Many of the nation’s 40 million family caregivers are caught in a bind made worse by state policies requiring them to work a number of hours in paid jobs every month to retain the insurance coverage provided by Medicaid, called Medi-Cal in California. They simply cannot take time away from their caregiving duties to do that. In fact, the great majority of people under 65 who are enrolled in Medicaid who are not working cite caregiving duties as the reason.
The result is a double injury: Their own health suffers as they’re forced to soldier on without insurance, and the quality of care they can provide to their loved ones also takes a hit, often forcing a move to a nursing facility.
The problem is likely to get worse nationwide before showing any signs of getting better. The Trump Administration is currently encouraging states to adopt work requirements in their Medicaid mandates. And in a mean-spirited twist, the policy applies disproportionately to people who are older, low-income, women, and people of color — all of whom are most likely to bear the burden of family caregiving.
A Closer Look at Family Caregivers
The definition of family caregiver, for both policy and practical reasons, has changed over the years to reflect the “newer normal” of smaller-sized families and to include families of choice rather than strict biological relatives. By many lights, it now broadly includes “any relative, partner, friend or neighbor who has a significant personal relationship with, and who provides a broad range of assistance for, an older person or an adult with a chronic, disabling, or serious health condition.”
Their duties include everything from the administrative — paying bills and arranging transportation; to the intimate — helping with bathing and dressing and providing emotional support; to the pseudo-medical — managing medications, establishing care routines, communicating with healthcare providers, and advocating for fitting care. Many of these tasks and duties used to be performed by trained professionals, but escalating costs of such work along with the entrenched and growing desire of seniors to age at home means that family members have had to step up and fill in.
Family caregivers now provide the most essential and valuable help to adults with limitations — an estimated 37 billion hours valued at more than $470 billion. And the National Alliance for Caregiving, together with the AARP Policy Institute, recently released additional statistics, many of them surprising, that paint a fuller picture of today’s family caregivers:
- 60% are women; 40% are men;
- 24% are Millennials;
- 24% have provided care for more than five years;
- 22% care for a person who has dementia; and
- 47% provide care for a person who is 75 or older.
Another number bandied about is that a majority of family caregivers — more than 60% — are employed in paying jobs. But that bald number is misleading. A deeper dig shows most work less than part-time, or an average of 34.7 hours weekly, in low-paying jobs that come without benefits such as paid vacations, paid family leave, or telecommuting options.
And something has to give. Most who do work say they have had to make some accommodation, such as cutting back on their hours or taking a leave of absence; others say they have received a warning about performance or attendance because of their caregiving duties.
Medicaid is a vital safety net for many seniors and their family caregivers. The largest public payer for long-term support services, many families rely on Medicaid funds to cover home help to supplement care there. And for caregivers who must reduce their work hours or quit their paying jobs, it’s essential.
A Closer Look at State Requirements
Despite being a literal lifesaver for many family caregivers, there is a move afoot, heavily pushed by the current administration, to get states to require people to toil a certain number of hours to qualify for an exemption allowing them to maintain coverage. A total of 17 states are either implementing or have a written plan to impose such requirements as a condition of eligibility. They include: Alabama, Arizona, Arkansas, Indiana, Kansas, Kentucky, Maine, Michigan, Mississippi, New Hampshire, Ohio, Oklahoma, South Dakota, Tennessee, Utah, Virginia, and Wisconsin.
While all states do provide some exemptions for family caregivers, much confusion surrounds them. State mandates also vary confusingly in:
- the number of work hours required;
- whether caregiving hours can be counted as “work” — most do not; and
- how a caregiver is defined — some are limited to dependents, relatives, or incapacitated people
In addition, the new requirements also mandate that caregivers track and report their hours — adding another burden to an already burdensome situation. Many family caregivers are unaware of the reporting requirements or simply find them too difficult or confusing to follow.
A Closer Look at the Harm
The Kaiser Family Foundation recently conducted a study of Arkansas, which on June 1, 2018 became the first state to impose Medicaid work requirements and the only state in which it is currently fully implemented, and found that more than 4,300 people lost coverage because of the requirements, and an additional 5,000 were at risk of losing it. Many former recipients did not understand or know about the requirement. Many did not have access to the Internet to report their compliance as required. Many did not have transportation needed to get to paid work outside the home.
Justice in Aging, a national organization focused on securing access to affordable healthcare and to the courts for low-income seniors, recently published a factsheet, “The Impact of Medicaid Work Requirements on Family Caregivers and Older Adults,” that contains an updated list of states that are considering or have already implemented work requirements. It also sets out the varying exemptions for family caregivers.
If you live in a state that has adopted work requirements for Medicaid coverage, make the effort to find out the specifics. If your state has not yet implemented the requirement, consider lobbying local legislators to think again about the hardships it would likely impose.