Quick Read
While early intervention can help children with disabilities succeed in kindergarten and beyond, parents often ride a roller coaster of hopes and frustrations as they search for child care that can meet their child’s needs.
Katie Demko describes her daughter Natalie as a typical “crazy 5-year-old.”
“She loves playing with her friends on the playground and climbing and jumping,” Demko said, “but she has cerebral palsy, so she’s a slow walker and is still learning to talk.”
Demko said she felt a certain relief when she heard Natalie’s diagnosis: Her daughter’s condition had a name, and she had access to disability insurance funds and a team of specialists. Eventually, the family was referred to St. David’s Family and Child Development Center, a Minnetonka-based education and care facility that specializes in serving children with disabilities and developmental disorders. There, Natalie thrived.
“She always says that if we hadn’t come here, she doesn’t know where she would have been as a child,” Demko said.
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Early intervention can help children with disabilities succeed in kindergarten and beyond, but finding child care centers and preschools that can accommodate their needs can be extremely difficult. Parents often ride a roller coaster of hope and frustration as they search for opportunities.
St. David serves more than 4,000 children at its facilities, affiliated facilities and homes in the Twin Cities. There are 2,000 children on the waiting list for services, many of whom will likely reach the age limit before they can secure a spot.
“Serious staff shortage”
Demko’s journey is similar to that of many Minnesota parents of children with disabilities: Staying ahead of their children’s needs can be a challenge.
Even if parents do find a spot, they may face the possibility of being told their child isn’t a good fit: Natalie was pulled out of her first preschool because they were told it wasn’t equipped to care for her, Demko said.
Results from the 2016 National Survey of Children’s Health found that children with disabilities are nearly four times more likely to drop out of kindergarten than children without disabilities.
It’s a statistic that Julie Shodal, director of St David’s Hospital, knows all too well.
“If you think about it, you might have 18 to 20 students in a class, one teacher, one assistant, and kids are running wild in the classroom,” Shodal said. “If two or three kids are behaving in a way that makes them unsafe, they’ll say, ‘we can’t handle this here,’ but that child and their family end up experiencing a failure at school.”
St. David’s Family and Child Development Center, pictured here on Tuesday, June 11, 2024, has a waiting list of 2,000 children seeking services, many of whom will likely reach the age limit before they can secure a spot.
By Kayla Miles | MPR News
This starts a cycle of educational setbacks that Shodal says have a negative impact on a child’s development and social life. In those cases, the feeling of despair he hears from parents is one of despair.
When parents suspect their child isn’t developing normally, they’re often directed to the PACER Center, a Minnesota training and information center for parents of children with disabilities, where they can access resources and tools to help their children. But finding teachers and training can be difficult.
“I think there’s a lack of professional development for early childhood special education teachers,” said Judy Sweat, early childhood education coordinator at the PACER Center. “Part of it is a question of funding. Part of it is a question of time. Since COVID hit, we’ve had serious staffing shortages.”
Due to a lack of training and understaffing, children with disabilities and developmental delays are often mistaken for non-disabled children in the classroom and end up relegated to special education classes where they are unable to fully immerse themselves in school learning.
While Sweatt knows that inclusive classrooms are most beneficial for both students with and without disabilities, there is also debate about what the best way to care for children with disabilities is.
“The goal of special education is always to bring the child closer to the norm, and sometimes that’s where the idea of ableism comes in,” Sweatt says. “Who’s to say that all kids have to look the same or that normalcy is everything, but I think that’s the framework we’ve been living under for so long, and it’s really hard to change people’s mindset.”
“It never goes away”
Joyner Emerick are parents working to change thinking. They serve on the board of directors of the Minnesota Autism Society and advocate for more people with disabilities to be involved in special education development and policy.
Emerick has an 8-year-old son who is autistic and has high needs, and said while some people use Minnesota’s Medicaid program or home visiting to fill the childcare gap for children with special needs, based on her own experience with her own children, that’s not realistic.
“We were doing about 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? I don’t mean that it didn’t serve a great purpose, but that wasn’t the purpose of child care.”
While some insurance plans cover autism centers and offer extended treatment times, some parents, like Emerick, don’t want to send their children to them, leaving them with few options.
Emerick’s decision to homeschool her children came at a cost to her family, who lost their jobs; federal housing vouchers have helped them make ends meet. She said her experiences with doctors and specialists have made it harder to stay connected with her children.
“This system has built a wall between me and my young child from the outside, preventing us from just loving and being with each other,” Emerick said. “It instills fear in me as a parent. It creates an unwanted sense of criticism within me about my child and his development, and that never goes away.”
These are feelings and frustrations shared by many parents of children with disabilities. The journey to getting your child the help they need is rewarding, but never easy.
Katie Demko sits with her daughter, Natalie, at St. David’s Family and Child Development Center on Tuesday, June 11, 2024. “There are a lot of people who could use these services,” Demko said.
By Kayla Miles | MPR News
At St. David’s, Demko said he knows his family is fortunate.
“There are a lot of people who could use these services,” she said, “and if we don’t continue to talk about this, it’s only going to make it harder to get into these programs, because they need that support network.”