The work of caregiving confers enormous benefits on Maine’s communities, socially and economically. It’s time we stopped looking at the shortcomings of our “care economy” as a crisis and started looking at its reform as a major opportunity for the state.

Heather Johnson assists her 5-year-old daughter Adaline, who has a rare genetic disorder and needs constant care, at their home in Searsport. Legislation advancing at the State House could provide a financial lifeline to parents who are caregivers to children with special needs. Sofia Aldinio/Staff Photographer

If you read last Sunday’s paper, you read about Heather Johnson, the mother of Adaline Johnson, a Searsport 5-year-old with a rare genetic disorder who requires constant care. The Johnsons qualify for MaineCare coverage for home health care suitable for Adaline’s needs, but such is the strain on the market in Maine — as across the U.S. — that no such care can be found.

The result? Heather Johnson cannot work outside the home. Under MaineCare rules, she can’t be paid for the work she does in the home, either.

The Legislature’s Health and Human Services Committee’s unanimous support of a bill that would allow parents like Johnson to be paid for the full-time care of their children is testament to the good sense this proposal makes. The federal government covers about 73% of MaineCare costs and the state pays for about 27%.

“It’s more than about the money,” Johnson said. “It’s about being appreciated, and valued for what you do.”

And that’s exactly right. Existing MaineCare rules, and many other policies like them, both fail to reflect present-day labor market realities and ignore the tireless, essential work that family caregivers do every day.


According to the National Academy for State Health Policy, family caregivers provide about 1.5 billion hours of health care to about 5.6 million kids with special needs in the U.S. each year. Were this care provided by home health aides, the estimated annual cost would run to tens of billions of dollars.

Eligibility for Medicaid coverage (called MaineCare in Maine) — established with clarity about entitlement to outside help — is completely meaningless if there’s nothing for that coverage to pay for.

Maine stands to benefit from more of this pragmatism in policymaking at the state level. When it comes to respect for the work of caregivers of all varieties, there’s an enormous amount of ground to make up.

According to a 2021 report, the average median annual income for home care workers is about $18,000. Until that changes, there is no hope for the market to meet steadily increasing demand for care, forcing families to step up and figure things out for themselves, hurting badly needed labor force participation and the economy as a whole.

Across the U.S., millions of at-home caregivers are being kept out of work. As a recent news report referencing Gov. Mills’ $5.1 million pilot grant program for family caregivers noted, this kept-out-of-work population is more accurately described as “chronically overworked.”

Even the regular use of the term “help” seems to suggest that the work of caregiving, which is often complex and around-the-clock in nature — isn’t work enough. Not until the chilling grip of the COVID-19 pandemic did views on family caregiving, sometimes referred to as “informal caregiving,” begin to change and humanize. Across the country, states took unprecedented steps to alleviate financial pressure on family caregivers.


The Biden administration has been vocal in its support of this shift, encouraging state-run Medicaid programs to pay parents to be caregivers for children with special needs and easing rules to make it possible for states to make changes and take unique approaches to family caregivers.

But there’s mounting evidence nationally that the shift may not be long lasting; a “COVID-era” measure in Virginia, for example, paid parents to provide care for disabled children and spouses to care for disabled husbands or wives. Virginia will end those waivers this fall.

The bill is now coming due for successive decades of underpaying and undervaluing care work of all kinds — and it is alarming.

It’s why we must take steps to correct the pay of all child care workers by trade, enabling access to affordable, quality child care and giving families a chance, something this editorial board wrote in support of last week.

It’s why there’s a case currently being made in Maine for a program of paid family and medical leave, allowing workers to take time off for caregiving without risking their jobs. Even individuals and groups opposed to the proposal’s scope or its specific formulae have been ready and willing to voice their support for the spirit of such a program.

And that’s telling. In each case, the need — and the value of valuing care — is next to impossible to ignore.

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