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‘Independence is almost a God-given right.’ Will lawmakers protect it in the budget?


‘Independence is almost a God-given right.’ Will lawmakers protect it in the budget?

Jun 05, 2023 | 5:00 am ET
By Annmarie Timmins
‘Independence is almost a God-given right.’  Will lawmakers protect it in the budget?
Andrew Strelczyk, 70, who is blind and uses a wheelchair, wants to live in his Nashua apartment, not a nursing home. He can with basic services provided by Medicaid-funded Choices for Independence program. (Kate Brindley | Kate Brindley Photography)

Andrew Strelczyk lost his vision and both legs before he was 60, in a string of accidents that could befall anyone. Now 70, he’s eligible for a nursing home but is determined to continue living in his Nashua apartment, listening to classical music, enjoying time with his 81-year-old fiancé, and doing what he wants to do, when he wants to do it.

Some independence, Strelczyk said, is “almost a God-given right.” But it’s not guaranteed.

Lawmakers will decide this month when they vote on the state budget whether Strelczyk and hundreds of others like him in New Hampshire will continue to have that choice. 

Without significantly higher Medicaid payments from the state, at least two social service agencies have warned lawmakers they will leave the Choices for Independence (CFI) program, which allows people who could be in a nursing home to remain at home by helping them with basic tasks such as grocery shopping, cooking, and bathing. 

In 2021, an average of nearly 3,300 Granite Staters received those services each month, according to an analysis by the New Hampshire Fiscal Policy Institute. Participants between 18 and 64 must have a chronic illness or disability that makes them medically eligible for a nursing home. Those over 65 don’t have to have either a chronic illness or disability, but must still be eligible for nursing home care. They must also qualify for Medicaid. 

CFI services cost four to five times less than nursing home care, about $18,000 a year compared to $60,000 to $100,000. But for years, the state budget has prioritized more expensive nursing home care over CFI.

In fiscal year 2019, the state put 47 percent of its long-term Medicaid funding into CFI services, the lowest in New England and 12th lowest in the country, according to the New Hampshire Fiscal Policy Institute. In Maine and Vermont, it was 64 and 68 percent, respectively.

The analysis said that while the state’s Medicaid payments for nursing home care kept pace with inflation between 2011 and 2021, its CFI investments did not. Had the state funded them similarly, the CFI program would have seen an additional $153.2 million in that time.

‘Independence is almost a God-given right.’  Will lawmakers protect it in the budget?
The New Hampshire Fiscal Policy Institute found that in 2019, New Hampshire ranked 12th in the nation in Medicaid spending on in-home long-term care. It devoted more to higher-cost nursing home care. (Screenshot | New Hampshire Fiscal Policy Institute)

CFI providers have pleaded with lawmakers to end or at least reduce that funding disparity. They’ve been on a roller coaster ride watching budget negotiations.

Other organizations have joined them.

That includes AARP New Hampshire and New Hampshire Legal Assistance, which is suing the state for allegedly providing people fewer Choices for Independence program services than they qualify for.

Gov. Chris Sununu included an additional $24 million for Medicaid rate hikes for all providers, including those in the CFI program as well as mental health and substance use treatment programs. The House increased that to $134 million in its budget, still short of the $200 million increase all Medicaid-funded providers had requested.

Two weeks ago, the Senate Finance Committee appeared on track to cut that to $119 million, but last week agreed to support the House’s figure. 

The budget still needs to clear the Senate and a second vote in the House, where members will decide whether to accept any changes made by the other chamber. 

“I have learned to not really trust anything until it’s completely signed by the governor,” said Amy Moore, director of Ascentria Care Alliance’s in-home care program, which includes CFI services. “This is a huge step, and we’re super excited about it. We just have to keep pushing forward because (CFI funding) has been neglected for so long. This is to keep our doors open to do what we need for all the people that are coming on the program and the people we’re turning away.”

‘Essential to your well-being’


‘Independence is almost a God-given right.’  Will lawmakers protect it in the budget?
Strelczyk believes being able to live where he wants is essential to his mental wellness. (Kate Brindley | Kate Brindley Photography)

Strelczyk’s injuries occurred over a span of five years, beginning in 2005 with a favor that hundreds of nephews have no doubt done for their aunts: yard work. Strelczyk’s aunt wanted her Nashua yard free of rose bushes. 

He stepped into a hole while pushing her lawn mower and upset a nest of ground wasps and hornets. The 200-plus stings that followed left him blind in his right eye. He was 50. A string of catastrophic injuries followed. A 2007 car accident led to the amputation of his right leg. Blindness spread to his other eye soon after. In 2010, Strelczyk developed cellulitis, a bacterial skin infection, in his left leg and lost it below the knee. 

Meanwhile, he was going through a divorce. 

“It was a tough year, yeah,” Strelczyk said. The injuries defined much of what he can physically do, but not his outlook on life. The same word he uses to describe his fiancé, Sandee Goldberg, of Nashua, whom he calls Bubbles, fits him too: effervescent. 

“That’s because I can’t see,” Strelczyk said with a laugh. “Everything looks good except for the economy.” 

Home for Strelczyk is Gatewood Manor, a rent-subsidized apartment building for people who are at least 62 or have disabilities. His neighbors visit so often, he and Goldberg barely get time alone.

Strelczyk said his life would be equally dark if he had to give that up. 

“Independent life is essential to your well-being,” he said. “I mean, just being able to turn on the TV or turn on the radio, or go up and down the hallway, and do what you want to do.”

‘Independence is almost a God-given right.’  Will lawmakers protect it in the budget?
Strelczyk calls his fiance, Sandee Goldberg, 81, Bubbles for her effervesce. (Kate Brindley | Kate Brindley Photography)

Waypoint, which provides human services to a broad population, including those receiving long-term care, uses its CFI funding to give Strelczyk nine hours of help each week with grocery shopping, housekeeping, and cooking. He also receives assistance with bathing from a second caretaker. If Waypoint leaves the CFI program in July, Strelczyk will lose those nine hours of assistance that allow him to live alone.

He thinks he could survive life in a nursing home, but not thrive as he does now.

Before his accidents, Strelczyk volunteered with the Boy Scouts, Elks, Knights of Columbus, and the American Legion. Many of those organizations and others remain part of his life; members brought him meals after his injuries and stayed part of his social life. “People like helping people,” he said, speaking for them and himself.

Strelczyk also enjoyed art. Twenty years after losing his vision, he can see the details of an Andrew Wyeth print hanging above his bed. 

Strelczyk would like lawmakers to consider a few things as they decide the budget: He votes. And he believes sufficiently supporting CFI services is financially sound and morally right.

“If we don’t get support, we would be a bigger burden to the economy,” he said. “By giving us individual support, not only are you (saying) that we’re necessary, but you’re helping us help others. Even though we’re being helped, we can help others.”

‘Old people taking care of older people’

Tom Kangas’ last caregiver retired at 80. He puts his fingers in his ears when a reporter asks his current one, Joan Ilves, how much longer she can do her job at 75. Kangas, 63, doesn’t want to hear her answer. 

Kangas has Parkinson’s disease, and the 23 hours a week Ilves spends with him — doing his shopping, cooking meals, arranging his medical appointments, paying his bills, and helping him bathe — allow him to live independently in his Charlestown home. Kangas and Ilves have been paired together for eight years.

‘Independence is almost a God-given right.’  Will lawmakers protect it in the budget?
Tom Kangas, 63, of Charlestown, and his caretaker, Joan Ilves, 75, were paired together eight years ago. She works with him 23 hours a week. (Annmarie Timmins | New Hampshire Bulletin.)

Without help from someone, Kangas would have to move into a facility, an option he said he’ll refuse. “I’ll never say I’m ready for a nursing home,” he said. “It gives me stomach cramps just thinking about it.” 

Without Ilves specifically, Kangas would lose someone he trusts completely, with his care, finances, and well-being. He’d also lose what is clearly the most important relationship in his life. She doesn’t cancel or quit like prior caregivers. She comes every other day, including Sundays, so Kangas is never alone two days in a row.

They’ve become so close, they finish one another’s sentences and trade jabs of affection. 

“I  pretty much run his life,” Ilves said, waiting for Kangas’ comeback. He rolled his eyes. “Yeah right.” Then he threatens to call her daily if she retires. 

Nonprofit Ascentria Care Alliance pays Ilves $14.88 an hour, in part with money raised from donors, to provide Kangas services through the Choices for Independence program. Ilves said she could not afford to care for Kangas if she didn’t have additional income. 

Her age, her husband’s health needs, and the challenge of hiring a new generation of caregivers weigh on her mind. Two of her husband’s caretakers are nearing 70. “It’s old people taking care of older people,” Ilves said.

Kangas has survived three auto accidents and the blow of learning in 2002 that he had Parkinson’s, the same year he got divorced. 

Kangas said he wouldn’t survive losing Ilves’s assistance and the independence it gives him. 

Ilves agrees. She said caring for him to allow him to remain home has become her “life’s mission.”

Kangas suffered minor injuries in his first two accidents, the second of which was caused by an impaired driver who crossed the center line.

His third accident was the most serious. Kangas was returning from a doctor’s appointment in Keene in January 2007 when he blacked out and collided with a wrecker. His injuries landed him in a rehabilitation facility for months. He had to give up his career and learn to walk again, he said. 

‘Independence is almost a God-given right.’  Will lawmakers protect it in the budget?
Kangas thinking about his children and grandchildren give him strength on his most difficult days. (Annmarie Timmins | New Hampshire Bulletin)

Ilves has seen Kangas’ symptoms worsen in their eight years together. He’s had to replace his cane with a wheeled walker. He used to accompany her on shopping trips; now that’s too painful. His nephew has taken over the lawn mowing. He leaves the house only for medical appointments.

Somedays simple things like making coffee and completing word puzzles are a challenge. In those moments, Kangas thinks of his children and his dreaded alternative: living in an institution.

As lawmakers debate how much to increase Medicaid rates, Kangas wants them to know the decision is “a matter of life and death” for him.

“Whether they’d take me seriously or not, if I had to go into a home, it would kill me,” he said. “It would just be a matter of time. That’s it in a nutshell, and Joan knows I’m not kidding.”

‘She’s not nursing home material’

Maureen Cummings was well enough to be discharged from an Exeter nursing home after a six-week stay for sepsis stay in 2020. She was more than ready to leave, too. Cummings wanted to get back to her apartment and job, taking calls on a peer support line from people like her whose health conditions require help from others.

‘Independence is almost a God-given right.’  Will lawmakers protect it in the budget?
Maureen Cummins, 65, of Dover, was injured in a car accident in 1984. With the help of caretaker Pat Sanfacon, 75, and a lift, she can live alone. (Kate Brindley | Kate Brindley Photography)

Cummings, 65, of Dover, needed just one thing she couldn’t find: Someone to come by on weekends to cook, help her dress, and ensure she moved from her wheelchair to bed and vice versa. Medicaid pays for that care. But at about $13.50 an hour, workers are increasingly hard to find. Cummings’ daughters, who work and have children themselves, stepped in. Her boyfriend helped too.

“I feel bad for my kids sometimes because of all my health issues. They have busy lives,” Cummings said. “But I could not have come home if they didn’t help on weekends.” 

Cummings now has two caregivers who spend 35 hours a week with her. One, Patricia Sanfacon, is 75 and has three other clients. 

Cummings worries about losing her and her other caregiver to higher paying jobs or retirement.

Sanfacon said she has no plans to retire because she can’t afford to. Her 81-year-old husband also still works. And she loves the work, she said. She cared for her grandmother until she died and then did the same for her parents. 

Her employer, Granite State Independent Living, connected her with Cummings about 2½ years ago. She sees her about 15 hours a week.

“She’s not nursing home material,” Sanfacon said. “She does a lot for herself. She gets around all by herself. She can drive. She doesn’t need the nursing home.”

Sanfacon helps Cummings use her electronic transfer lift to get into bed. She cooks supper and makes sure she always leaves Cummings with three bottles of water to get through the night. Sometimes she arrives with a Burger King Whopper because she knows Cummings likes them so much. When someone dropped by with wildflowers recently, Sanfacon knew to place them in a way that still allowed Cummings to see her family photos from her bed. 

It was a car accident that brought Cummings into the program.

She was driving to Texas in 1984, her husband in the passenger seat and daughter in the back, when her tires caught the road’s soft shoulder and flipped. She was 22. She adapted to using a wheelchair, working as a reporter on the Seacoast, and raising her two daughters alone. 

For the past eight years, Cummings has lived in her four-room Dover apartment, where she has hung pictures of her daughters and grandchildren, along with greeting cards from friends in nearly every room. She treasures her cat, Purrl.

Cummings loves the freedom of driving her van, when the wheelchair lift is working and her eyes aren’t bothering her. She takes pride in giving others support through her work answering calls on a peer “warm line,” a job she’s held for nearly 20 years.

“I’ve tried to work and be productive. I’m getting older, and I just want to get my health back, and work some, and, see my family when I can and my friends,” Cummings said. 

‘Independence is almost a God-given right.’  Will lawmakers protect it in the budget?
Maureen Cummings, 65, of Dover works from home, answerig calls on a peer line from others with health conditions, including those in nursing homes. (Kate Brindley | Kate Brindley Photography)

Long-term care providers say a nursing home is a necessary and preferred choice for many; they want it to be that, however. A choice, not the only option.

“If I were in a nursing home, I’d be stuck,” Cummings said. “I wouldn’t be able to drive. I wouldn’t have my cat. I wouldn’t be allowed to have my job. It would be like this lady I talked to on the warm line who is in a nursing home. She said it’s worse than prison.”

This article was written with the support of a journalism fellowship from The Gerontological Society of America, The Journalists Network on Generations, and the John A. Hartford Foundation.