National Family Caregiver Support Program

The National Family Caregiver Support Program (NFCSP) was established in 2000 to provide funding to states to fund a range of supports that assist family and informal caregivers to care for their loved ones at home for as long as possible through the enactment of Part E of the Older Americans Act of 1965, as amended; also known as Title III-E. Caregivers often present with unique needs and preferences for the type of programs and services they desire, which must be considered by Area Agencies on Aging (AAAs) in providing services to family and informal caregivers. Often the focus of aging network services is on the care receiver; however, the intent of the NFCSP is to focus on and support the caregiver, which in turn supports the care receiver.

NYSOFA administers this program through its 59 AAAs. AAAs that accept NFCSP funds from NYSOFA must establish and operate a caregiver support program that: meets the needs of the caregiver and enhances support given to the care receiver; helps the caregiver become a better advocate and more confident in assisting the care receiver with their needs; deters placement in a long-term care facility and promotes continuing care within the home and/or in alternative community settings for seniors for as long as possible, and helps provide support to older relatives that are caregivers for children or individuals with disabilities if desired. When family caregivers are well supported, receivers of their care are able to stay in their homes longer and can have a better quality of life.

The goal of the NFCSP is to support informal caregivers so they may continue to carry out their caregiving roles and responsibilities.

Caregivers who meet one of the following criteria are eligible for NFCSP services:

• Adult family members or other informal caregivers aged 18 and older providing care to individuals 60 years of age or older*;
• Adult family members or other informal caregivers aged 18 and older providing care to individuals of ANY age with Alzheimer’s disease and related disorders*;
• Older relatives (not parents) age 55 and older providing care to children under the age of 18; and
• Older relatives, including parents, age 55 and older providing care to adults ages 18-59 with disabilities.

*In these caregiving situations, there are other requirements that must be met for the caregiver to receive respite care and/or supplemental services. In these situations, the person being cared for must need assistance with at least two of the following Activities of Daily Living (ADLs) – eating, dressing, bathing, toileting, mobility, personal hygiene and/or transferring from bed or chair.

The NFCSP provides the following types of services:

1. Information to caregivers about available services;
2. Assistance (Case Management and Information and Assistance) to caregivers in gaining access to the services;
3. Individual caregiver counseling,
4. Caregiver support groups
5. Caregiver training;
6. Respite care* (in-home and/or out-of-home); and
7. Supplemental services*, on a limited basis.

These services shall be designed to work in conjunction with other state and community-based services to provide a coordinated set of supports to family and informal caregivers.

*Respite care and supplemental services shall only be provided to caregivers of “frail” older adults. “Frail” is defined in the Older Americans Act (OAA) 102(22) as an older adult (60 and older) who is functionally impaired because the person is unable to perform at least 2 ADLs without substantial human assistance, including verbal reminding, physical cueing, or supervision; or an individual who has a cognitive or other mental impairment that requires substantial supervision because the person behaves in a manner that poses a serious health or safety hazard to the person or to another person. This does not apply to Older Relative Caregivers. If they meet the definition of an Older Relative Caregiver, they are eligible for all service types.

The following is a summary of each service:

Caregiver Information (Public)  

A public and media activity that conveys information to caregivers about available services, which can include an in-person interactive presentation to the public conducted; a booth/exhibit at a fair, conference, or other public event; and a radio, TV, or Web site event.

Assistance – Case Management (Caregiver)

Case management means a service provided to a caregiver, at the direction of the caregiver. Case management is provided by an individual who is trained or experienced in the case management skills that are required to deliver the services and coordination. This service is designed to assess the needs of the caregiver and to arrange, coordinate, and monitor an optimum package of services to meet those needs.

Case management includes services and coordination such as a comprehensive assessment of the caregiver (including the physical, psychological, and social needs of the caregiver), as well as development and implementation of a service plan with the caregiver to mobilize the formal and informal resources and services identified in the assessment to meet the needs of the caregiver. This includes coordination of resources and services in the following ways:

• Coordination with any other plans that exist for various formal services;
• Coordination with the information and assistance services provided under the Older Americans Act;
• Coordination and monitoring of formal and informal service delivery, including coordination and monitoring to ensure that services specified in the plan are being provided;
• Periodic reassessment and revision of the status of the caregiver; and
• Advocacy on behalf of the caregiver for needed services or resources (in accordance with the wishes of the caregiver).

The service definition for Case Management (Caregiver) has been modified from the service definition of Case Management for older adults to ensure that the service is provided to the caregiver.

Assistance – Information and Assistance

This is a service that: provides caregivers with current information on opportunities and services available within their communities, including information relating to assistive technology; assesses the problems and capacities of the caregivers; links the caregivers to the opportunities and services that are available; to the maximum extent practicable, ensures that the caregivers receive the services needed and are aware of the opportunities available to the caregivers by establishing adequate follow-up procedures; and serves the entire community of older individuals, particularly:

• Caregivers who are older individuals with greatest social need;
• Older individuals with greatest economic need;
• Older relative caregivers of children with severe disabilities, or individuals with disabilities who have severe disabilities;
• Family caregivers who provide care for individuals with Alzheimer’s disease and related disorders with neurological and organic brain dysfunction; and
• Caregivers of “frail” individuals defined as: unable to perform at least two activities of daily living without substantial human assistance, including verbal reminding, physical cueing, or supervision; and/or has cognitive or other 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.

Individual Caregiver Counseling

A service designed to support caregivers and assist them in their decision-making and problem solving. Counselors are service providers that are degreed and/or credentialed, trained to work with older adults and families and specifically to understand and address the complex physical, behavioral, and emotional problems related to their caregiver roles. This includes counseling to individuals or group sessions.

Caregiver Support Groups

A service that is led by a trained individual, moderator, or professional, as required by state policy, to facilitate caregivers to discuss their common experiences and concerns and develop a mutual support system. Support groups are typically held on a regularly scheduled basis and may be conducted in person, over the telephone, or online. For the purposes of Title III-E funding, caregiver support groups would not include “caregiver education groups,” “peer-to-peer support groups,” or other groups primarily aimed at teaching skills or meeting on an informal basis without a facilitator that possesses training and/or credentials as required by state policy.

Caregiver Training 

A service that provides family caregivers with instruction to improve knowledge and performance of specific skills relating to their caregiving roles and responsibilities. Skills may include activities related to health, nutrition, and financial management; providing personal care; and communicating with health care providers and other family members. Training may include use of evidence-based programs; it may be conducted in-person or on-line and be provided in individual or group settings.

Respite Care

Respite Care services are services that offer temporary, substitute supports or living arrangements for care recipients in order to provide a brief period of relief or rest for caregivers and can be provided in-home or out-of-home.

In-home Respite: A respite service provided in the home of the caregiver or care receiver and allows the caregiver time away to do other activities. During such respite, other activities can occur, which may offer additional support to either the caregiver or care receiver, including homemaker or personal care services.

Out-of-home Respite (day): A respite service provided in settings other than the caregiver/care receiver’s home, including adult day care, senior center or other non-residential setting (in the case of older relatives raising children, day camps), where an overnight stay does not occur that allows the caregiver time away to do other activities.

Out-of-home Respite (overnight): A respite service provided in residential settings such as nursing homes, assisted living facilities, and family type homes (or, in the case of older relatives raising children, summer camps), in which the care receiver resides in the facility (on a temporary basis) for a full 24-hour period of time. The service provides the caregiver with time away to do other activities

Other Respite: A respite service provided using OAA funds in whole or in part, that does not fall into the previously defined respite service categories.

Supplemental Services 

Goods and services provided on a limited basis to complement the care provided by caregivers. Supplemental services may be provided to the caregiver, to the care receiver, or to both. Examples include: assistive technology, durable medical equipment, home modifications, consumable supplies, legal and/or financial consultations, chore services, transportation, etc.

IMPORTANT NOTE: Unlike the other NFCSP service components, supplemental services has a funding cap – a program may spend no more than 20% of its Title III-E funding on supplemental services. Supplemental services are meant to be flexible enhancements to caregiver support programs.