Caregiver Shortage Forcing Young People With Disabilities Into Institutions
MINNEAPOLIS — Every so often, Korrie Johnson closes her eyes and tries to forget that she is a healthy 25-year-old living in a nursing home surrounded by older people with dementia and other debilitating conditions.
Time and again, reality intrudes. In the past year, more than a dozen of her new friends at the GracePointe Crossing nursing home in Cambridge, Minn., have died of various health problems. Staff wearing hospice badges pass through the hospital-like corridors outside her room. Propped on her pillow is a stuffed animal given to her by a resident just days before his death.
“This is no place for someone my age,” said Johnson, who has cerebral palsy and limited mobility of her limbs. “I love these people, but I feel like I’m missing out on life every day that I’m stuck here.”
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Johnson dreams of living in an apartment of her own, but the bright and outgoing young woman has been forced to put her dreams on hold because she can’t find enough home health workers to care for her at home.
Across Minnesota, a chronic and deepening shortage of home care workers is forcing scores of younger people with disabilities to move into sterile and highly restrictive institutions, including nursing homes and assisted-living facilities, designed for vulnerable seniors. Pleasures that young people take for granted — visiting friends or even stepping outside without permission — are beyond their grasp.
The trend worries civil rights advocates, who say it could imperil decades of effort by state officials to desegregate housing for people with disabilities and to help them live more independently in the community.
Around the state, some 1,500 people under age 65 are living in nursing homes under long-term stays paid for by the state’s Medicaid program. Hundreds more are in less formal assisted-living facilities designed for seniors.
With help, many of these individuals could live at home, hold jobs and lead productive lives, say disability advocates. In addition to impinging on their freedom, the shortage of home aides creates extra costs for taxpayers, because nursing home stays are usually far more expensive than home care.
“This is a civil rights issue,” said Barnett Rosenfield, supervising attorney for Mid-Minnesota Legal Aid’s Minnesota Disability Law Center. “We have too many people in our state stuck in nursing homes who don’t want to be there and have no easy way out.”
Some national disability law specialists say state and county agencies are now vulnerable to legal action. In a 1999 ruling, the U.S. Supreme Court ruled that, unless a nursing home is medically necessary, people have a right under the Americans with Disabilities Act to receive care without being segregated from mainstream society. The ruling, known as “Olmstead,” required states to eliminate unnecessary segregation of persons with disabilities, and ensure they receive care in the “most integrated setting appropriate to their needs.”
In 2016, the U.S. Justice Department determined that thousands of people in South Dakota were being illegally institutionalized in nursing facilities because the state failed to provide adequate services for them in the community. Many South Dakota residents were confined based on disabilities, such as cerebral palsy or multiple sclerosis, that they acquired at birth or at a young age, the Justice Department found.
“People get dumped into nursing homes because there is no community option for them,” said Jennifer Mathis, director of policy and legal advocacy at the Bazelon Center, a nonprofit group that has sued several states over the segregation of people in nursing homes.
In Minnesota, advocates argue that underfunding of the state-supported personal care assistance program is partly to blame. The program was created 40 years ago to help people with disabilities live in the community and today serves more than 40,000 people. But its reimbursement rates have not kept pace with the cost of doing business and the growing demand for workers. Personal care aides typically make $12 to $13 an hour, often part-time and with few benefits.
As a result, even those who qualify for state assistance under the program are often unable to find and retain home health aides who can help them with basic activities like eating, dressing and bathing. As of December, there were nearly 8,000 unfilled home health care jobs across the state — the most in at least 16 years, according to the Minnesota Department of Employment and Economic Development.
“It’s difficult to find quality staff when they can make the same pay flipping burgers at McDonald’s and do a lot less work,” said Carla Friese, 54, of Hopkins, who has quadriplegia.
Prediction comes true
In the spring of 2016, Lauren Thompson delivered a stirring speech at the state’s annual “Ms. Wheelchair” pageant in Forest Lake.
Thompson, who is 29 and was born with cerebral palsy, broke from the event’s normally upbeat program and warned of a “catastrophic crisis,” in which the shortage of support services would leave large numbers of people stranded in care facilities. “Too many people with disabilities live in inappropriate, more-expensive settings, and that makes me so sad I’m speechless,” Thompson said.
Two years later, Thompson finds herself living the crisis she predicted. Unable to secure round-the-clock care, she moved into an assisted-living facility in Champlin, where she is isolated from her friends, family and the political advocacy work that she always envisioned. Her schedule is largely dependent on the facility’s staff, who come and go from her room at all hours of the day.
“I survive here,” Thompson said, “but I want to do more with my life than just survive.”
An aspiring writer, Thompson has begun composing poetry in her head, often as she lies for hours waiting for someone to help her in the mornings. Lying in bed one day recently, she recited verses from one of her poems, “Walking with Words”:
“The many roads
that I cannot travel;
the joys of a moonlit stroll is
beyond my comprehension.”
No other options
Josh Berg is director of program services at Accessible Space, Inc., a nonprofit that provides round-the-clock care at 16 assisted-living facilities across the state. The facilities were designed to provide a “bridge” to help people stabilize before returning to their own homes or apartments. In recent years, however, many people have been staying in his facilities even after they no longer need intensive services.
“With the workforce challenges, they can’t get their needs met in their homes,” he said. “They stay because they have no other options.”
Kim Higgins never imagined that she would consider moving into an assisted-living facility for seniors while still in her 50s. Higgins, who has quadriplegia from a spinal cord injury, had built a network of reliable caregivers who helped her live and work from her small apartment in Hopkins. But her life was thrown into turmoil last summer by the sudden departure of a longtime caregiver.
After a fruitless effort to recruit a replacement, Higgins toured an assisted-living facility in Blaine, but she was turned off by the cramped rooms and lack of independence. Fees there would have consumed nearly all of her Medicaid funds, which meant Higgins would have to give up the wheelchair-accessible van that she used to go shopping and visit friends. She also feared that no one would want to visit her at the facility, and her life would be controlled and limited by schedules set by staff.
“Suddenly the thought of having to live in an assisted-living facility became terrifying,” she said. “You lose a lot of freedom in an institution like that.”
Still, without someone to help her bathe and dress each morning, Higgins had to make a move. Last August, she left the Hopkins neighborhood that has been her home for 30 years and moved three hours away to Marshall, Minn., closer to her sisters and other relatives. The move has enabled Higgins to continue living on her own but has cut her off from the many Twin Cities friends that she made over the years.
“It hurts,” she said. “I miss the barbecues in spring. I miss the Twins games. I miss all the friends who made my life special.”
This week will mark the one-year anniversary of Johnson’s arrival at the nursing home in Cambridge, a move triggered by the sudden illness of her mother, who was unable to take care of her following a serious car crash.
Since her move, Johnson has been afraid to talk to old friends and classmates from Cambridge, fearing their reaction to her living situation.
“There is a certain element of stigma and shame,” she said. “People assume that there must be something seriously wrong with you to end up in a nursing home at my age.”
Johnson still dreams of becoming a schoolteacher one day and has not given up hope of living independently. Last fall, she rented a small apartment in nearby Braham, Minn., which she has prepared for the day when she has adequate home care. She’s already decorated the apartment with her artwork and hand-painted birdhouses.
She looks forward to the small freedoms: waking up when she wants to and making coffee the way she likes it, without someone telling her what to do.
“I can go crazy in my own home,” Johnson said, her eyes widening. “Just imagine — I can be my own person again.”
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