Rather than capping families’ ability to give care, Medicaid should let ring the freedom to do what we ought.
Rather than capping families’ ability to give care, Medicaid should let ring the freedom to do what we ought.
S aint John Paul II called freedom “the right to do what we ought.” July 4 is right around the corner, and in Philadelphia, where American liberty was born, a new fight is taking place. A family seeks the freedom to take care of their beloved son and brother.
Philadelphian Mohamad Alsyrawan is blessed. He is a nonverbal man with autism, Down syndrome, and other disabilities, and Medicaid authorizes him to receive 19 hours of funded personal care a day. He also lives with a lot of love. Much of his care is provided by his mother and sister. They help him bathe and pray. His mother cares for him from six every morning until five every afternoon. Then his sister takes over, from ten at night until the morning shift begins. Without the love of his mother and sister, Mohamad can become very anxious — shutting himself inside the bathroom and even picking at his forehead until he bleeds. But thanks to his mother and sister, Mohamad enjoys a life in the community, where he likes swimming and taking walks.
Mohamad’s mother and sister are inspired by their religion. Devout Muslims, they believe that intimate care should be provided by close relatives. They are willing to accept help, including from non-Muslims, but believe that, because they are able to “care for and protect” Mohamad, they “must do so.”
Pennsylvania Medicaid thinks Mohamad’s care is too, well, personal. It caps the number of hours that relatives and legal guardians can be paid for providing personal care. Mohamad’s mother and sister can be paid for no more than 40 hours a week each or 60 hours between the two of them. Mohamad’s mother brought a lawsuit challenging this, but Pennsylvania’s Commonwealth Court rejected it.
Pennsylvania is no outlier. In much of the country, even people with disabilities who direct their own personal care are not allowed to pay their legally responsible relatives. Shockingly, Pennsylvania’s policy is permissive compared with the rest of the country. Only twelve states permit a relative to be paid for personal care at all, and half of them adopted that policy only during the pandemic and are now reversing it. Having a loving parent, spouse, sibling, or child willing to do dirty work is not enough: Families must allow strangers into the privacy of their lives or forgo public money.
This is not because of budgetary constraints. Medicaid is going to fund caregiving: The question is only whether it should discriminate against family members for the benefit of outside providers. As discussed below, letting families provide the same amount of authorized care can save taxpayers money and result in better outcomes. Additionally, while fraud is a legitimate concern for any public grant, states have decades of experience relying on counselors to ensure that families provide honest and effective service.
Politics aside, the family-caregiving caps are unjust from the perspective of Catholic social teaching. Honor your parents, say the Ten Commandments. Psalm 71 pleads, “Do not cast me off in the time of old age; forsake me not when my strength is spent.” The Book of Sirach directs us to “help your father in his old age, and do not grieve him as long as he lives; even if he is lacking in understanding, show him forbearance; in all your strength do not despise him.” The Catechism of the Catholic Church even describes the family as taking precedence over public service providers. Existing “prior to any recognition by public authority,” the family “is the natural environment for initiating a human being into solidarity and communal responsibilities,” and it “necessarily has manifold responsibilities, rights, and duties.” Those — like Mohamad’s mother and sister who “care for their parents or brothers and sisters,” or the Amish who once brought a lawsuit so they could care for their own instead of relying on Social Security — “contribute greatly to the good of the human family.”
Family caregiving is important to society. Pope Francis condemns the “throwaway culture” that abandons the least of our brothers and sisters to others. One of the worst aspects of this culture is how we arrange care for elderly people and those with disabilities, as theologian Charles Camosy has shown. Moving care from the family setting into anonymized ones exacerbates loneliness.
To be sure, care provided at home rather than in institutional settings, even if by outsiders, is often better than that given in facilities. Half of all nursing-home patients have dementia, which loneliness can worsen. Poorly paid, poorly trained staff often contend with impossible burdens. A disabled friend of mine in his thirties lives in a nursing home and regularly complains that no one comes to his aid when he needs to use the bathroom. Camosy details how corporate nursing-home bureaucrats even instruct staff that to fatally dehydrate residents is “a good thing.” Long-standing problems escalated during the Covid-19 pandemic when nursing homes became “dumping grounds” for infected patients and nurses. Not to mention, nursing homes compete with the fast-food industry for workers — and McDonald’s often pays better.
Community-based care is preferable to this, and many families responded to the pandemic by trying to bring their loved ones home. Which, unsurprisingly, is exactly where most Americans want to be. Outside caregivers have helped many people, including the Alsyrawan family, achieve that outcome. However, there are reasons why families often want to supply care themselves. For instance, Mohamad’s mother is concerned about his safety, as he is nonverbal. She has seen “how staff has made disabled people angry and calmed them with medication instead of love and care.” As Richard W. Garnett writes, where a loving family is ready, able, and willing, it often provides the best care for a vulnerable person.
However, giving up outside work remains difficult for many working-class and middle-class families. Why are many state Medicaid programs capping pay for care provided by family members? Family caregiving should help public budgets. Pennsylvania lifts the cap on family-caregiver pay for up to 90 days whenever “there is an emergency or an unplanned departure of a regularly scheduled worker.” During the Covid-19 pandemic, it suspended the cap altogether. An AARP study finds that Medicaid can fund community-based care for three people at the cost of one nursing home residency. For every person who returned to the community from a nursing home, the government saved an average of $22,000. Overhead is the reason: “By funding care at home, the government can avoid many . . . costs associated with nursing homes,” Camosy writes, including “general administration, HR, cleaning, massive amounts of laundry, utilities, kitchen staff, and more.”
The savings do not come at the price of worse service. Even Americans with the greatest need are especially likely to benefit from caregiving provided in their communities. According to government-sponsored research, moving people out of institutions yields widespread, and lasting, improvements in their quality of life and contributions to their communities. Paying family caregivers to provide care has been shown to result in fewer infections, bedsores, hospitalizations, emergency-room visits, and health-care costs. Religion and the best modern social science point in the same direction here: For many, family caregiving is best.
Family-caregiving caps cannot be blamed on partisan politics, either. Democrats and social-justice advocates generally favor community- and home-based care. So do key conservative constituencies. Pro-life and pro-family groups have ample reason to support family caregiving, especially now that conservatives are increasingly concerned about the dangers of individualism. Older Americans feel those concerns most acutely. No one wants to be “pulled out of one’s home and relationships and thrust into an unfamiliar institution full of strangers. Staying at home means home-cooked meals. It means seeing children, grandchildren, great-grandchildren, and other family members far more often. It means familiar surroundings and comfort.”
Part of the reason why state Medicaid programs limit family caregiving is plain old bureaucratic stubbornness. North Carolina quadriplegic Alexis Ratcliff spent years living at her grandfather’s home, where Medicaid paid for her to receive around-the-clock care. She returned to living at a hospital. Alexis just wants to move back into the community, but her Medicaid agency has not helped her achieve independence. She’s been admitted to attend Salem College on a full academic scholarship, but the day after the hospital threw her a party for her 18th birthday, it sued her for trespass in an effort to force her into a nursing home. Sometimes, bureaucracy makes things difficult for no apparent reason.
The strongest opposition to family caregiving comes from vested corporate interests. Elder-care conglomerates stand to lose much in a shift toward families and away from nursing homes and private caregivers. these powerful corporations “will fight off change in favor of the status quo,” Camosy warns.
How do we fight back? The Vatican recently said that combating the throwaway culture “involves taking responsibility for the present with its situations of utter marginalization and anguish.” The struggle for human dignity requires “intense efforts.” A few months after Independence Day this year, Americans will have the chance to commit to those efforts at their polling places. In the meantime, voters should urge candidates and both presidential campaigns to commit to ending the Medicaid caps. We should make family caregiving freedom one of our political demands.
Pope Francis has called women like Mohamad’s mother and sister “a bastion of life in our cities.” Thank God for such women (and men, too!). Over half of Americans will someday find ourselves like Saint Peter, with someone else dressing us. But will they, too, force us to go where we “do not want to”? That’s up to Medicaid. Rather than capping families’ ability to give care, it should let ring the freedom to do what we ought.