COFAR blog

While the state provides almost $2 billion a year to privately run corporations to deliver a wide range of services to people with developmental disabilities, policy makers and legislators have historically been reluctant to fund even small increases in wages to actual caregivers.

In the case of parents of children with disabilities, the state provides no financial remuneration at all. At least one of those parents would like to see that changed.

We’ve written before about John Summers and his efforts to care for his non-speaking, autistic son Misha.  In an opinion piece in The Boston Globe on May 18, Summers talks about the difficulty he has had in finding Personal Care Attendants (PCAs) to come to his home to help him provide daily care to Misha.

That difficulty Summers is facing is due to an ongoing staffing shortage that has afflicted virtually every facet of the state’s human services system since the start of the COVID pandemic some three years ago.

But there’s more to it than the lack of available staff. Summers, as a caregiver himself to his disabled son, receives no financial help from the state to do that work even though caring for Misha required him to leave his job and has dropped his income below the poverty line.

We have on many occasions called for adequate wages, benefits, and training for direct caregivers in the provider-run group home system funded by the Department of Developmental Services (DDS).  The same neglect of the caregiver role exists when it comes to the funding of services to people living in their private homes, which is ostensibly where the state wants disabled people to live.

As Summers notes, “the concept (of PCA services) reflects a policy consensus that sustaining disabled people in their homes beats the alternative of institutional care.” Yet Summers contends the system as practiced today “cheats “ caregivers like himself.

Parents should be paid as caregivers

MassHealth allows consumers to hire just about anyone they want, including friends and relatives, to provide personal care services to themselves or others in their homes. But so-called “legally responsible relatives,” particularly parents, are barred from receiving state funding for caregiving.

As Summers points out in his article in the Globe, payment to legally responsible relatives is prohibited by the federal Medicaid law. But the state’s Home and Community Based Services (HCBS) waiver allows for the development of state programs that don’t meet specified Medicaid requirements. Payment of parents as caregivers is one such practice that can be permitted under the waiver. So far, however, MassHealth has not sought such permission from the federal government.

According to Summers, state legislators have filed bills since 2015 to allow legally responsible relatives and guardians to be paid for caregiving services. One such bill, S.775, is now before the Legislature’s Health Care Financing Committee.

Governor Healey, however, could act as well to seek such a waiver. Given the ongoing staffing shortage among PCAs and other caregivers, it would make a lot of sense to do so.

Governor labels PCA staffing shortage a priority

Summers points out that Governor Healey has pledged to place the “crisis-level” staffing shortages in the MassHealth Personal Care Attendant Program at the “top of her list.”

It is currently unknown, however, how many of the tens of thousands of persons who are enrolled in the state’s PCA program aren’t receiving PCA assistance due to the staffing shortages. The Healey administration needs to get a handle on that number for a number of reasons.

State funding for PCAs unspent

Summers, for instance, provided us with data he received from MassHealth on May 23, after he had filed a Public Records request for it. The data show the state appropriated more than $432 million in funding for personal care attendant services between 2012 and 2022 that was never spent, apparently because of a lack of available PCAs.

There is a keen irony here. More PCAs would become available if they were paid a living wage for their work. Instead, they are paid just $18 an hour, pursuant to a recent collective bargaining agreement.

The irony is that the $432 million in unspent funds implies there is enough money to boost the pay of caregivers in the human services system. While we have called for a raise to $25 an hour, Summers has suggested $50. So far, no one seems to have information on how much money is available or actually needed to fully address the direct-care wage problem.

Bureaucratic, privatized structure

What the state has done has been to perpetuate a privatized bureaucracy to administer the PCA program, just as it has built a largely privatized group home system funded by DDS. Summers believes the bureaucratic hurdles that the state has imposed have further discouraged people from applying to become PCAs and have led many to leave that profession.

As Summers points out, PCAs are paid though Tempus Unlimited, Inc., a private “fiscal intermediary.”  Those workers will soon have to submit to a potentially intrusive process called Electronic Visit Verification, which is administered by Optum, another private firm.

It seems the state and federal governments are using the Electronic Visit Verification system to target PCAs for potential fraud. But are individual PCAs really committing most of that fraud, or does PCA fraud primarily take the form of improper billing by managers of the PCA provider companies? As usual, the direct care workers get few of the benefits of the system in which they work, but incur most of the blame. It’s apparently good politics.

Misplaced priorities

In sum, it appears the state has over-funded the PCA line item each year for the past 10 years, apparently due to continuing staffing shortages. Yet, the state could have used that funding each year to raise the hourly wages of the PCAs, which might have helped solve the staffing shortage problem.

There is also clearly more than enough funding available to pay parents such as Summers to enable them to care for their disabled children so that those parents are not forced into poverty.

It is not clear that the state has a handle on the extent of the PCA staffing shortage either or on the extent of potential fraud in the system. Yet, the state has created a privatized, bureaucratic administrative process for its PCA program that appears intended to inconvenience and place the blame on the very people who are the key to making the system work – the parents and caregivers.

We hope that in placing the PCA problems at the top of her list, Governor Healey will recognize and work to correct these misplaced priorities.