When Caring for Your Child’s Needs Becomes a Job All Its Own

Crystal Watson had to quit her job as a supervisor at the New York City Parks Department because the school that her son, who has severe attention deficit hyperactivity disorder, attended kept calling her “to come get him.” Alicia Chapman, a cleaner for New York City Transit, said she could not take a job for 14 years, unable to trust anyone to properly care for two of her children with special needs. Shanae Williams recently had to enlist the help of her oldest daughter to care for her three youngest children, all of whom have autism, so she could keep her job at a Brooklyn Walgreens.

“These last two years have been the most horrific of my life,” said Ms. Williams, 46, who lives in a homeless shelter in Brooklyn.

Parents of children with disabilities often face an agonizing choice: working outside the home or caring for their children. Either option can spiral a family into poverty or keep them there. Choosing both at the same time can leave some parents feeling as if they are doing neither well. It is a dilemma that the Legal Aid Society in New York has made a priority, taking up the cases of parents who cannot afford lawyers to help them through a complex system of policies and laws.

Ms. Williams’s son, Rasheed, 15, and her twins Isis and Adonis, 10, are nonverbal; the twins are also incontinent. In 2018, they were evicted from their Brooklyn apartment. The cooperative board gave several reasons, among them that Isis, who had been playing with a faucet in the apartment, caused a flood in the building. Shakeema, 26, her oldest daughter, said that she believed that the eviction was illegal and that the faucet was faulty.

After losing the apartment and running out of money for hotels, the family entered the New York City shelter system.

Ms. Williams said she had a hard time seeing a way out, a weight that in turn has affected her ability to press for help. The emotional and physical fatigue parents experience, along with work schedules, makes it more difficult for them to meet with the school officials who make critical decisions on class placements and financial support for special education.

(The responsibility for care most often falls to mothers. More study is needed, but researchers have found that fathers sometimes have difficulty making a connection with their children with disabilities, often leaving the bulk of parental duties to mothers.)

Advocates and researchers say that students from low-income households are more likely to receive inaccurate diagnoses, and then are more likely to be placed in classroom settings separate from other students, than their peers from wealthier households.

Many legal protections and services for disabled children predate the Americans With Disabilities Act. Section 504 of the Rehabilitation Act of 1973 gives children with physical and mental disabilities the right to equal access to education and extracurricular activities. The Individuals With Disabilities Education Act, known as IDEA, was passed in 1975, and provides free public education for eligible children with disabilities up to age 21. A student often loses those services after graduating from high school and then has to navigate college, employment and other services with the assistance of anti-discrimination policies laid out by the A.D.A.

The early years are critical for children with disabilities, and those from low-income households often do not have a level playing field. For example, accommodation (or 504) plans, which are generally used by students with less severe disabilities, are disproportionately granted to students from wealthier families, according to a New York Times analysis of Department of Education data. Such plans can give students extra time on tests used for placement in classes and entrance to college.

Those inequalities often extend into adulthood. The National Council on Disability found that people with disabilities account for about 12 percent of working-age people in the United States, but that more than half of working-age people with disabilities live in long-term poverty. “People with disabilities live in poverty at more than twice the rate of people without disabilities,” according to a 2017 report published by the council.

The Century Foundation, a nonpartisan think tank with a focus on reducing inequality, looked specifically at the disproportionality of IDEA, recommending in a report last year that policymakers require that income status be reported, as a way to better assure that children with disabilities are treated equally in how they are disciplined, identified and placed. IDEA was supposed to narrow the gap for children from low-income households, but they continue to lag behind their peers from wealthier households on assessment tests, the report found.

Susan J. Horwitz, a supervising attorney at the Legal Aid Society (Ms. Chapman is a client), said spirit and intention differed greatly from application. “I love the IDEA, the A.D.A., 504. This is incredible legislation to not discriminate against people with disabilities,” she said. “But if there’s no money support to provide everything? This is not so much the legislation as much as the implementation.”

Ms. Chapman, the New York City Transit worker, has four children, and the oldest and youngest have disabilities. Kevin Spalding, now 20, has behavioral issues, which she described as “disruptive personality.” “He required so much attention that I couldn’t work,” said Ms. Chapman, 46, who said she initially had financial support from her partner. “When I did work, I was so exhausted all the time that I couldn’t do anything with him.”

Ms. Chapman and her partner separated when their youngest son, Kyle Spalding, was 4 months old, leaving her with no income and two children in need of full-time attention. “I had to keep running to the hospital” with Kyle, she said, who is allergic to most foods — so severely that his diet is limited to rice and chicken.

Day care centers refused to accept Kyle, so it became clear that she would not be able to work and that she would have to rely on public assistance.

Through the years, the Legal Aid Society helped her to ensure that Kevin and Kyle, now 15, received adequate educations, at times at private schools.

Kevin is now working for a T-shirt printing company, and Kyle is in high school. With her sons in stable situations, Ms. Chapman was able to apply for the transit job. In October, she got a call that a position was hers if she was still interested.

“Out of nowhere came this job,” she said with joy in her voice. “I’ve never been able to support my family like I am now. It’s job security. It’s so much more. It means independence. It means confidence, being able to carry your own.”

Kimberly Kashefsky, a mother of three in Springfield, Mass., said she missed working outside the home. At one point, she held three jobs. “I would leave a job to go to a job,” she recalled.

That work allowed her the extra money to take her children on weekend trips, or to go bowling or to the movies. When her daughter Mya, now 13, was 18 months old, they learned that she had severe autism. “That’s when my whole life changed,” said Ms. Kashefsky, 44. “I had to make a decision between my work and my children.”

Ms. Kashefsky’s son, Skyler, 16, has attention deficit hyperactivity disorder and a communication disability; he is in a special education program. She said she had to quit her jobs to focus on making sure her children, especially Mya, who is nonverbal and developmentally delayed, were receiving the care they needed.

Skyler said he planned to be an electrician after high school, where he is an honor student headed into his junior year. “Even now, it’s still hard. It’s not over yet. We are trying to help my sister any way she can so that she can live a normal life,” he said.

Ms. Watson, the former New York City Parks supervisor, said she was proud of her job. A 31-year-old mother of three, she had to turn her attention to Michael, her oldest son, who is now 12. When he was in elementary school, she said: “They would call me literally at least about 16 times. I just had to let the job go.”

Her focus turned to talking to doctors, guidance counselors, teachers and administrators. “It’s definitely a job and a half. You just have to give your all to that situation,” she said, explaining that a doctor initially told her that her son was going through “a stage.”

“I researched. I Googled it,” she said. She finally learned that her son had A.D.H.D. when he was 9.

With her son getting medication and proper care at school, Ms. Watson was able to rejoin the job force and now works as a director in an after-school program. “I’m able to meet the standards with my kids,” she said. “I get them the things that are necessary, not the things that they want.”

Ms. Williams, who now works at Walgreens, is still juggling the needs of her children, hoping to one day return to running a personal training business. That job had proved to be too much as she also juggled the needs of three children with autism.

Shakeema filled in the gaps for her mother. “I’ve always helped my mother,” she said. “It wasn’t really a made decision.”

She added that she became a teacher and therapist, studying A.D.A. policies, because “half the time, you can’t get teachers who know what they are talking about.”

Shakeema has a beauty company, but her job during the coronavirus pandemic has been caring for her siblings — and she said that she had adapted. “This is my life,” she said. “I don’t take this as a joke.”

At the shelter in Brooklyn and at another shelter where the family lived before, Shanae Williams has faced angry fellow residents and even staff members, who she said were insensitive to her children’s disabilities.

In the shelter, where the family lives in a single room, Shakeema helped her brother and the twins with their remote learning each day during the school year. She said she knew that they could one day have productive adult lives.

“They are really frowned upon like they can’t do anything. They are marginalized,” she said. “My life looks like me giving them the tools to survive. Wait, I don’t like using that phrase — to survive — because that sounds like life or death. These kids are going to make it.”