Donna Gibbs was sent to a nursing home after complications from gastric bypass surgery caused paralysis. Eventually, she was placed on an Alzheimer's ward.
"I was living with death," said Gibbs, 54, of Middleton. "People were dying around me every day."
Gibbs lived at the nursing home for more than three years, unaware Medicaid could pay for home-based care for her to live independently. Once a friend mentioned that option, she chose it. It took more than a year to make the arrangements to move her to a condominium with in-home help 63 hours a week.
Now, Gibbs said, she's thrilled to be living independently, relishing such simple pleasures as choosing her own food and schedule.
Many disabled and older Massachusetts residents find it difficult to get Medicaid to help pay for the services they need to live on their own. Their struggles are worse than those of residents in most of the country, according to a scorecard compiled by the AARP Public Policy Institute, the Commonwealth Fund and the SCAN Foundation.
In the national survey, Massachusetts ranked 40th among the states and the District of Columbia last year for the percentage of Medicaid beneficiaries first receiving long-term care services in a home- or community-based setting, rather than in an institution. It ranked 30th for overall affordability and quality of long-term services and supports. The survey evaluated 25 different measures such as home care, assisted living and nursing home facilities.
Massachusetts received its worst rankings on two affordability measures, scoring 46th for the high costs of both private home care and private nursing home care, when compared with median household income. The state also got low ratings for support for family caregivers, 39th place.
Ten percent of the state's nursing home residents could manage at home if necessary services were provided, the scorecard showed.
Gov. Deval Patrick, D, pledged in 2008 that his administration would help ensure that older and disabled residents could live independently, which most people want. But Norman said the administration has not done nearly enough. Only 31 percent of people needing long-term support are first given the option of in-home care, he said. "Putting people in nursing homes as a first choice has to change."