Every month, millions of people worry about how they will pay their rent or mortgage, utilities, phone bill, the food bill, car payment, and insurance, along with any other unexpected expenditures that might come their way.

Almost everyone lives paycheck-to-paycheck, and when the extra responsibility of being a family caregiver for a loved one is added to an already costly equation, you’ve got a situation that stretches way beyond anyone’s financial imagination or reality. It’s taken several years for the financial plight of the family caregiver to be recognized, probably because it was always assumed that health insurance and other coverage would pay for any of the medical expenses and other needs of a loved one, which is certainly far from being true. With over 54 million caregivers in the United States (and counting), their collective voices are echoing louder and louder with the cries of financial anguish and despair. The situation has reached a crisis level, with many family caregivers having to choose between paying the mortgage or paying for their loved one’s life-sustaining medicines, unable to afford both. Family caregivers also run the risk of losing jobs and benefits because of their dedication to a loved one who may be terminally ill, physically challenged, aging, or all three at the same time. Although our government is beginning to recognize the financial crisis among family caregivers with the creation of the National Family Caregiver Support Program and the Older American’s Act, we still haven’t gotten past the beginning stages in providing financial assistance for all family caregivers on a national level. Financial help for caregivers still seems to be primarily up to each individual state and/or community, with monetary decisions based upon what can be afforded in the way of caregiver assistance at that particular time.

On a national level, the enactment of the Older Americans Act Amendments of 2000 established and funded the National Family Caregiver Support Program (NFCSP). The program was created to help relieve the financial hardships from the continual care by family caregivers (of any age) who act as unpaid caregivers for loved ones 60 or older. Last year, the program received a congressional appropriation of $155.2 million (fiscal year 2003), with the funds allocated to states through a congressionally mandated formula based on a proportionate share of the 70+ population. The NFCSP was developed by the Administration on Aging (AoA) of the U.S. Department of Health and Human Services, and was modeled after successful programs in states such as California, New Jersey, Wisconsin and Pennsylvania. Most family caregivers who receive assistance from this program have been providing major care for quite a while, and have received little to no financial support. One of the major improvements brought about from this program is the quickness with which a family caregiver can be placed within its system. In years past, most family caregivers were placed on a very long waiting list for traditional funding. The fact that a loved one had a caregiver was something that actually worked against them, making the care recipient a lower priority for services, because they were being compared to people who did not have a caregiver. With the NFCSP, it is a requirement to have a caregiver in order to receive services through this program, and family caregivers who are providing 24-hour care are considered to be the highest priority.

While the NFCSP tries to find families who are economically or socially needy, having a low income is not an eligibility requirement for receiving available services. There’s also a program that helps grandparents 60 or over who are serving as the primary caregivers for grandchildren or other related children under 18 or who may have mental or physical challenges, and who live in the grandparent’s home. Best of all, there is no charge for any of the services provided to family caregivers of older persons or grandchildren. Through the program, all states who are working in partnership with local area agencies on aging, as well as with faith- and community-service providers, are to offer five direct services that best meet the range of caregivers’ needs, including:

• information to caregivers about available services
• assistance to caregivers in gaining access to supportive services
• individual counseling, help in organizing support groups, and caregiver training to assist caregivers in making decisions and solving problems relating to  their roles
• respite care for family caregivers through the use of companions, homemakers,  home health aides, adult day care, and in-facility care.
• supplemental services, on a limited basis, to help with the care provided  by caregivers, which may include medical supplies such as disposable undergarments or nutritional items

The National Family Caregiver Support Program is available throughout the United States, with some variation in priority for services and types of services offered in different areas. Family caregivers can contact the NFCSP through their local area agency on aging (AAA) or by contacting the Administration on Aging directly at 202-619-0724.

Also available throughout the country is the Temporary Assistance to Needy Families (TANF) program, developed to help provide financial assistance, referred to as a “grant,” for low-income families who have children under 18 living at home; this includes grandparents who are the sole caregivers of grandchildren. The money comes from the federal government, but the states run the program. The states must follow some basic federal rules for TANF, including two rules that could apply to grandparents who are raising grandchildren: adults cannot receive TANF benefits for more than five years (a lifetime limit); and adults who receive TANF benefits must get a job when the state says that they are ready. Depending on what is needed, the grandparents can be "on the grant" if the money received is for their own support. One of the main eligibility requirements for grandparents who are placed on the grant is that they must have a job or do some form of community service within two years of receiving the TANF grant. Be aware that some states may give a shorter window of time in which to obtain employment or perform a community service. Some states don’t require the grandparent to have employment or to do community services if the grandchild is younger than 12 months or if childcare for a grandchild under 6 years old can not be found.

Grandparents can also apply for a "child-only" grant for just the grandchild’s support alone. Most states allow grandparents to switch to a child-only grant, but some states have special rules about making such a change. With a child-only grant there are no work requirements and grandchildren will probably receive benefits for more than 5 years. Some questions family caregivers and grandparents should ask regarding TANF include:

• Is my family eligible?
• Am I, or should I be, "on the grant?"
• Is a "child-only" grant better for my family?
• How do I apply?
• Do the time limits and work requirements apply to my family? Can I get  a waiver?
• Is there a separate state program for grandparent-headed families that does not have time limits and work requirements? If so, how does it work?