The National Family Caregiver Support Program is designed to support informal caregivers -- family, friends and neighbors -- as they carry out their caregiving responsibilities. Through this program, Area Agencies on Aging provide a multifaceted system of support services for informal caregivers of older people and grandparents and other relatives caring for children. This program helps sustain informal caregivers in their efforts to care for older people who have chronic illnesses or disabilities and promotes their ability to remain in their homes and local communities. For grandparents and other relative caregivers of children, the program promotes the retention of these children in a nurturing family environment, instead of placement in foster care.
Background: In the 2000 reauthorization of the Older American’s Act, the National Family Caregiver Support Act was established to address the needs of the growing number of informal caregivers. The new federal program was authorized under Title III, Part E, initially providing New York State with approximately $7.5 million dollars of funding to begin this program at the Area Agency level. On April 6, 2001, the New York State Office for the Aging announced the establishment of the National Family Caregiver Support Program. Since that time, Area Agencies have been providing services to an ever expanding population of caregivers of older people and grandparents/other relatives who are raising children. (AAAs that have the state-funded CRC funding coordinate their state and federal caregiver programs so that, from the caregiver perspective, there is a program consisting of an array of services that are comprehensive, complementary and supplemental in nature. Learn about the CRCs (Caregiver Resource Centers).
AAAs can spend up to 10% of their funds to support grandparents and other relatives who are caring for a child. Local programs that choose to include this program component may include one or more of the service components described below. The care receiver impairment requirements noted below for respite and supplemental services do not apply.
Goals and Objectives
To support informal caregivers so they may continue to carry out their caregiving roles and responsibilities. The program consists of five mandatory service components. While local AAA programs must provide all components, they may use other funds to meet this requirement. They do not have to provide all components with Title III-E funds. As long as the component is available from some source, the requirement is met.
The SERVICE COMPONENTS are:
Information for caregivers about available services;
Assistance for caregivers in gaining access to these services;
Individual Counseling, Support Groups, and Caregiver Training to assist caregivers in the areas of health, nutrition and financial literacy and to help caregivers make decisions and solve problems relating to their caregiving roles;
Respite to temporarily relieve caregivers from their caregiving responsibilities by providing a short-term break;
Supplemental Services to complement care provided by caregivers.
The following is a summary of each service component.
Information for caregivers about available services. Information refers to group service activities designed to inform caregivers of available services. Information on resources and services can be provided by an Area Agency to persons within the community in methods such as articles in newspapers, brochures, public service announcements on radio or television, group presentations and at events such as health fairs. Information includes outreach activities – interventions initiated by the program for the purpose of identifying potential clients and encouraging their use of available services and benefits.
Assistance for caregivers in gaining access to the services. Assistance refers to a service that assists caregivers in obtaining access to the services and resources available within their community. An individual is provided with information on a one-to-one basis about available services and opportunities in the community, assisted in defining problems/needs and capacities, receives direction or guidance relative to those problems and is linked to services and opportunities to meet the problems/needs. Also included in this is follow-up, to the extent possible, that the caregiver receives the service. Both information and assistance and case management when provided to caregivers under III-E are considered a form of Assistance.
Individual counseling, support groups, and caregiver training to assist caregivers in making decisions and solving problems relating to their caregiving roles. Area Agencies are required to provide at least one of the components, but may provide all three.
Counseling, support groups and training refer to a range of individual and/or group services that are intended to assist caregivers in gaining knowledge and/or skills related to their caregiving role. Counseling can take place on an individual basis or in a group setting for caregivers who are involved with the same care receiver.
There are many different types of counseling. Examples include individual or group counseling, mediation resolution, peer counseling, grief counseling. Local programs may develop/implement support groups, as well as facilitate/maintain them. They may be in-person, on-line and/or telephone support groups. Support groups may be designed for anyone in a caregiving role or they may be for specific caregivers, e.g., caregivers caring for someone with a particular type of disease, e.g., Alzheimer’s disease, Parkinson’s disease, or based on the caregiver/care receiver relationship, e.g., spouse, child. They may be educational and/or supportive and sharing, long term or short term. Training programs may be delivered in one session or in a series, the duration may vary from an hour to a full day or longer, and cover numerous topics that can help and support the caregiver in their caregiving capacity, e.g., skills related to assisting care receivers with activities of daily living, legal issues, e.g., power of attorney, living wills, managing difficult behaviors, nutrition, health/wellness, e.g., stress reduction exercises.
Respite care to give caregivers a break and temporarily relieve them from their caregiving responsibilities. Respite care is temporary and provides substitute supports or living arrangements to allow for a brief period of relief or rest for caregivers. It can take the form of in-home respite (e.g., personal care level I or level II, home health aide or supervision/ companion), adult day services (social adult day care or adult day health care) or overnight respite (e.g., in nursing home, adult home, assisted living facility.)
Respite is designed to provide relief to the caregiver, while at the same time providing direct services to the care recipient. Thus it must meet the needs of both the caregiver and the care receiver. To be responsive to the varying needs, circumstances and preferences of caregivers, it is beneficial to have different types of respite available.
In order for the caregiver to be eligible for respite under the program, the care receiver must be frail as defined in the Older Americans Act. This means that the care receiver is unable to perform at least two activities of daily living without substantial human assistance, including verbal reminding, physical cueing or supervision . . . or due to a cognitive or mental impairment, requires substantial supervision because the individual behaves in a manner that poses a serious health or safety hazard to the individual or to another individual. [Sect. 102(26) (A) and (B)]
Supplemental Services to complement the care provided by caregivers. Supplemental services are other services, not listed above, to address the needs of the caregiver. Unlike the other 4 service components, supplemental services has a funding cap – a program may spend no more than 20% of its funding on supplemental services By definition, supplemental services are meant to be flexible enhancements to caregiver support programs. Examples of supplemental services include such services as personal emergency response systems, assistive technology, home modifications, disposable supplies (e.g., incontinence supplies), nutrition services and transportation.
Similar to the requirements of Respite, to be eligible for supplemental services a caregiver must be caring for an older person who is defined as frail under the Older Americans Act. This means that the care receiver is unable to perform at least two activities of daily living without substantial human assistance, including verbal reminding, physical cueing or supervision . . . or due to a cognitive or mental impairment, requires substantial supervision because the individual behaves in a manner that poses a serious health or safety hazard to the individual or to another individual. [Sect. 102(26) (A) and (B).
A caregiver who meets one of the following criteria:
An adult caring for a person who is at least 60* ;
An adult caring for a person with Alzheimer’s disease or related disorders* ;or
A grandparent or other relative who is at least 55 and the primary caregiver for a child not older than 18 or a person with a disability. *In these caregiving situations, there are other requirements that must be met for the caregiver to receive respite or supplemental services. In these situations, the person being cared for must need assistance with at least two of the following activities – eating, dressing, bathing, toileting, mobility, personal hygiene and transferring from bed or chair. For more details on eligibility, see Title III-E Eligibility.