Family Caregiver Support Program (FCSP) Summary of Community Services
By: Amy Blackburn, Msg
Tags: Aging In Place, Long Term Care, Respite, Caregivers, Caregiver Support

To reiterate the purpose of ongoing family caregiver support services, the goal is to monitor and encourage your self-care so that you can continue providing the best care for your loved one at home. Family Caregiver Support Programs (FCSP) provide one-on-one consultation from a case manager, who is typically a gerontologist or social worker. The organizations that have FCSP will facilitate caregiver support groups and provide education and training for caregivers, the community, and professionals. And as funding permits, FCSP provides respite and supplemental services. If family caregivers call these centers for information and referral and do not want ongoing, long-term support services, it can be as simple as that. But family caregivers often do not realize how these support services can help until they start using them. Sometimes it takes a little coaching and educating on the part of the professional case manager, so it’s a good idea for the family to be open to receiving guidance.

At centers where FCSP is provided, when a primary family caregiver wants that ongoing support, they will be assigned a case manager, who will complete an assessment with the family caregiver over the phone or during a home visit. If the assessment is done over the phone, a home visit is scheduled in the future, especially if respite or supplemental services might be needed. Those supplemental services could include home modifications such as grab bars or a small wheelchair ramp; transportation vouchers; nutritional supplements; emergency purchase of groceries, paying utilities, purchasing a refrigerator, a new bed, or durable medical equipment (DME). During the home visit, the case manager will assess the situation and overall caregiver stress, needs, goals, and a Care Plan is developed. That Care Plan is discussed with the family caregiver who contributes to its development by figuring out issues or concerns to be addressed immediately or to be monitored as needed.

Funding for Caregiver Support Services

When FCSP pays for respite services such as in-home care or adult day care or if they pay for those supplemental services mentioned, the process will always take some time. It takes time for the government funding to be received, for the local organization to create the accounts, and for case managers (CMs) to receive the “green light” to start implementing services. Many case managers are handling 100–200 caregiver clients, and only a certain number of home visits can be scheduled in one month, so implementation of services takes time as well. The scheduling takes time, caregiver clients cancel, CMs might need to reschedule, paperwork needs to be signed during the home visit (or signed later and mailed in), and all signed documents need to be processed before any services are covered. Part of that processing is contacting the vendor companies and the CM ordering and coordinating the services that the client will receive. There is a window of time that CMs can implement services for family caregiver clients, which is much shorter than a full fiscal year (closer to six or seven months). Your CM is there to help and moving as fast as the system will allow, so be patient with what is being provided. In any social services organization, especially those that operate as nonprofit organizations that are mostly grant-funded, your social services consultant or CM is not getting paid as much as they should because that money is going to you. Be mindful of that if you feel the desire to complain to the powers that be.

One-on-One Consultation

As far as the ongoing one-on-one consultation, typically the CM will try to contact the client once a month via phone or email to check-in and see how the family caregiver is doing. The family caregiver client can contact that CM for consultation anytime regarding resources or education or to vent about stressful situations related to their caregiver journey. Sometimes the CM will refer the client to counseling services if depression or stress is becoming overwhelming. Also, the caregiver support services organization will make contact through resource newsletters, educational topics, or notifications about upcoming events. Sometimes this is all a caregiver needs or wants as far as contact and does not need to talk to the assigned CM until an emergency or crisis happens, and that is okay. It is still good for the family caregiver client to check in just to confirm everything is fine. You never know, there could be extra money available that the family caregiver can take advantage of before the fiscal year ends!

The one-on-one consultation is also when the CM works with the family caregiver in developing S.M.A.R.T goals in the Care Plan and the CM can provide as much or as little encouragement and monitoring as the family caregiver needs. As self-care S.M.A.R.T goals are accomplished, the Care Plan can be updated monthly as new goals are developed and a new dimension of wellness becomes the focus. CMs devote time daily to family caregiver clients, so it is advantageous for caregivers to seek that support and guidance from them to help during their caregiver journey.

Family Meetings

Another benefit to having an assigned CM is for family meetings. If you are the primary family caregiver and everyone else in your family thinks you have it handled, and you do not (or, it is just too stressful), a family meeting can encourage them to help. The CM facilitates the meeting, provides an agenda, will start with introductions, will encourage the primary family caregiver to talk about the daily caregiver tasks; and there might be discussion about the emotional and physical burden associated with those tasks. Then the CM might ask the other family members about the indirect or direct care and support they are providing. There might be education provided on the progression of dementia, what to expect, and how more family assistance will be needed. The family meeting would close with a discussion on solutions and how everyone could plan to contribute. Usually, the primary family caregiver is very grateful for the outcome of these meetings and they have a long-term beneficial impact for the care receiver as well as the entire family.

Caregiver Support Groups

The CM or clinical services professional is the one who facilitates caregiver support groups. The dynamic of these groups varies, and each group is driven and developed by the participants. Family caregivers can vent and talk about things they cannot talk to anyone else about — such as incontinence care and the best supplies to use. Other caregivers can provide tips and resources that the CMs might not even know about. Some of the participants have been caregivers for years and have become experts. The caregiver support groups could be dispersed throughout different cities in the county, so that family caregivers can have access to them locally; and when they receive resources or advice from other caregivers in the group, the nearby resources are helpful to specific needs or certain situations. Some caregiver support groups enjoy receiving educational resources which the facilitators can provide as needed. If a family caregiver attends a group and does not like it, they should try another support group. Research has shown that caregiver support groups can be one of the most beneficial programs for the caregiver, and it might just take finding the right fit.

Community Education and Caregiver Training

Community education and evidence-based training is also provided for family caregivers, as well as anyone in the community who might be interested. Some of these presentations are open to anyone and others are only for family caregiver clients who have completed an assessment and are receiving ongoing caregiver support services through a funded organization. CMs, who are gerontologists or social workers (typically) will develop and teach these presentations on various topics such as caregiver safety and fall prevention, self-care for caregivers, adjusting to relationship and role changes, exercise and eating healthy, coordinating care and communicating with doctors, and placing your loved one into assisted living. CMs are also trained and certified to facilitate evidence-based training for family caregivers, which might include tools to manage stress, managing chronic conditions, or fall prevention.

Respite

Remember, respite is meant as a temporary break for the family caregiver, so it is not considered long-term care. If the hours are spread throughout the year, it turns out to be a relief for one or two full days each month — or four-hour increments every week or two. Family caregivers are usually very grateful for this service and find that their health and well-being improve greatly when they utilize respite.

As shown, there are many benefits to a family caregiver participating in FCSP, which is usually facilitated by various local nonprofits. Most caregivers who become clients are amazed at all that is offered. Some who have been family caregivers for years and never heard of these caregiver support services that are available wish they had known about this type of help sooner. It is important to get the word out so that family caregivers take advantage of these free services that allow them to find relief from that caregiver stress which can lead to burnout. Many professionals from other organizations end up referring clients or patients to centers providing family caregiver support services; but not enough of them know about FCSP or how it works. Caregiver support centers that have FCSP will usually provide in-service training for human resources at private companies, hospitals, doctor’s offices, skilled nursing, nonprofit organizations, disease-specific organizations, and anyone who might encounter family caregivers.

When professionals from other organizations do refer family caregivers, the best way to refer is to clearly explain the purpose and benefits of FCSP and provide the patient or client the brochure with the phone number to call directly. Fax referrals are not often effective because the patient or client sometimes does not call back after attempted contacts from the caregiver support center. It would be better if the professional provided the patient or client with the information they need and make a follow-up call to see if they have contacted the center; there might need to be additional explanation about FCSP and how it will benefit the caregiver. When family caregivers are proactive, that is when they will commit to the intake, assessment, and being open to how the support services will help. And caregivers will begin to realize the importance of self-care and being healthy so they can continue to commit to providing the best care possible for their loved ones.