By Jenny Gold and Heidi de Marco
Kaiser Health News
WWR Article Summary (tl;dr) 18-year-old Sylvia Colt-Lacayo refuses to let anything get in the way of her freshman year at Stanford. But As Jenny Gold and Heidi de Marco report, making it through each day is physically and financially challenging.
Sylvia Colt-Lacayo is 18, fresh-faced and hopeful, as she beams confidence from her power wheelchair. Her long dark hair is soft and carefully tended, and her wide brown eyes are bright.
A degenerative neuromuscular disease, similar to muscular dystrophy, has left her with weak, underdeveloped muscles throughout her body, and her legs are unable to support any weight. Each time she needs to get in or out of her wheelchair, to leave bed in the morning, use the bathroom, take a shower, change clothes, she needs assistance.
Throughout her young life, Colt-Lacayo has been told her disability didn’t need to hold her back. And she took those words to heart. She graduated near the top of her high school class in Oakland with a 4.25 GPA. She was co-captain of the mock trial team at school, served on the youth advisory board of the local children’s hospital, interned in the Alameda County District Attorney’s Office and is a budding filmmaker. In April, Colt-Lacayo learned she had been admitted to Stanford University with a full scholarship for tuition, room and board.
To move out of her family home and into a dorm, her doctor determined she would need at least 18 hours of personal assistance each day to help with the daily tasks typically done by her mother. As she began to research options, Colt-Lacayo came to a startling conclusion: Despite the scholarship, her family wouldn’t be able to afford the caregiver hours she would need to live on campus. And she would learn in coming months that she was largely on her own to figure it out.
Over the past several decades, medical advances have allowed young people with disabilities to live longer, healthier lives. But when it comes time to leave home, they run up against a patchwork system of government insurance options that often leave them scrambling to piece together the coverage they need to survive.
“On paper I did everything right,” said Colt-Lacayo. “You get into this school, they give you a full ride; but you still can’t go, even though you’ve worked so hard, because you can’t get out of bed in the morning. It’s mind-boggling.”
People with serious disabilities face a frustrating conundrum: Federal and state insurance will pay for them to live in a nursing home, but if they want to live in the community, home-based care is often underfunded.
“We have an institutional bias in this country,” said Kelly Buckland, executive director of the National Council on Independent Living. “The bias is that if you become disabled or old, you need to go someplace else. You need to go to an institution.” Across the country, Buckland said, hundreds of thousands of adults with disabilities could thrive in a community setting if they were able to get the assistance they needed.
Because Colt-Lacayo is under 21, the laws are more generous. Federal law requires states to cover much of the care that she needs to live independently. But the system is fragmented and varies by state, making it difficult even for young people to secure the necessary services.
And once Colt-Lacayo reaches 21, Medicaid coverage of home and community-based care is optional for states. Most, including California, offer some coverage, but even states with broad coverage usually limit the hours they will pay for, or have waiting lists that can stretch years.
THE ‘PEE MATH’ CALCULATION
Colt-Lacayo’s mom, Amy Colt, has been her daughter’s caregiver from the time she was born, alongside her full-time job as a teacher.
It’s a strenuous job, requiring both brawn and delicacy. As Colt-Lacayo has gotten older, she naturally has added weight and height and her muscles have become progressively weaker, making the job of caring for her ever more challenging.
Amy, 57, recently started physical therapy in the hopes of maintaining the agility she needs to help her daughter, even as she herself ages and begins to lose strength.
Colt-Lacayo’s parents are divorced, and while her father is an active part of her life, he does not take part in her daily caregiving needs.
Every morning, Amy begins by lifting Colt-Lacayo to a seated position on the bed. She wraps her arms around her daughter below her armpits, hoists her up and pivots her carefully into her wheelchair.
Colt-Lacayo helps as much as she can by holding onto her mother’s shoulders and trying to bear some weight on her toes, but it isn’t much. As her mother carries her, Colt-Lacayo’s legs hang down like sandbags, heavy and limp. She has more strength in her upper body and is able to complete tasks like eating, brushing her teeth and doing her makeup independently.
In the bathroom, Amy lifts Colt-Lacayo to the toilet, then the shower. To help her dress, Amy moves Colt-Lacayo back onto the bed and rolls her side to side, shimmying her pant legs on a little bit at a time.
It’s a grueling process, and one that needs to be repeated every time Colt-Lacayo uses the bathroom. That plays into something she calls her “pee math”: She avoids drinking water between 9 a.m. and 3 p.m. so she does not have to use the restroom at school. She plans to continue the practice at Stanford, to cut down on aide hours.
Colt-Lacayo still will need help mornings and evenings, not only with bathing and dressing, but also with laundry and cleaning her room. She expects she’ll need to employ somewhere between six and 15 aides, overseeing their schedules and payments.
In a city as expensive as Palo Alto, it can be challenging to find caregivers willing to work for the $14 an hour paid by Medi-Cal.
“Stanford is going to be a culture shock academically. And then she’s going to have to hire and monitor a company of employees,” Amy worries. “That’s going to be a full-time job.”
Still, she is ready to leave home. So, she applied for Medicaid, the only insurance that pays for ongoing personal care for the disabled.
About 602,000 people receive personal care services through California’s Medi-Cal program, which caps the attendant hours it provides at just under 9.5 hours per day. But when a program nurse came to evaluate her, she determined Colt-Lacayo was eligible for only 5.4 hours.
The problem, in part, lies in how the state evaluates how many minutes an aide will need to help Colt-Lacayo with each activity.
For example, Colt-Lacayo needs someone physically available overnight to turn her multiple times as she sleeps, help her use the bathroom and respond in an emergency. That would seem to translate to a shift of at least eight hours. But the maximum amount of time Medi-Cal will pay for turning a patient at night is less than 30 minutes, three turns a night at about 10 minutes a turn. That assumes someone would be willing to work a 10-minute shift.
With the 5.4 hours Medi-Cal was willing to cover, Colt-Lacayo estimated she would need about $2,000 a week during the school year, or $60,000 annually, to cover the rest of her care. It’s not considered an academic expense, so she can’t get a student loan. She started a GoFundMe page and raised nearly $8,000, enough for one month. More recently, a family member offered to loan her money to help with caregivers. She still would be in debt, but it opened the door to her accepting the offer from Stanford.
Eventually, she heard from another student that California has a waiver program for residents with disabilities that could cover additional hours. She and her mom struggled to find information about the program on state websites. They got a copy of the application from another Stanford student, but there was a two-year waiting list.