Governor Maura Healey lamented the “crisis-level” shortages in MassHealth’s Personal Care Attendant Program earlier this year. Fixing it, she pledged, would crown “the top of the list.” Okay, here’s how.
The program intends to meet the needs of temporarily or chronically disabled people in activities of daily living. Since 1974, the program has promised to usher health aides into the homes of Massachusetts residents for assistance with a range of needs, from bathing and eating to grooming, toileting, and house cleaning.
The concept reflects a policy consensus that sustaining disabled people in their homes beats the alternative of institutional care. The ideal of independence informs the program’s design as well. The consumer of the program’s allowance doubles as an employer, the party who bears the right to hire and fire personal care attendants.
In practice, the hybrid model cheats families like mine. Caring for my 11-year-old son Misha, a non-speaking autistic bereft of the rudiments of self-preservation, entails near constant assistance with virtually every area of daily living. Yet I have had no more than intermittent success in finding PCAs over the five years that we have been in the program. We control the disbursement of medically necessary public funds whose effectual power depends on the market’s private supply of labor. Absent an attendant to hire, the program is moot.
Applicants must navigate a bureaucracy devised to discourage all but the most dogged and capable in the first place. MassHealth delegates eligibility evaluations not to its regular health plans, but to a parallel apparatus of personal care management agencies. The agencies dispatch nurses to perform in-home evaluations. The evaluations are returned to the agencies, passed back to MassHealth, and then sent over to Optum, a subsidiary of one of the largest insurance companies in the world. There, the prior authorization department quantifies the nurses’ evaluations in task hours that divide into 15-minute increments.
Consumers who manage to find personal attendants to hire are required to engage a fiscal intermediary upon which the state has conferred sole power to process employment verifications and time sheets, to withhold taxes, and to issue payments, at least when its operations aren’t interrupted by systemwide outages. Survivors of this gantlet then may expect to see their personal care attendant quit. Up to 60 percent of the workforce resigns annually.
On April 1, pursuant to a collective bargaining agreement, starting pay rose to $18 per hour — 29 cents higher than last year’s rate. Negotiations for the next agreement have begun in earnest. The Personal Care Attendant Workforce Council, the state agency responsible for overseeing the labor market, has formed a task force that’s looking to tap cheap labor from refugees and immigrants.
More than 35,000 adults and people with disabilities are enrolled in the state’s PCA program. Nobody knows how many of them aren’t receiving the assistance they need to avoid institutionalization. A May 2 meeting of the Workforce Council communicated no urgency in finding out. Four of its nine members didn’t show up, leaving the meeting with the bare minimum for a quorum. I asked Undersecretary of Health Kiame Mahaniah during the meeting how the council could determine recruiting targets if it doesn’t know how many workers are required. “That would be interesting data to have,” he replied.
A tweak in policy would help. MassHealth allows consumers to hire friends, adult children, siblings, nephews, nieces, or adult grandchildren as paid providers of personal care services. But MassHealth crops parents like me out of the picture, expressly forbidding us (legally responsible relatives) from receiving remuneration for rendering assistance.
Ending the disqualification would expand the PCA labor pool, improve continuity and quality, and reduce poverty. Many parents have been knocked out of the regular workforce and confined to our homes by our children’s disabilities. When I left my job and became a full-time, single father solely responsible for my son’s care, my income dropped by more than $100,000 in the first year and plunged our family well below the poverty line. Seven years later, that’s where I remain, caught between the irreconcilable demands of earning a living and ensuring my son’s survival.
What keeps the parental disqualification in place? Nothing legitimate, actually. “We are federally prohibited to allow a legally responsible relative as a paid caregiver,” MassHealth’s legislative director Camille Pearson recently told me via email. The state’s spending on the program, to be sure, is partially reimbursed by Medicaid, and Medicaid does impose default limitations on eligibility.
But it is also true that MassHealth may apply to Medicaid for a Home and Community Based Services waiver under Section 1915(c) of the Social Security Act. HCBS waivers are common financing instruments, obtained by MassHealth on a programmatic basis for a multitude of services. California already uses the waivers to permit “legally responsible caregivers” to be paid when they cannot obtain full-time employment due to the child’s needs. MassHealth may seek the same flexibility under the same waiver authority. State legislators have introduced bills since 2015 to force MassHealth’s hand. On May 16, the Joint Committee on Health Care Financing heard testimony on An Act Relative to Family Members Serving as Caregivers, the latest such bill. “I have heard over and over from so many constituents, where one parent has left the workforce, due to the shortage, to care for their loved ones,” State Senator Joan Lovely testified. “This is a really common sense bill.”
Meanwhile, navigating the personal attendant program will soon become more onerous and more humiliating. Electronic Visit Verification will require personal care attendants to propitiate a system of geotracking, logging in and out with GPS-enabled smartphones and tablets. Quantifying the intricate texture of disability into task hours is one thing. But surveilling disabled bodies, in our own homes, outrages the program’s ideal of self-direction.
Electronic Visit Verification is a federal mandate, administered by the same insurance company subsidiary to which MassHealth outsourced authorizations. Optum says its software platform “provides real-time reporting and monitoring” to the state — which means, in effect, that both ends of the program’s claims infrastructure shall fall under private control.
Policy makers are afflicted by a poverty of imagination. Labor acquires value only to the extent that it can be reduced to time and sold in the public domain of production. Activities of daily living such as bathing, eating, grooming, and toileting tend not to elapse in 15-minute increments. Nor does the variety of disabilities present in standard formats. This is why the work pays a pittance — and why parents aren’t paid at all.
This old hierarchy of value makes no sense. If every member of the caring classes went on strike, society would collapse. Yet policy makers cling to a dogma that effectively sabotages the personal care attendant program. The one surefire way to perpetuate scarcity, after all, is to interpret the crisis exclusively in terms of a labor shortage while at the same time keeping wages so low that few workers can afford to take the jobs. All that the state then creates is stigma: Only the poor are fit to care for the disabled. The labor of fortifying human dignity in the jaws of misfortune must be a job of last resort.
Most ordinary people don’t believe that. Not disgust, but the demands of regular employment impede our desire to care for a disabled friend or family member. Eventually, too, all of us come to realize that the distinction between the disabled “them” and the rest of “us” is a temporary illusion.
Nobody can predict what would happen if our government funded our impulse to care for one another. Why not find out? Allow parents to serve as paid providers. And rather than a miserly raise, give personal care attendants $50 per hour.
Transcending the phony conflict between love and money would free everyone to know the sublime meaning that I enjoy in caring for my son. This work is interesting and intimate, a respite from loneliness, and too idiosyncratic to be made obsolete by any machine.
Still, I wouldn’t say no to a paid vacation once in a blue moon.
John Summers is a research fellow in history and disability at New America.