Jasmine Benjamin is a mother of two and 5-year-old Josiah is her youngest. She said that early in his life she noticed he had some developmental delays.
When he was about two years old, he was hospitalized with COVID-19. Benjamin said that’s when she talked to doctors about his inability to communicate.
“They gave him the diagnosis of autism in his chart,” Benjamin said. “But he hadn't been officially diagnosed.”
A diagnosis was key because that would qualify him for early intervention services — something about 1,000 infants and toddlers receive each year in Monroe County.
“It took us over a year to get in with Strong to get him evaluated and get his diagnosis,” she said.
As Benjamin waited for the evaluation, she said she struggled to find safe childcare that would meet her son’s specific needs.
“Working with children with disabilities requires a little bit of extra work,” said Bethany Williams, director of special needs and equity at the Child Care Council, which provides resources and training for parents, caregivers and childcare providers.
“If you don't have the competence to work with the kids or the knowledge,” Williams said, “That's where it kind of trickles into the staff is going to leave, or the directors or teachers have to make that decision of asking the child to leave.”
For many local families, finding child care has gotten more difficult since the pandemic — between 2020 and 2022, Monroe County lost roughly 1,700 child care slots, or 6 percent of its child care capacity. Yet for families of children with disabilities, the challenge is even harder to access safe quality childcare.
Right now in Monroe County, there are roughly 25,000 child care slots and nearly 40,000 children who are 5 and under according to Census data and The Children’s Agenda.
While all child care programs are required to provide reasonable accommodation, only a handful have on-site services for children with disabilities.
“At the council, we're trying to approach it from a preventative side, but there's such a need,” she said. “There's one in 36 kids diagnosed with autism. So they're in our community, they're in our preschools, and, you know, teachers need those resources and supports to do the best they can to keep the kids in care.”
According to the American Academy of Pediatrics (AAP), preschool-aged children with disabilities are about 15 times more likely to be expelled from childcare than other children.
The consequences of expulsion can be “dire,” the AAP continues, because children expelled from preschool or child care are 10 times more likely to drop out of high school. They’re also more likely to face incarceration.
And when children with disabilities are expelled, they are less likely to receive critical special needs services to which they’re entitled under the federal Individuals with Disabilities Education Act.
“Child care availability was reduced during the pandemic, and it still is a dire issue that's facing families in New York state,” said Brigit Hurley, chief program officer at the Children's Agenda. “There have been some investments by the state ... and so we've made some progress on childcare. None of that has really addressed the particular situation of families whose children have a disability that often requires more from a childcare program.”
That lack of access to child care and early intervention services can have life-long implications. According to the U.S. Office of Health and Human Services, the first five years of a person’s life affects long-term social, cognitive, emotional, and physical development.
“It's very challenging to find a childcare provider who is comfortable with and equipped to handle caring for a child with a disability, so there's just literally not nearly as many slots as are needed,” Hurley said. “Providers need more support, more coaching, training — often they need equipment or special materials in order to care for a child with disability.”
Benjamin's experience with childcare has been rough. Her first and best option fell through early on. From there her son bounced around from one unviable option to another.
“Even while I was working, I had to move him out of child care because the person that I had taking care of my son wasn't equipped. She was abusing my baby,” Benjamin said. “Hitting him, denying him food.”
She said he’d cry, but she didn’t understand what was happening until another parent withdrew their children from the childcare center. Because Josiah didn’t speak, he couldn’t tell her what was wrong.
Children with disabilities are especially vulnerable to maltreatment and abuse. According to AAP, the rate of child abuse and neglect is at least three times higher for children with disabilities than for typically developing children.
Advocates at The Children's Agenda are pushing for policy changes and state funding to help caregivers like Benjamin and children like Josiah. One of the key focuses is on increasing the industry’s workforce.
"A program that is still experiencing a shortage of workers is often pulling the executive director or the nurse or trying to juggle when they don't have enough staff to meet the childcare ratio requirements,” Hurley said. “They are hesitant to take on a child that might need some extra attention. So that's creating a barrier.”
They also want additional investments toward establishing more safe, inclusive child care programs for children with disabilities. That’s something they hope will improve the quality of life for children with disabilities and their families.
Now that her son has an early intervention plan and is in kindergarten, Benjamin said that things have gotten easier. However, it doesn’t erase the impact of their struggles during Josiah’s early years.
“Every child deserves to be able to have somewhere where they're safe and be able to thrive and be themselves," she said. “Especially having their special gifts be welcomed and received.”
This story is part of Dialogue on Disability Week — a partnership between WXXI and Al Sigl Community of Agencies — in conjunction with the Herman and Margaret Schwartz Community Series.
