Minnesota families struggle to find quality child care for their children with disabilities
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Katie Demko describes her daughter Natalie as a typically “crazy almost-5-year-old.”
“She loves being in the playground and hanging out with her friends and climbing and jumping,” Demko said. “But she also happens to have cerebral palsy, which means that she was slow to walk and is still working on talking.”
When Demko received Natalie’s diagnosis she said it brought a kind of relief. She could now put a name to her daughter’s symptoms and now had access to disability insurance funding and a team of specialists. Eventually, the family was referred to St. David’s Center for Family and Child Development, an education and care space in Minnetonka that specializes in children with disabilities or developmental delays. There, Natalie flourished.
“I say all the time I don't know where she would be as a kid if we hadn't come here,” Demko said.
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Early intervention can help kids with disabilities succeed in kindergarten and beyond, but finding a child care or preschool that can manage their needs is a massive challenge. Parents often ride a roller coaster of hope and frustration searching for an opening.
St. David’s serves more than 4,000 children at its Twin Cities locations, in partner sites and homes. It has 2,000 kids on a waiting list for services. Many will likely age out before they are able to get a spot.
‘Huge staff shortages’
Demko’s journey is similar to many Minnesota parents of children with disabilities. It can be a constant struggle to stay one step ahead of their kids’ needs.
When parents do find a spot, they sometimes face the prospect of being told their child isn’t a good fit. Demko said Natalie was dismissed from her first child care center because they said they were not equipped to care for her.
Results from the 2016 National Survey on Children’s Health show children with disabilities are almost four times more likely to be expelled from preschool than their nondisabled peers.
It’s a statistic St. David’s director Julie Sjordal knows well.
“When you think about it, a classroom of 18 to 20 kids, one teacher, maybe an assistant, and kids with lots going on in the room,” Sjordal said. “If there's two or three kids whose behavior is such that they can't keep them safe, they're going to say, I can't serve you here. But what happens for that child and that family is that they end up experiencing school failure.”
It begins a cycle of educational setbacks that Sjordal says negatively affects that child’s development and social life. In those cases, what Sjordal hears from parents is desperation.
When a parent suspects their child may not be developing typically, they are often directed to the PACER Center, Minnesota’s training and Information hub for parents of children with disabilities. There, they can tap resources and tools to advocate for their children. Finding teachers and training, though, has become a challenge.
“I think there is a lack of professional development for early childhood special ed teachers,” said Judy Swett, Early Childhood Coordinator at the PACER Center. “Some of that comes down to funding. Some of that comes down to having time. Since COVID, we're looking at huge staff shortages.”
That lack of training and shortages means children with disabilities or developmental delays are often misunderstood in classrooms with their nondisabled peers and are then relegated to special education classrooms that don’t allow them to be fully immersed at school.
Swett knows that inclusive classrooms are the most helpful for disabled and nondisabled students, but there’s also debate on what the best methods are for caring for children with disabilities.
“The goal of special education is always to move that child closer to typical, and sometimes that's where that concept of ableism comes into play,” Swett said. “Who's to say that every child has to look the same and that being typical is the be-all and end-all? But I think it's the framework that we've worked under for so long. It's really hard for people to change their mindsets.”
‘Never goes away’
Joyner Emerick is a parent working to change mindsets. They sit on the board of the Minnesota Autism Society and advocate for more disabled people to be involved in special education development and policy.
Emerick has autism and also has an 8-year-old child who has high support needs. Emerick said they see people using Minnesota’s Medicaid program and home visits to fill the child care gap for their child with support needs, which in Emerick’s own experience with their child, isn’t practical.
“We had, like, three hours of direct service a week which was a typical amount of service,” Emerick said. “But that's not child care, you know what I mean? And that doesn't mean it didn't serve a wonderful purpose, but it was not the purpose of child care.”
Some insurance plans cover access to an autism center and can offer extended therapy time, although some parents, including Emerick, don’t want to send their child to an autism center. That leaves few options.
Emerick made the decision for their child to have an in-home education, but at a cost that included job loss for their family. A federal housing voucher helps them manage their household costs. They said their experience with doctors and specialists has also made it harder to stay connected to their child.
“I have now had a barrier to just loving and being present with my child, externally placed between me and my very young baby by this system,” Emerick said. “It creates fear in me as a parent. It creates judgment of my child and their development in me, even if I don't want it. And it never goes away.”
Those are feelings and frustrations shared by many parents of kids with disabilities. The journey to get your child the help they need can be rewarding, but it’s seldom easy.
At St. David’s, Demko said she knows her family is lucky.
“There are so many people that could use these services,” she said, “and if we don't continue to talk about it, it's only going to make getting into these programs harder, because you need that network of support.”