to family caregivers of older individuals determined to be frail either because of inability to perform unassisted at least two activities of daily living, or need for substantial supervision because of cognitive or other mental impairment. In addition, supplemental services such as personal assistance or homemaker services that may be available under this program may not supplement or duplicate any formal or informal services already in place for the care recipient.
Under the federal OAA, AAAs are administratively responsible for the development of a comprehensive and coordinated system of services for the population aged 60 and older. This includes serving as a centralized location for caregiver services and supports through the Family Caregiver Support Program. The purpose of the program is to educate, support, and empower caregivers who care for individuals aged 60 and older or individuals with disabilities.
Texas has 28 AAAs throughout the state that deliver a range of services to individuals aged 60 and older. While DADS provides statewide oversight and support for the AAAs, each AAA functions independently to identify specific local needs and develop innovative approaches to service delivery. AAAs are managed locally throughout the state; they are not entities of DADS, nor are their staff state employees. Within each service area, the AAAs plan, coordinate, and advocate for a comprehensive service- delivery system to address the short- and long-term needs of older Texans.
The heart of the service network is an all-inclusive system of access and assistance. This key role is designed to help older individuals, their family members, and caregivers more easily obtain services and information. Whether consumers need general information, advice on government benefits, ombudsman services, legal assistance, service authorization or care coordination for individuals who need numerous services, AAAs either directly provide information and services or refer individuals to an appropriate resource. Access and assistance services provided by the AAAs (directly and through contractor and vendor agreements) help individuals receive the information and assistance they need to obtain resources.
In Texas, AAAs also provide a broad system of supports for caregivers (the Appendix details caregiver supports provided through AAAs). Most AAAs employ full-time caregiver specialists who are responsible for disseminating information about available resources and coordinating access to services and supports. AAAs rely heavily on the support of local community partnerships and a network of volunteers to meet the needs of a growing and diverse client base. They also play a critical role in coordinating caregiver support in Texas and in helping develop the infrastructure necessary to meet the needs of the growing population of caregivers across the state.
In House Bill 802, 81st Legislature, Regular Session, 2009, Texas legislators created and funded the Lifespan Respite Services Program within DADS. Largely a service facilitation and coordination effort, this program seeks to support caregivers through connecting them to respite providers in their communities, voucher provision (to those not eligible for other respite services), and public awareness activities regarding available respite services. In addition, in September 2009, DADS received a $200,000 grant from AoA to support and expand these respite access efforts through the creation of a Texas Respite Coalition Coordination Center.
In further support to caregivers, Senate Bill 271, 81st Legislature, Regular Session, 2009, requires DADS to coordinate public outreach efforts regarding the role of informal caregivers in long-term care situations with AAAs (and other local entities). Under this law, DADS is also required to incorporate the identification of informal caregivers into its functional eligibility determination process for long-term care under Medicaid and to refer those identified to available support services. DADS is further directed to develop and implement a standardized assessment tool to evaluate the needs of informal caregivers who access local services. Data gathered from these assessments will be reported to the governor and the Legislative Budget Board beginning in 2012.
In fiscal 2008, AAA service providers in Texas reached an estimated audience of almost 13 million with information services related to caregiver services and provided access assistance to more than 14,000 caregivers (estimated). They accomplished the delivery of services ranging from counseling and training to respite through a network of more than 600 service providers throughout the state. Further detail and expenditures for each service area can be seen in Figure 3.
| Title III-E expenditures (federal $) |
Total service expenditures (all sources) |
Number of caregivers served (unduplicated) |
Number of providers (unduplicated) |
|
|---|---|---|---|---|
| Counseling/ support groups/ caregiver training | $674,055 | $898,740 | 3,388 | 29 |
| Respite care | $2,273,041 | $2,851,264 | 3,157 | 350 |
| Supplemental services | $1,675,686 | $2,182,318 | 5,425 | 261 |
| Access assistance | $1,871,195 | $2,373,893 | 14,137 (estimated caregivers) |
39 |
| Information services | $1,093,284 | $1,437,536 | 12,904,508 (estimated audience size) |
187 |
| Totals (unduplicated) | $7,587,261 | $9,743,751 | 666 |
[Source DADS Access and Intake Unit, AAA Section]
Medicaid is the federal-state assistance program in which medical bills are paid from federal and state tax funds. It serves low-income individuals of every age. Individuals who are older or who have a disability and need help with daily activities may be able to receive services in their homes, thus relieving some of the burden on family caregivers. Programs vary from state to state, and are run by state and local governments within the established federal guidelines.
Texas' Medicaid program is administered by the Texas Health and Human Services Commission (HHSC), in collaboration with DADS. Within DADS, the Access and Intake Division establishes and oversees the state's service system, including OAA programs and intellectual and developmental disabilities services. DADS regional and local field offices are responsible for determining functional eligibility for Medicaid and programs funded by the Title XX Social Services Block Grant. These field offices contract with providers at the regional level to administer Medicaid programs. Medicaid waiver programs include, but are not limited to, Community- Based Alternatives, Community Living Assistance and Support Services, Deaf-Blind with Multiple Disability Waiver program, Consolidated Waiver Program, Home and Community-Based Services, and Personal Assistance Services. The Medicaid community entitlement programs include Primary Home Care, Community Attendant Services, and Day Activity and Health Services. The DADS Reference Guide provides more detail on the various community programs, both Medicaid and non-Medicaid, that DADS administers. [46]
In addition to OAA-funded and Medicaid services, Texas offers several other complementary programs that round out its continuum of services and supports for individuals with disabilities and older Texans. While several of these programs are institutional in nature, many directly address the needs of those choosing to stay in their home and community settings, and thus positively support those providing informal care. These services include, but are not limited to, Adult Foster Care, Consumer Managed Personal Attendant Services Program, Day Activity and Health Services, Emergency Response Services, Family Care, and In-Home and Family Support.
Despite the ever-widening range of services throughout Texas that provide support to informal caregivers, systemic challenges remain. Caregivers are a demographically diverse group, particularly in a state as varied as Texas. As a part of the process of improving the caregiver support system in Texas, it was determined that these challenges needed to be further explored. The following pages summarize the results from caregiver focus groups held around the state. Caregivers' own insights provide valuable information about these challenges and their effects.
Updated: April 11, 2012