Ev ery day, millions of Americans face a health care crisis at home. They’re providing around-the-clock care for an ailing parent, spouse, or other relative, often while running a family and holding down an outside job. As the baby boomer generation gets grayer, and pressure to reduce medical spending mounts, more people are joining the ranks of these de facto health care providers. They deserve legal standing.
A 2015 AARP survey of Massachusetts registered voters age 45 and older found a majority have, or were, providing care for a relative who is "ill, frail, elderly, or who has a disability." AARP has estimated the value of these unpaid services at $11.6 billion annually in Massachusetts alone.
While family caregivers can turn to various state and national organizations for assistance and emotional support, more comprehensive action is needed on the state and federal levels. Attention at a policymaking level would bring order to a stopgap, sometimes chaotic, system that robs caregivers of dignity all too easily. A bill under consideration in the Massachusetts Legislature would allow a patient to name a family caregiver — a designation that would help legitimize the role family members play in the health care system. Under the law, patients could not be discharged from a hospital without their caregiver being notified. The bill builds in important safeguards to prevent hospitals from discharging patients without sufficient attention to what comes next: Hospitals would be required to offer detailed instructions on how to perform such tasks as administering drugs and changing bandages. Called the Caregiver Advise, Record, Enable Act, or CARE, it mirrors bills that have been passed in 18 other states. "It's a big step in getting consistency across the board," said state Representative Chris Walsh, the legislation's sponsor.
These long-overdue steps could also prevent readmissions, which are all too common for elderly patients. "Hospital discharge policies really need to come into the modern age," said John Schall, chief executive of the nonprofit Caregiver Action Network, based in Washington, D.C. "So many medical errors occur at that point."
Another Massachusetts caregiver-related bill would build in essential workplace protections by prohibiting employers from discriminating against workers who are caring for a relative. And another proposal breaks new ground by recognizing the burden on spouses by offering a modest weekly stipend for those caring for patients covered by MassHealth — the state insurance plan for low-income and disabled residents. Other family members — including children and grandchildren — as well as friends, already are eligible for caregiver payments, but spouses are unfairly excluded. The spouse of a patient being treated at home often "has to make some real tough choices like, 'Do I cut back on work?' " noted Mike Festa, director of AARP Massachusetts, which is one of many state groups supporting the legislation.
In Washington, several efforts are underway to ease the financial burden on family caregivers. New York congresswoman Nita Lowey, for instance, is pushing a bill that would offer a Social Security credit to anyone who has to quit a job or work fewer hours to take care of a family member. In introducing the legislation, Lowey cited an astounding figure showing that the country's 65 million unpaid caregivers lose an average of $324,000 in pay and benefits over a lifetime. Democratic presidential candidate Hillary Clinton has made family caregiving a part of her campaign platform — she also backs a Social Security credit for family caregivers, as well as a tax credit of up to $6,000 to offset expenses.
Together, these changes would make a significant difference in the lives of caregivers, and the family members who depend on them. Sooner or later, as a caregiver or patient, it's an issue most of us will take personally.