As a nation, we rely very heavily on family caretakers to care for those with disabilities, particularly adults. These caregivers are the front line in our communities and our homes. They not only help with physical needs, such as bathing, dressing, eating, and toilet needs, they also manage the services provided by others, arranging medical and custodial care, coping with bureaucracies that might provide medical and financial benefits, ensuring that medications are purchased and administered, and filling out insurance and other medical forms. They are likely to manage the patient’s overall finances as well. Increasingly, caring for a person with a disability requires computer skills to keep up. This work is physically, mentally, and emotionally exhausting, particularly when it involves caring for those with dementia.

About 3.5 million individuals with intellectual or developmental disabilities live with family caregivers — one quarter are age 60 or older. And the trend is up: in 2010, 27 percent of US adults say they provided unpaid care to an adult in the past year. Three years later, the figure was 36 percent. In economic terms, the value of caregiver support is huge — $470 billion in 2013 — more than the total amount of Medicaid spending nationally.


And who are the caregivers making such a huge contribution? Sixty percent, or 26 million, are women. Caretakers are less likely to be in the workforce and more likely to be in poor health themselves. Half report mental stress when they care for someone with a mental health issue — Alzheimer’s or dementia, or a long-term physical condition. On average, they have been in their caregiving role for four years, with a quarter having provided care for five years or more. Higher-hour caregivers are twice as likely to have been caregivers for ten years or more.

Caregivers come from every age, gender, socioeconomic, and racial or ethnic group. There is remarkably little difference in the degree to which each segment of the population participates in caregiving. Yet each struggle in their own way to do the best for loved ones. Each may need differing support depending on the situation in which they find themselves and their own problems, strengths, and resources. That is why we must make advocacy for such assistance a part of our support. Two pieces of legislation now under consideration in Congress would help develop policies to aid caregivers.

The first such bill is the Recognize, Assist, Include, Support, and Engage (RAISE) Family Caregivers Act. It has already passed the Senate unanimously. It seeks to develop a National Caregiving Strategy under the leadership of the Secretary of Health and Human Services with an advisory council made up of people with disabilities, older adults, family caregivers, direct support professionals, and government officials. The bill spells out the needs to be addressed, including workplace policies, respite services, training and support for caregivers, and information and referral services. The new legislation would allow18 months for development of the initial strategy, with annual updates. The bill also calls on the department to collect and publish a wide variety of data on caregiving.

The second bill, the Lifespan Respite Care Reauthorization Act, would extend and increase funding for respite services for caregivers of all individuals with disabilities, including disabilities acquired later in life. Respite care provides a temporary break for caregivers from their caregiving responsibilities. Congress currently appropriates $3.36 million through existing law that allows states to provide a wide variety of respite services, including in the home and at a respite care center. The new bill would increase funding to $15 million per year for four years.

February is Jewish Disability Awareness Month, intended to focus the attention of the Jewish community on the needs of those among us who experience physical and mental challenges. But this is a problem we all share. There is no surer measure of the morality of a society than the degree to which it cares for those with disabilities, be they disabled from birth, by war, by accident, or by disease. Adequate laws and funding are key to our commitment and our promise to those who need our help. We must advocate on behalf of those who do the work of care, as well as in aid of those who need care, and both the RAISE Act and the Lifespan Respite Care Reauthorization Act must be high on our agenda of repairing the world and creating a humane and just society.

Kaufman is the chief executive officer of the National Council of Jewish Women, a grassroots organization inspired by Jewish values that strives to advance social and economic justice for women, children and families.