By Colleen Quinn


STATE HOUSE -- With spinal muscle atrophy, Michael Fernandes needs someone to help him with daily tasks most people take for granted like putting on a coat or eating a meal.

Fernandes, a Provincetown resident who uses a wheelchair, has three personal care attendants help him with daily routines. When he married three years ago, he assumed his spouse would be able to remain one of his attendants. He was surprised to find out that under state regulations, that was not the case.

In Massachusetts, most family members, except for spouses or dependent children, are allowed to be paid caregivers and reimbursed by MassHealth, also known as Medicaid.

Fernandes said he would prefer to have his spouse, Susumu Kishihara, care for him when a personal care attendant cannot, like taking him to medical appointments or to church. "It was an incredible education for us," Fernandes said Tuesday. "We certainly felt that doesn't make sense."

Fernandes was at the State House to lobby for legislation (H 3716) that would allow spouses to be paid caregivers. He brought nearly 1,300 signatures and dozens of anecdotes from people all over the state who signed an online petition.

The push for the bill comes as House budget writers consider Gov. Deval Patrick's request for nearly $19 billion in spending next year in the Executive Office of Health and Human Services, or more than half of the fiscal 2015 state budget.


Patrick is seeking a $1.68 billion, or 9.8 percent increase in health and human services spending, with $1.35 billion in new spending directed to the huge MassHealth program.

Some people have gone to extremes - like divorce or postponing marriage - in order to be reimbursed by the state to take care of the person they love. Other spouses have had to give up their jobs to care for a sick or disabled spouse, often leaving the family in dire financial straits, according to Al Norman, executive director of Mass Home Care.

The state would need a waiver from the federal government to allow spouses to be paid by Medicaid and Medicare. Only MassHealth recipients would be eligible to have spouses paid as caregivers.

Seventeen other states allow spouses to be paid caregivers, including Vermont, California and Wisconsin. California has allowed spouses to be paid caregivers since the mid-1990s. There are approximately 25,000 people in Massachusetts with personal care attendants and additional 4,000 to 5,000 in adult foster care, according to Norman.

Norman - who has advocated to change state law on spouses for years - said people are under the false impression that it would cost the state money, and that spouses would be paid 24/7. Norman said allowing spouses to provide care would not create any newly eligible people for the personal care attendant or adult foster care programs. Those who receive care must qualify under state and federal guidelines, and the number of hours they receive is determined by their level of disability.

In order for the federal government to grant a waiver, the state would have to prove it would be cost-neutral, according to Norman. "There are no blank checks," he said.

Allowing spouses to act as caregivers would save the state money, Norman argues, because it would keep people out of nursing homes. Norman said there is also a shortage of people willing to become caregivers that will eventually create a crunch as Baby Boomers age.

The Joint Committee on Children, Families and Persons with Disabilities in October gave the bill a favorable report in October, and it is now under review by Joint Committee on Health Care Financing. The bill was filed by Rep. Jennifer Benson (D-Lunenburg), vice chair of the Health Care Committee.

Legislation allowing spouses to become caregivers made it out of committee last session, but did not advance in either the House or Senate, according to advocates.

Benson plans to "take the temperature" of committee members on the bill. With proper supports and supervision from home health care institutions, spouses as caregivers would be a good solution for some families, she said. "It is not the right fit for everybody, but it can be the right fit for some," she said. 

While it is common for spouses to care for an ill partner, it would be easier for everyone involved if a home health care institution provided support and guidance - which would be the case if a husband or wife was a paid caregiver, Benson said.

In some cases, it might be necessary for a home health provider to step in and say it is time for someone else to take over, Benson said.

Benson said it is often easier for an outside professional to make the call that the care-giving situation is not working anymore. "It allows the couple to do this work, and to also realize when it is time to end that part of their relationship," she added.

Recently, Fernandes has had to give up many of the activities he was involved with, and now feels isolated, he said. If Kishihara was paid, Fernandes said his life would change for the better. Kishihara emigrated from Japan five years ago after meeting Fernandes.

Rep. Sarah Peake, a Provincetown Democrat, said Fernandes has "put a face on the need to change the law."

Sen. James Welch (D-West Springfield), Senate chair of the Health Care Financing Committee, said he thinks the bill has a "great deal of merit." The Health Care Financing Committee has a later deadline, April 30, to report out bills. Most joint committees face a reporting deadline of March 19.