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Legislative Viewpoint

Supporting spouses as caregivers in Massachusetts

KulikState Representative Steve KulikA spouse, it often seems, would make the ideal caregiver for his or her partner, familiar with their wants and needs, familiar with their domestic surroundings. Yet under current regulations governing MassHealth, the state's health insurance program for people of limited means or dealing with disability, a spouse is not included among the relatives, friends or providers than can be paid to offer care.

Many of us in the state Legislature have been troubled by this paradox and been working to make a change in the regulations. MassHealth, too, has been reviewing the issue under a mandate from the Legislature. We put language in the Fiscal Year 2016 budget requiring MassHealth to complete a report by December of 2017, with a plan to implement spouses as paid caregivers. However, as of this writing, the report has not yet been issued.

One of my colleagues, Rep. Jennifer Benson of Lunenburg, filed a bill in this legislative session called "An Act Regarding Spouses as Caregivers" (H336), which would require that any program of home and community based services paid for by MassHealth, in which family members are allowed to serve as paid caregivers, should allow spouses to also be paid for their care and time.

As of this writing, Rep. Benson's bill was still being reviewed by the Legislature's Joint Committee on Elder Affairs under what is called an extension order that ends May 9. On the Senate side, a similar bill, filed by Sen Barbara L'Italien of Andover (S55), was given a favorable recommendation by the Joint Committee on Children and Families and Persons with Disabilities and sent to the Health Care Finance Committee.

Rep. Benson is hopeful that the Elder Affairs Committee will give her bill a favorable report, as she sees the benefit to so many people in need. “There are situations when a caregiver can’t be found, and a spouse is forced to give up what little source of income they have so they can stay home and care for their loved one. That pushes people who can’t afford a caregiver further into poverty. This bill would allow a MassHealth recipient to have their spouse serve as their caregiver and receive reimbursement in the same way that other family members can under current law.”

What makes the MassHealth prohibition on paying spouses particularly puzzling is that husbands or wives can earn an hourly stipend under different state-funded programs of "consumer-directed options" through home care agencies. Highland Valley Elder Services, which covers several of my towns in Hampshire County, helped introduce the model more than 15 years ago. Similar services have also been available for many years in Franklin County through LifePath, formerly known as Franklin County Home Care. However, unlike MassHealth, participants in consumer-directed services are charged on a sliding scale. MassHealth recipients do not bear any financial burden. Also, hundreds of thousands more people are covered by MassHealth and would immediately benefit from statutory reform.

To determine the level of care a person may need, LifePath or some other provider agency will conduct an assessment of a person's ability to meet their basic daily needs such as bathing, dressing, shopping, meal preparation or managing their medications. The number of hours of care provided each week is matched to the person's needs.

When we know that spouses can be (although admittedly not always) very well-suited caregivers and when we know that helping a frail elder or disabled young person stay in their home can be more comfortable and, for the state, more economical than an institutional setting, it is time to make this needed reform and allow spouses to be paid for their time. I support both the House and Senate bills that will force a change in MassHealth regulations through statute

Steve Kulik has represented the First Franklin District, which includes 18 towns in Franklin and Hampshire counties and one town in Hampden County, since 1993. He plans to complete his years of service and retire from the Legislature at the end of 2018.