How America treats spouses caring for paralyzed partners – Washington Post – The Washington Post

Portland, Ore. — In the mornings, Jane Morgan puts on her ballet shoes and pliés to maintain her flexibility. She stretches her arms and neck to prevent injuries, then does push-ups to increase her stamina.

Morgan, 30, needs to stay strong for her boyfriend Conner Slevin, 31, who was paralyzed in a devastating accident at the beach early last year.

“I’m caregiving for the first time ever through a pandemic for Conner, who’s now quadriplegic, yeah, it’s been hard,” Morgan said.

The pandemic year has exposed the cost of caregiving on a previously overlooked workforce, almost entirely made up of women, who work for little pay — or in some cases no pay.

Who gets paid to be a caregiver is complicated. Medicaid, Medicare and private insurance companies have different rules and requirements for paying family members, as do individual states — and in most states, married caregivers are not counted as workers.

Only eight state Medicaid programs allow married people to be paid caregivers to their partners. Eight additional states have private programs that allow spouses to be paid as caregivers.

But across much of the country, interabled couples, a relationship with one person who is disabled and one who is able-bodied, are placed in a terrible predicament: marriage or compensation for the grueling work of managing one of the most expensive medical conditions.

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Morgan and Slevin had been dating for just over a year and were beginning to think about marriage in January 2020 during a trip to Puerto Escondido, Mexico, to attend a friend’s wedding.

Slevin had asked Morgan’s parents for their blessing a month earlier and was emailing with a designer to get an engagement ring made.

“I was going to come back and seal the deal,” Slevin said with a laugh.

Three hours before the wedding, the pair were swimming in the ocean when they encountered a rogue wave.

Morgan dived under, but Slevin heard his neck break as the current pushed him under.

Morgan flipped her boyfriend onto his back and dragged him to shore.

Slevin was paralyzed from the neck down. He has since regained some function in his shoulders and arms.

A spinal cord injury can happen to anyone, but men account for 80 percent of all new spinal cord injuries in the United States each year, according to the Mayo Clinic. Top causes include motor vehicle crashes, falls (including during activities such as football or diving) and gunshot wounds.

In 2020, approximately 294,000 Americans were living with an SCI, according to the National Spinal Cord Injury Statistical Center, many requiring expensive care to manage chronic health issues. Medical expenses in the first year of injury range from $347,000 to more than $1 million, according to the Christopher & Dana Reeve Foundation.

Yet Medicaid reimbursement rates for home care in some states haven’t changed in decades, said Fred Johnson, President and CEO of Team Select Home Care and the founding adviser for The Unforgotten Families, an advocacy group that helps train and certify family members to become caregivers.

In most states, in-home health-care workers are usually paid minimum wage, or slightly above — making it difficult to find skilled nursing care for people with spinal cord injuries.

“We have to convince nurses to take a 20 to 50 percent discount over what they can make in a hospital to care for one of these [patients] in the home,” Johnson said. “So what happens is in these cases, these people that desperately need the care end up not getting it unless there’s an option for a family caregiver.”

Over the years, states have experimented with allowing patients to hire their own caregiver, usually a family member. However, many states have been reluctant to continue this model because of instances of fraud and abuse.

The coronavirus pandemic made the caregiver shortage even worse.

Those with a high-level SCI have decreased lung capacity and often cannot cough on their own because they’re unable to contract their abdominal muscles. Caretakers perform an assisted cough, pushing on a person’s chest or squeezing their rib cage to produce a cough.

Since the coronavirus is a respiratory infection, caretakers had to be extremely cautious at the height of the pandemic and rarely were able to leave their homes or risk exposure interacting with people before vaccines became available.

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In March, the American Rescue Plan Act allocated a 10 percent increase in federal funding for community-based and in-home care services and allowed states to use some funds to pay family caregivers. But there has been a long-standing push for permanent legislation.

President Biden’s original $2.3 trillion infrastructure plan called for $400 billion for expanding access to quality, affordable home- or community-based care for aging relatives and people with disabilities. However, the measures were later dropped after Republicans asserted that they did not want “human infrastructure” included in the bill.

Biden has vowed to pursue money for caregiving in a separate bill that could pass with only Democratic votes.

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The Washington Post interviewed more than a dozen female caregivers in interabled relationships for this story. They talked about the emotionally taxing and sometimes dangerous physical work involved in caring for someone who is paralyzed. But they also said they love their partners deeply and are the most qualified for the job because of the consistent and reliable care they can provide.

Several said it’s not only about compensation but also recognition for keeping their loved ones alive.

One woman in western Pennsylvania said she has been trying since 2017 to hire an outsider caregiver, which her husband’s insurance would cover. She said three home health aides quit after a single day on the job and another stole her engagement ring after working a couple of months. She said many people are unwilling to help her husband, who has a degenerative spinal illness, with his bathroom use and bathing.

One newlywed in Arizona said the care is intimate and personal, and she doesn’t want a third person in her marriage. Another woman said she left her husband with a medical aide for an overnight trip with her best friend. When she returned, her husband had cuts and sores on his lower body.

The Post followed three of these women, in different stages of their relationships, who describe the impact that caregiving has on their finances and partnerships.

Expected of a spouse

“Ready? Feel good? Okay, one, two, three,” Morgan says about 10 times a day.

Before a transfer, she stretches down, locks Slevin’s feet together, rounds her back, grabs the top of his pants and lifts her partner, who weighs about 170 pounds, into his wheelchair, into the car, onto the couch, to their bed.

As a girlfriend, Morgan does nearly everything for Slevin. She changes his catheter every three or four hours, ties his shoes, cooks three meals a day, does every load of laundry, and is deeply involved with his physical therapy.

She spends about two hours a day doing exercises with him on a blue mat sprawled across their bedroom floor. A couple of times a week she drives him to physical therapy sessions, which cost $110 an hour and are not covered by Oregon state Medicaid.

She receives $15 an hour for 40 hours a week of work, with take-home pay of about $1,700 per month. But Slevin, who has no hand or finger mobility, needs far more assistance. He receives $1,900 per month from Social Security disability. The couple pay out of pocket for additional wipes, gloves, certain medications and adaptive equipment, and items such as compression leggings, socks and wheelchair grips.

After Slevin was injured, Morgan stopped working as a bartender at a winery to care for him.

A GoFundMe campaign raised just over $150,000, which paid for neck surgery and immediate care in the hospital. The money lasted eight weeks.

Oregon allows spouses to be paid caregivers, but marriage would reduce Morgan’s hours and leave the couple worse off financially.

The state would continue to pay Morgan for the same number of hours for looking after Slevin’s hygiene, medical and transportation needs, Elisa A. Williams, communications officer at the Oregon Department of Human Services, said in an emailed statement. “But Instrumental Activities of Daily Living (housekeeping, meal prep and shopping) are reduced in half since the spouse lives in the home,” she said.

Morgan argues the state should not assume a spouse will perform certain duties.

“I can’t believe that they actually have the audacity to say that because it’s expected of a spouse to care for their husband or wife, that the hours that they’ll be paid for the care that they are providing is going to be automatically less than that for somebody else,” Morgan said. “That just seems totally ridiculous to me.”

Before the accident, the couple loved hiking, being with friends and going to restaurants. Morgan enjoyed ballet classes and hot yoga, staying in shape in hopes of restarting her dance career. She performed for 10 years with the Suzanne Farrell Ballet before the company disbanded in 2017.

Now, the couple’s routine is the same every day. After helping Slevin use the bathroom, making breakfast and walking their dog, Big Moe, Morgan spends some time stretching and doing crunches.

Slevin’s physical therapy sessions are really the only times Morgan gets out; she makes grocery runs and talks on the phone with her parents, who live in Annapolis.

In between taking Slevin to appointments and after cuddling and watching movies on the couch at night, she spends time studying for online classes at a community college, prerequisites for college courses. She said she never pursued college before but she’s incredibly proud she was able to earn an A in math last semester.

Slevin tries to be as independent as possible. Through physical therapy, he has regained wrist function and uses gravity to grasp and hold objects such as a toothbrush and silverware.

Until June, he used a manual wheelchair and needed Morgan to push him into nearly every room of their home because he does not yet have the arm strength to manage ramps on his own.

Then, his insurance approved a power wheelchair, costing about $30,000, which increased his independence significantly.

But the couple say they will have a difficult time achieving financial independence under current law. Fear of reduced benefits makes it much more difficult to plan for marriage or starting a family. “It feels as though we are being punished for pursuing love. I wouldn’t be feeling this punishment if I was able-bodied,” Slevin said.

Slevin said he wants to get married and have children and a career. Morgan said being free of financial worry to focus on his recovery would make her life a little easier.

“I make a choice to be his caregiver every day. It’s out of love. I have the ability to do it. I see caregiving as helping him maintain a quality of life that is worth living, that is accessible and happy for him,” Morgan said.

‘The law is the law’

Valerie Pitaluga was close to giving birth, with the contractions coming every two minutes and the baby’s head crowning as she stood arched over the trunk of her car assembling husband Danny’s wheelchair in the parking lot of Plantation General Hospital in Broward County, Fla.

She was able to get her husband into his wheelchair and deliver their second son, Julian, 15 minutes after arriving at the hospital on May 11.

“Caregiving never stops,” Pitaluga laughs.

But caregiving, combined with motherhood and a full-time job, can be overwhelming without additional support.

When the couple lived in Columbus, Ohio, after graduating from college, they did not qualify for a paid caregiver under state regulations.

The pair got together in 2010, a year after Danny was paralyzed as a passenger in a car accident.

Pitaluga came across his blog, where he updated people on his recovery with details such as learning how to use hand controls to drive and relearning how to text. He included his number at the end of one of the posts, encouraging people to send messages of support. Pitaluga responded and they never stopped talking.

He is 32 now and drives and works as a specialist in human resources for Veterans Affairs, but he cannot dress, cook or tie his shoes without help.

She is a speech pathologist and started taking on caregiving duties so the couple could travel without bringing along an aide. They relocated from Florida to Columbus, Ohio, eventually moved in together, and she took on his care consistently in 2015 in addition to working full time.

Under Opportunities for Ohioans with Disabilities, a federally regulated and income-based plan, Pitaluga was paid $6 an hour for 36 hours of caregiving work per week. Medicare previously paid a nurse to provide the care.

But after the couple married in April 2016, they discovered that Pitaluga was no longer eligible to be a paid caregiver because their combined income was too high.

According to Kim Jump, communications chief for Opportunities for Ohioans with Disabilities, the program will pay for caregivers for people with Danny’s condition provided their adjusted household income is no more than 600 percent of the federal poverty level, about $104,694 for a family of two in 2021.

“They are basically saying if you’re disabled you should live at the poverty line or lower to have your basic needs,” Pitaluga said. “If they were going to use my income they should’ve considered my astronomical student loans and monthly expenses. It’s not like my money goes to Danny.”

At the time, Pitaluga said she had $150,000 in student loan debt.

The pair tried for a year to appeal the decision.

“They told us, ‘I’m sorry but the law is the law.’ To say it was a slap in the face is an understatement,” Pitaluga said.

In the denial to their first appeal, a program official wrote: “I am unable to make an exception on your behalf.”

In his response, Danny said: “Love, relationships, and families are an equal piece of the puzzle in supporting overall wellness physically, financially, emotionally, and socially.” And he added that the couple had contemplated divorce because of the decision.

“We love our husbands and wouldn’t pick anyone else over them, but it doesn’t change the fact that we are the most qualified people to care for them,” Pitaluga explained. “They don’t get as many pressure sores, [urinary tract infections] and aren’t admitted the hospital as often because of us. The government should compensate us.”

She said they are fortunate to have jobs, but Pitaluga being Danny’s unpaid caregiver and a working mother is beyond stressful.

“To say that it hasn’t put a strain on our marriage at times is misleading because he has had to assume responsibilities that I would love to help him with but I have to balance caring for him and our toddlers,” Pitaluga said.

Pitaluga said she struggled to keep up with his medication and therapy, as well as cooking and cleaning. “I don’t stretch him as often as I used to, and we pay the price for that. He falls more, and when he has spasms it knocks him out of his chair,” she said.

In 2019, the couple moved to Fort Lauderdale, Fla., to get support from her mother. “I never wanted to move back to South Florida, but I was in over my head,” Pitaluga said. She feels guilty because her mother has taken over a lot of the unpaid household duties so she can care for Danny and the children.

In June, the couple learned that they were preapproved for the James Patrick Memorial Work Incentive Personal Assistant Services program, a Florida nonprofit program that would help Danny hire a caregiver. Program manager Kristen Harron said spouses are eligible to be caregivers and the program only counts the participant’s income, not household income, to “make it easier for more people to get approved,” she said.

Starting in September, Danny will receive $1,600 per month to pay for caregiving, and his wife will be paid for providing those services.

“It doesn’t change in terms of what I do, but it gives us big peace of mind that we can hire someone in the future. Having that option is liberating,” Pitaluga said.

The couple will put the extra money toward finding an accessible home where Danny can move around better and perform additional household tasks.

Most of the day-to-day responsibilities will remain with Pitaluga. Danny is limited in what he can do to manage their baby son. He does try to take Joseph, 3, to the park every day, but that comes with its own set of worries.

While Pitaluga was cooking on a recent day, she heard knocking at the door and Joseph screaming and crying, yelling, “Daddy fell! Daddy fell!” Danny had fallen out of his wheelchair on a stretch of uneven sidewalk. Joseph helped pushed it back to him, but it was a reminder that the family could use more help.

“Danny never makes me feel guilty,” Pitaluga said, “but I know there are things I was doing when I was financially compensated that I’m not doing now and I worry how that will affect his health long term.”

‘Stopped feeling like a wife’

In 2005, during her freshman year of college, Sarah Santoro Thor remembers working as a server at a restaurant and Michael Thor, the kitchen manager, flicking almonds at her.

“I’m just flirting,” he told her. Eight years later they married. Santoro Thor, now 34, became a marketing manager at a large tech software company and Michael, 38, opened Whiskey Kitchen, a popular restaurant in Raleigh, N.C.

In 2015, Michael’s motorcycle was hit by a car from behind and he went head first into a utility pole. He broke six ribs and fractured one of the highest points on his spine, leaving him with the same injury as the late “Superman” actor Christopher Reeve, paralyzed from the neck down.

Santoro Thor immediately quit her job to care for him. It seemed to make financial sense at the time because specialized care was so expensive. They decided to live off his salary from the restaurant income, even if it meant struggling at times.

Medicare would have offered financial assistance for Michael to live in a long-term care facility, but the couple refused that option.

They received about $90,000 from his auto insurance after legal fees. Sarah said they exhausted that money in the first year.

Michael’s assets made him ineligible for Medicaid-funded aide. Married individuals must have a monthly income below $1,452 and no more than $3,000 in assets to qualify, according to a state’s Medicaid and Medicare spokesperson.

He’s on Medicare, and in North Carolina the program does not compensate spouses for caregiving work.

Some state Medicaid programs do allow paid spousal caregiving in certain situations, but “the number of participants is limited and there is a waiting list,” Katie Armstrong, press assistant for North Carolina’s Department of Health and Human Services, said in a statement.

The couple considered a divorce on paper to enable her to be paid, but they were told by lawyers that it would be fraud.

The costs of managing Michael’s condition were overwhelming. In 2019, the couple took home $55,000 from his business and spent $40,000 on out-of-pocket health care including therapies, medications and massages.

The specialized physical therapy sessions he does three or four times a week to maintain mobility cost $433 per session for 50 minutes.

Santoro Thor said she loves Michael immensely, but she stopped feeling like a wife.

In August 2020 she moved out and they separated.

They hadn’t slept in the same bed since the injury. Michael uses a hospital bed, and it took up to four hours to get him ready for bed. She gave him bed baths because Michael relies on a ventilator and can’t take showers, examined him for wounds, stretched him and put on gloves to help empty his bowels. She set night alarms to turn him to prevent bedsores.

In the morning, she changed his waste bag, fed and dressed him, gently cared for the tube in his throat, took him to all his appointments.

Voice control devices and a mouth stick for his iPad help Michael write, turn on the TV and check the time. But Santoro Thor had little time for herself and didn’t have enough money to pay for her own monthly health insurance.

She said there were several reasons for the separation, but the financial pressures were a major factor.

“We did the best we could,” Santoro Thor said through tears. “I remember floating around my apartment like a zombie, thinking nobody needs me.”

She’s still part of his care team and helps his paid caregivers with medication management and other needs. A couple times a week she brings him dinner and they talk on the phone regularly. “I’ve known him for 15 years; he’s always going to be my family,” Santoro Thor said.

The years-long gap in her résumé has made it difficult to reenter the workforce. She applied to dozens of tech companies and said it was demoralizing to not even get an interview.

To make ends meet, she works two part-time jobs as a nanny and a server.

“Not getting compensated has an effect on your self-worth. I had no success to show for my life,” Santoro Thor said. “I think getting paid would have helped our marriage. It helps give caregivers a sense of value.”