MA Bill Aims To Remove Barrier For Single Parent Households

Jeff* and Mike are 19-year-old twins who love spending time with their peers, particularly at school dances, and love having the ocean water roll over them as they sit on the beach. They are sweet, upbeat young men who bring a smile to anyone who meets them.

Jeff and Mike also have autism, an intellectual disability and are non-speaking, all of which requires that they receive constant supervision and care. The twins’ father passed away. Their mom, Amy, is raising the young men on her own. She can only work during the limited time the twins are in school, which means that money is extremely tight for their family.

Amy, Mike and Jeff clearly love each other. Amy also acknowledges that caring for the 5’7” 185-pound young men is exhausting and a full-time job. Among other things, the guys need hands-on assistance in the shower, help putting on their deodorant. Amy washes their faces, shaves them, combs their hair, cuts their finger/toenails. Amy jokingly calls herself “their Uber driver,” including transporting them to frequent doctor appointments. Amy needs to pick out weather-appropriate clothes for her sons each morning, put on their socks, cook all their meals and clean their home. One twin needs help toileting. Mike and Jeff sometimes wake during the night, interrupting Amy’s sleep. Amy is required to get them out of bed every morning since the twins sleep through an alarm clock. The young men have no safety awareness and cannot be left on their own. Amy has an apparatus blocking their front door so that Jeff and Mike can’t leave their apartment without Amy’s knowledge.

Massachusetts has an Adult Family/Foster Care (AFC) program that provides paid caregiving support for people eligible for MassHealth aged 16 and older who are unable to live alone due to a medical, physical, cognitive or mental condition - and who require daily assistance with one or more activities of daily living (ADLs). The paid caregiver can be anyone who lives with the person requiring care who is at least 18 years old. The paid caregiver can be a family member – as long as it’s not the person’s spouse, the person’s parent if the person is a minor, or the person’s legal guardian.

When Jeff and Mike turned 18, Amy needed to go to court to obtain guardianship so that she legally could continue making healthcare and educational decisions for her sons. That means – as a single mom – Amy cannot be both her sons’ guardian and paid AFC caregiver. Because Amy’s family desperately needs income, she is now considering the heart-wrenching decision of designating another family member as the twins’ guardian.

In two parent households with disabled adult children, one parent often becomes the guardian while the other is designated as the paid caregiver. This enables the parent who is unable to work due to the demands of caring for a disabled adult child to bring necessary income into the household. The current law needs urgent updating to take into consideration single parent households, many of whom are families of color.

Senator Joan Lovely (Salem) and Representative James O’Day (West Boylston) have introduced legislation to ameliorate this inequity. Senator Lovely said:

I am proud to partner with my House colleague, Representative James O'Day, in filing S.775/H.1232, An Act relative to family members serving as caregivers, that will keep struggling families intact while properly compensating family caregivers who cannot maintain jobs because they are caring for their loved ones. Thank you to The Arc of Massachusetts, Advocates for Autism of Massachusetts (AFAM), and the scores of families affected by the lack of caregivers to assist in their daily lives. Having family with autism, I’ve seen firsthand how families need support, and this bill will go a long way to fill these huge gaps in care.

Rep. O’Day echoed the need for the legislation, saying: “I filed this bill because caring for an older, disabled or sick family member can be a full-time job, and thus it should be compensated as such. Single parent households shouldn’t lose this payment simply because it’s the same person doing the caregiving and acting as the adult child’s guardian.”

Maura Sullivan, The Arc of Massachusetts’ Senior Director of Government Affairs and Health Policy, emphasizes another benefit of the bill: allowing parents to fill a critical workforce gap. Ms. Sullivan said:

Massachusetts is facing a grave shortage of personal care attendants (PCA) and AFC providers. As a single mother who is guardian of my two sons, I have no option to be a paid PCA, although I have been unable to find PCA help on the weekends for over 3 years and had no PCA help at all during the first 18 months of the pandemic. Being a paid caregiver for your own child or adult loved one isn’t right for everyone, but it is the best alternative for some, and the only possible choice for many others.

The legislation championed by Senator Lovely and Rep. O’Day is a necessary update to the archaic policy that excludes single parent families, who often need the money the most. It would help countless families like Amy’s who are struggling financially due to the caregiving responsibilities that limit their ability to work outside the home.

* Amy, Jeff and Mike are pseudonyms used to protect the family’s privacy.