Respite services, an important component of the home and community-based long-term care service-delivery system, provide informal caregivers with a temporary break from their caregiving responsibilities and associated stresses. Caregiving is a responsibility most take on without hesitation. However, informal caregivers often face financial, physical, and emotional burdens which have an impact on their families, social lives, and careers. With the aging of the baby boomers, there will be an increasing number of older people due to the size of this cohort. As the boomers become elderly, there is an increased likelihood that they will need support in everyday living tasks. As a result, the demands placed on informal caregivers will continue and likely will increase.
Informal caregivers play a critical role in the long-term care system; in fact, the system cannot function without them. Thus, it is crucial that caregivers are supported in their caregiving responsibilities. Respite services temporarily relieve caregivers of their caregiving responsibilities by providing a short-term break, allowing the caregiver to devote time to address other needs. Respite services include home care (e.g., personal care levels I & II, companionship/supervision), community-based services (e.g., social adult day services, adult day health care), and facility-based overnight care (e.g., in a nursing home, adult home). Respite services assist caregivers in maintaining their loved ones at home for as long as possible and delays or forestalls nursing home placement, which often results in a much higher cost both to the family and the State Medicaid Program.
Respite services in New York State are provided through a variety of funding streams. There are 10 community-based respite programs that are included in the State Budget, for which the New York State Office for the Aging (NYSOFA) has administrative responsibility.
Area Agencies on Aging (AAA) provide respite services throughout the state through a variety of federal and state-funded programs. Two primary programs are the New York Elder Caregiver Support Program funded under Title III-E of the Older Americans Act, and the state-funded Expanded In-Home Services for the Elderly Program (EISEP).
The merits of the respite program speak for themselves, for example:
- Back in February of 2010, the concerned family members called their local office for the aging about services for their mother, Rose, who is 96 years old. Rose began having some serious health issues, was hospitalized for a short time, and sent home. Her family thought it was time for her to make a "move" but Rose refused to go into an assisted living or nursing home. She wanted to stay in the home that she has lived in and raised her family in, for over 60 years. Rose's sons & daughter-in-laws decided that with their help as well as some services through the office for the aging, it might be possible. To get Rose comfortable with aide services, the family applied for Respite funding. This made it possible for them to hire someone that could come in a few times a week and help Rose with some of her activities of daily living. Once Rose got used to having someone assist her, she agreed to accept a little more help through the EISEP program. She now accepts and benefits from home-delivered meals and a personal response unit (lifeline) in addition to EISEP twice a week for a total of four (4) hours and some respite when/if family members are going to be away for any extended period. Rose is still going strong & her family still worries a little but they are much more comfortable knowing that mom receives services & therefore able to continue living at home.
- Sue and her husband, Bill, first contacted the Alzheimer's Association, Western New York Chapter, through our
helpline services. Sue was mailed information on the various services that we provide and encouraged by the care
consultant to consider Early Stage programming. At the time Bill was considered to be in the early stages of the
disease process and was considered appropriate to participate in our Early Stage programs. The couple regularly
attended these programs as well as a various Early Stage Couples support groups and education classes. In the past few months Bill has progressed into the middle stages of the disease process. After a care consultant met with Sue to discuss Bill's progression it was determined that the couple's needs would be better met participating in our
Respite program. Bill began attending our Social Group Respite program in February 2011. In order to make the
transition smooth we initially began calling Bill a "volunteer" during the program.
At the respite program Bill is able to socialize with other individual's with dementia. He also is able to take pride in thinking that he is providing a volunteer service. Sue also benefits from the program from receiving a 3 hour break from providing caregiver responsibilities. The couple enjoyed the program so much that they decided to also begin utilizing in-home respite services. The couple has been paired with a set of volunteers that go into the home every other week for 2-4 hour sessions. During this time the volunteers play music for Bill and they reminisce about classic songs, movies and life events. This couple is a wonderful representation of how individuals diagnosed with the disease and their care partner can benefit from respite services. By contacting the Alzheimerï¿½s Association this couple was able to be given education on the disease process and linked with programs that met Bill's needs as he progresses through the disease. As a result Sue has been able to build a support system of other care partners, which she met during her participation in our programs. Bill also is benefiting from his experience by being able to maintain a certain level of independence by remaining social and active.