By Jenny Gold, Kaiser Health News.
Photos by Heidi Marco

OAKLAND, Calif. — 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, Sylvia 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, Sylvia 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, Sylvia 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 Sylvia. “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 Sylvia 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 Sylvia 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

Sylvia’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 Sylvia 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.

Sylvia’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 Sylvia 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.

Sylvia 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, Sylvia’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 Sylvia to the toilet, then the shower. To help her dress, Amy moves Sylvia 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 Sylvia uses the bathroom. That plays into something Sylvia 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.

Sylvia 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, Sylvia 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 Sylvia, she determined Sylvia 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 Sylvia with each activity. For example, Sylvia 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, Sylvia 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.

There are 3,603 Californians on the waiver, with another 1,970 on the waitlist, according to the California Department of Health Care Services.

DHCS recently announced it would prioritize enrollment for people under 21. For Sylvia, it has paid off: A few weeks after applying, she was evaluated by another nurse, who recommended an additional 11.4 hours a day. She learned last week the recommendation had been approved.

“You have to fend for yourself to find this information,” Sylvia said. “So many people don’t end up achieving their goals because they don’t know how to get the care they need. We are so vulnerable.”

The Debt That Lies Ahead

Despite the complex process, California is generous compared with most states. For example, Arkansas, which also offers a waiver program, caps the number of hours at seven per day. “People probably aren’t getting enough care hours in Arkansas to even consider college,” said Kevin De Liban, a legal aid lawyer in the state.

Wendy Harbour, who directs the National Center for College Students with Disabilities, said the problem is “extremely widespread.” She has worked with students who have had to drop out of college because they couldn’t get the care hours they need. Sometimes a family member will move into the dorm with them.

Other students risk their health by skimping on care hours. “They won’t take their medications, or have the catheter changed or their colostomy bag emptied,” said Harbour.

The real issue, she said, is that college students with disabilities aren’t on the radar of policymakers. “When people imagine those on Medicaid, they imagine people stuck at home or maybe elderly — not people who are getting up in the morning, going to classes and attending internships over the summer to get a high-powered job.”

Legislation introduced by Senate Minority Leader Chuck Schumer and House Rep. Jim Sensenbrenner (R-Wis.) that would require states to provide services enabling people with disabilities to live in the community remains stalled in the House.

Jane Perkins, legal director at the National Health Law Program, said schools like Stanford, with its $26.5 billion endowment, should help students pay for the care they need to live on campus. “It’s just, where do you want to put your money?” she said.

Stanford has an office dedicated to supporting students with disabilities and making the campus accessible. Among other services, it provides classroom aides to assist with note-taking, transcription and lab work, as well as specialized technology.

In an emailed statement, Stanford spokesman Ernest Miranda said that the Americans With Disabilities Act does not require universities to hire, coordinate or pay for personal care, and that such decisions are “highly personal” for students.

A few schools, including the University of Illinois at Urbana-Champaign and Wright State University in Ohio, have special programs to help train and employ personal care aides, though they require students to pay through state programs or out-of-pocket. Such programs have become meccas for students with disabilities.

With the approval of additional hours of care through California’s waiver program, Sylvia will need to come up with funds for one more hour of care daily to reach the 18 she needs. She also expects to have to supplement the hourly Medi-Cal rate. By her calculation, that will total about $2,000 a month.

It’s an expense that won’t disappear when she graduates.

“I’m 18, but I’m going to be facing this for literally my entire life,” she said. “This isn’t only four years. This is a debt that will follow me forever.”

Kaiser Health News (KHN) is a national health policy news service. It is an editorially independent program of the Henry J. Kaiser Family Foundation which is not affiliated with Kaiser Permanente.