Supporting Family Caregivers

A new study from AARP on how well states support family caregivers who support seniors at home ranked Massachusetts 39th in the nation. Let’s just say that leaves plenty of room to improve.

According to AARP, the economic value of family caregiving was $450 billion in 2009 — four times the total that Medicaid spent on long term care. If family caregivers do not receive needed support, they’re more likely to burn out and reduce their efforts. The result would put greater demand on government programs that provide long term care.

In 2004, 72% of older people living in the community who received personal assistance relied exclusively on unpaid caregivers. These caregivers face physical, emotional, and financial stress that put them at risk. Services such as information and assistance, counseling, and respite care can help family caregivers navigate the service system.

In ranking states, AARP measured such items as: the percentage of family caregivers who say they usually or always get needed support; the extent to which the state exceeds federal and state requirements for family leave and mandatory paid sick leave; policies to prevent discrimination toward working caregivers; policies on financial protection for the spouses of Medicaid beneficiaries; and response to family caregiver needs.

Many caregivers are spouses — some with their own health issues. Others are daughters and sons, more than half (58%) of whom are trying to hold down a job, sometimes taking care of their own children as well. “It is critical,” AARP says, that states “recognize, respect, and support family caregivers.” States can help family caregivers by providing supportive services, respite breaks, education and training. In 2009, Massachusetts ranked 31st in the country for the percentage of caregivers who said that they usually or always received the social and emotional supports they needed.

In terms of providing legal and system supports, Massachusetts ranked 26th in the nation. Our state allows families the maximum federal spousal protection of $2,739 in monthly income and $109,560 in assets as the floor of protection when a spouse qualifies for Medicaid nursing facility care. The federal Family and Medical Leave Act allows workers to take up to 12 weeks of unpaid leave in a year to care for themselves or for a parent, spouse, or child with a serious health condition. There are no federal laws that require private sector employers to provide paid sick leave benefits – and only 2 states provide paid sick leave. Massachusetts is not one of them.

Finally, the AARP survey examined 16 home care tasks, including administration of various types of medications, ventilator care, tube feedings, and other kinds of help that many people with chronic conditions need. This help is critical for family caregivers. Allowing nurses to train and delegate these tasks to direct care workers can ease the burden on family caregivers. Massachusetts, which only allows nurses to administer medications, ranked 32nd in the nation on delegating tasks.

To read the full AARP Scorecard report on caregivers and supports, go to



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