How Northeast States Are Expanding Home Care

Before Donna Jones, 66, suffered a sudden stroke this year, she considered herself “very self-sufficient” and independent. But the stroke landed her in the hospital and then rehab, with no ability to feed herself, drive or climb a set of stairs.

She started to worry she wouldn’t be able to return to her two-story townhouse in upstate Fulton, New York.

“I hated being in a facility,” Jones says. “So I was pretty determined to do whatever I had to ... to be able to go home.”

At St. Luke Health Services in Oswego, she underwent physical, occupational and speech therapy, but she still struggled with her mobility. Then a nurse at St. Luke told her about the CAPABLE program, a unique model for delivering short-term, home-based care to older adults who want to age in place.

Across the country, more states are turning to innovations like CAPABLE to scale up home- and community-based services as an alternative to nursing home care, according to AARP’s latest Long-Term Services and Supports State Scorecard, which uses 50 spending, quality and access indicators to rank each state’s long-term care system. In the Northeast region, four states—Massachusetts, New York, Connecticut and Vermont—received “innovation points” for providing funding for the CAPABLE program, boosting their overall scores.

EXPLORE: AARP Long-Term Care Scorecard

Each person enrolled in CAPABLE gets about six visits with an occupational therapist, four visits with a nurse and some home repairs and modifications by a handyperson, all done over a span of four to five months. The program focuses on what is most important to each individual—whether that’s being able to walk to their mailbox or stand to cook meals without pain.

For Jones, “the impact was tremendous,” she says.

The new AARP data shows a growing emphasis on meeting the demand for home- and community-based care. For the first time since AARP began publishing the Scorecard in 2011, more than half of Medicaid’s long-term care dollars nationally for older people and adults with physical disabilities went to HCBS instead of institutional care, such as nursing homes. In the Northeast region, Connecticut, Massachusetts, New York and Vermont rank among the top 20 states for Medicaid HCBS spending.

“This is a big deal. We are seeing a breaking point,” says Susan Reinhard, senior vice president of the AARP Public Policy Institute, which published the Scorecard in September.

The shift comes as demand for HCBS has increased, fueled in part by a pandemic that took a horrific toll on nursing home residents. Polls have consistently shown that most older Americans want to age in place. According to a 2021 AARP survey, more than three-quarters of adults 50-plus say they want to remain in their homes as they grow older.

But with America’s population of older adults growing, the chasm between the availability of home care and access to such services is poised to widen.

“We’re going to see a dramatic increase in the 80-plus and 85-plus population” as the boomer generation ages, says Robert Applebaum, a senior research scholar at Miami University’s Scripps Gerontology Center in Ohio. “So the demand for long-term services … is going to be tremendous.”

The CAPABLE program is just one of many innovations highlighted in the Scorecard as ways states can meet that demand. Others include tax credits to help family caregivers with out-of-pocket costs and fast-tracking Medicaid eligibility for those who need home-based care rather than a nursing home, a policy Rhode Island has adopted.

House calls highlighted need

CAPABLE got its start in 2009, when Sarah Szanton, now dean of the Johns Hopkins School of Nursing, was making house calls as a nurse practitioner in Baltimore.

“I would arrive thinking that I’d be addressing people’s blood pressure and diabetes,” she recalls. “But when I would get there, people would drop their keys from the second floor for me” because of their limited ability to manage the stairs.

Others answered the door on their hands and knees, or needed help getting out of a wheelchair to open the fridge.

“I could see how much the environment they lived in was impacting them, perhaps more than their diabetes or their congestive heart failure,” she says.

She teamed up with Laura Gitlin, now dean emerita of Drexel University’s College of Nursing and Health Professions, to cofound CAPABLE, which stands for Community Aging in Place—Advancing Better Living for Elders. The program has grown from a pilot in Baltimore to 33 licensed locations in 22 states, with plans for more expansion in the works.

A 2021 review that assessed six CAPABLE trials, published in the Journal of the American Geriatrics Society, found the program saved far more than its implementation costs (about $3,500 per person) and led to “substantial improvements” in participants’ ability to engage in daily activities, such as cooking, bathing and dressing. Other studies have found similar results.

“It’s so inexpensive,” Reinhard says. “And the longer-term benefits are quite stunning.”

CAPABLE is usually free to participants, with costs typically covered by state funding or private grants. Jim Marsh, a registered nurse for nearly 40 years, says CAPABLE “should be available to folks everywhere.” He is the program’s coordinator for St. Luke Health Services and told Jones about the service after her stroke.

Adrianna Newell

Marsh screens and meets with clients to find out what they would like to be able to do at home. Then he puts in work orders for home modifications—whether it’s installing a grab bar in a shower, adding handrails to a wall or straightening a bunched-up carpet. He also makes the nursing visits.

For Jones, getting up and down 13 stairs proved difficult and dangerous after her stroke. The CAPABLE team installed a railing in her stairwell. When she first got home, she could only manage four stairs at a time. Now she can safely climb and descend the whole staircase. The team also installed grab bars and accessible toilets in Jones’ two bathrooms, along with a second, lower showerhead upstairs.

“I’m actually able to go upstairs to take a shower and wash my hair, which I was doing in my kitchen sink,” she says.

She says the changes have helped her recovery and made her feel optimistic about coping with future challenges. “I’ve made progress, and I’m much happier and healthier at home."

Michelle Cerulli McAdams is based in Massachusetts and has written for the AARP Bulletin for nine years. She covers health, medicine, politics and policy.

More on Home Care

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• Find the Right Home Aide for Your Loved One
• AARP Survey: 8 in 10 Older Adults Want to Age at Home