I offered the following testimony on October 16, 2023 for An Act allowing spouses to serve as caregivers. You can watch the video here.
Chair Kennedy and Chair Livingstone,
I am honored to offer this testimony in support of S. 67 – An Act allowing spouses to serve as caregivers. I’m pleased to join House partners, Rep. Scanlon and Rep. Orall, whose bill is H. 216. In addition, Senator Tarr has a related bill in the Health Care Financing Committee.
I’m grateful to the many people who have signed up to testify on behalf of this legislation, as well as the outpouring of support it has received. I am particularly grateful for the expertise of Mass Home Care, which is leading a broad supportive coalition for the bill.
S. 67 / H. 216 is a simple – and compassionate – piece of legislation.
State policy encourages individuals living with disabilities to get the care they need at home, rather than in an institution, if they wish.
Under current MassHealth regulations for the PCA (Personal Care Attendant) program, paid care may already be provided by family members — by a son or daughter, a grandson or granddaughter, aunt, uncle, niece, or nephew. Care may even be provided by a former spouse!
These relatives are appropriately reimbursed for their time spent caring for a MassHealth member who is at home rather than in a nursing facility.
Yet, there is one glaring omission to this family unit – the spouse.
This bill simply broadens the definition of “family member” to include the spouse of the person with disabilities. It directs EOHHS to seek a federal waiver if one is needed to make this change, within six months of the bill’s enactment.
I want to quickly make four related points:
There is a severe shortage of personal care attendants caring for Masshealth members with disabilities. The Governor has called it a “crisis-level” shortage. One study found that there were 4,400 unfilled positions last spring. These are people on a waiting list who can’t get the home care they need.
Allowing qualified spouses to serve family members will provide a pool of caregivers that will reduce the waitlist and allow more people to get the care they need to stay at home.
As of last summer, 26 states have implemented this reform. Thirteen of these states started permitting spouses to be paid caregivers during the pandemic and are now making this permanent. In addition, the US Veterans Administration also permits spouses to serve as caregivers.
A 2012 California study compared those who had paid spouse caregivers with those having other relatives or unrelated individuals as their caregivers. The spending comparison found that average monthly expenditures for all services were lower for those with a family provider. Additionally, there were better outcomes for those with relatives as paid caregivers.
Continuity of care is a critical aspect of care quality. Authorizing spouses to serve as a caregiver reduces turnover among caregivers. A 2015 study found that turnover among family member PCAs was less than half that of non-family PCAs.
Today you will hear compelling stories of people with disabilities where spouses could make a difference in providing loving care.
I respectfully urge the Committee to report favorably on S. 67 and H. 216.