Autism and child care: How a lack of quality programs hurts families

Providers equipped to meet autistic kids’ needs are lacking, experts say. Some parents have no alternative but to cut back at work or quit their jobs.

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Kids in SPIN’s autism support preschool classroom work on their motor skills by creating a marshmallow fluff and Cheerio heart craft project. (Kimberly Paynter/WHYY)

Kids in SPIN’s autism support preschool classroom work on their motor skills by creating a marshmallow fluff and Cheerio heart craft project. (Kimberly Paynter/WHYY)

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Four preschoolers sat in a semicircle around a table about knee-high. Teacher Anne McCrane led the children in an activity designed to help them become comfortable with different textures, shapes, and flavors.

“We are making hearts with fluff and Cheerios as an [occupational therapy] project,” McCrane said.

She guided the hand of a boy smearing pink marshmallow fluff on a paper plate in the outline of a heart.

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“Good job!” McCrane said.

SPIN teacher Anne McCrane tosses a preschool student around during playtime. (Kimberly Paynter/WHYY)

In this autistic support classroom at SPIN, an early childhood center in Philadelphia’s Frankford neighborhood, McCrane was getting help with the marshmallow valentines from an occupational therapist. One child also had his own dedicated aide, or “personal care assistant.”

As the kids finished sticking heart-shaped Cheerios to their plates, two assistants guided five other children back into the classroom after an exercise session.

“So you have five staff, nine children — basically a one-to-two ratio,” said Annemarie Clarke, who directs autism services at SPIN.

That ratio is high for a reason, Clarke said: SPIN’s autistic support classrooms serve children who are more developmentally delayed than some of their peers on the spectrum.

“It’s not like you can turn your back for five minutes and feel like everybody’s going to be OK,” she said. “Somebody could disappear, somebody could fall … they could hurt one another.”

Kids in SPIN’s autism support preschool classroom take a play break in the middle of the day. (Kimberly Paynter/WHYY)

The need for extra vigilance is a big reason why it can be especially hard to place kids on the autism spectrum in child care.

About 1 in 59 children in the United States will be diagnosed with autism, according to estimates from the Centers for Disease Control and Prevention. The developmental disorder is often marked by difficulty processing sensory information and learning to communicate and interact socially. Those challenges can make it especially difficult for Philadelphia families to find care for their children. Parents and professionals in the autism field say that a lack of providers equipped to meet those needs often results in children on the spectrum being rejected by child care providers, sometimes forcing parents to cut back work hours or quit their jobs entirely.

“There just isn’t enough affordable, high-quality child care for kids [from] birth to 5 anywhere in this city,” Clarke said. “It’s a citywide issue for all children, that then becomes immensely more complicated when you’re trying to meet the needs of a kid with autism.”

Kids in SPIN’s autism support preschool classroom take a play break in the middle of the day. (Kimberly Paynter/WHYY)

Kids can be kicked out of programs, she said, when child care staff can’t manage the sometimes-difficult behaviors associated with autism. That’s if parents can find centers that will try to accommodate their children in the first place.

Chris Spross, the director of SPIN’s center in Frankford, has first-hand experience struggling to find care for a child with autism. When Spross’ son was in preschool, he attended a program similar to the one at SPIN. But like many preschools, it ran only from 9 a.m. until 3 p.m.

“The difficulty that we had was trying to find a before-and-after care that was able to work with him,” Spross said. “He was thrown out of three day cares.”

Christopher Spross is the director at SPIN in Philadelphia’s Frankford neighborhood. (Kimberly Paynter/WHYY)

Spross said his son’s challenges were too much for most child care programs. He would wander away from caregivers, a tendency known as “eloping” in autism parlance. He was nonverbal and could be aggressive.

“We weren’t sure what to do,” he said. “We had to work, we had to put food on the table.”

Spross’ parents ended up helping out, but it wasn’t a long-term fix. As they aged, they could no longer catch up with the boy when he eloped.

Eventually, Spross’ son qualified for a government-funded home health aide who could give him one-on-one attention after school. (In Pennsylvania, children with autism can qualify for state medical assistance.) The aide still comes over to watch his son, who is now 13, until Spross and his wife get home.

Kids in SPIN’s autism support preschool classroom take a play break in the middle of the day. (Kimberly Paynter/WHYY)

Sometimes, though, parents quit their jobs when they see no alternative but to stay with their kids themselves.

Sharita Cannion, 34, used to leave her 3-year-old son Micah with his grandmother while she worked an early morning shift at an Amazon warehouse. But one morning a few months ago, Micah eloped from the house, which was crowded with several other grandchildren.

“It just was like too scary,” said Cannion, who lives in Mount Airy.

Fortunately, she said, a neighbor found him unharmed. After that close call, Cannion left her job to stay home with Micah. She found one day-care provider she thought could work, but it wouldn’t take Micah because he wasn’t potty-trained. Now, Cannion said, she’s getting by on unemployment benefits and Social Security while she tries to get him into a preschool program for kids with autism.

“My plan … is to do this until he starts that program, and then I can at least pick up part-time work, because I’m not in a position where I can not work,” Cannion said.

That kind of situation is all too common, SPIN’s Annemarie Clarke said.

Annemarie Clarke is a corporate officer of behavior and development services at SPIN. (Kimberly Paynter/WHYY)

Even though many children on the autism spectrum do fine in a typical child care setting with some extra support, Clarke and other professionals in the field said there still aren’t enough programs equipped to work with them.

When these children do find a day care or pre-K program that will accept them, they can receive outsourced therapy and behavioral support services on site through the city’s early intervention programs for children with special needs.

In Philadelphia, Public Health Management Corp’s ChildLink coordinates early intervention services from birth to age 3. During the preschool years, ages 3 to 5, early intervention services are provided through Elwyn.

Sara Molina Robinson, PHMC’s managing director for special education and support services, said a child’s team of early intervention providers will work to resolve any difficulties a day care center has meeting the needs of a youngster on the autism spectrum.

These specialists can provide “modeling for staff in the early childhood setting how to work with that child,” Molina said.

Brie Glover, a Philadelphia speech therapist who provides early intervention services in child care centers, said her job entails not just working with the children, but supporting staff at the centers.

“I’m going to interact with the teacher,” Glover said, “and try to problem-solve ways to help support [the child] so that this child can function in this setting,” Glover said.

Kids in SPIN’s autism support preschool classroom take a play break in the middle of the day. (Kimberly Paynter/WHYY)

If the day care program still isn’t working out, Molina said ChildLink service coordinators will try to help parents find another center more capable of handling kids with special needs. She said they are guided by Pennsylvania’s Keystone STARS quality ratings for child care providers when making a new choice. It assigns a rating from one to four stars.

“The centers that are best able to manage the needs of children with developmental differences would be Star 4 and maybe some Star 3 centers,” said SPIN’s Clarke. (SPIN’s centers earn four stars.)

The problem, Clarke said, is “there just are an insufficient number of those centers around the city.”

High-quality child care centers also tend to be more expensive. Full-time care for a toddler averages $17,500 a year, according to a recent report from the nonprofit Public Citizens for Children and Youth. Working families in Philadelphia are already struggling to pay for care that’s merely average. The PCCY report, “Baby Steps to Improving and Expanding Infant and Toddler Child Care in Philadelphia,” found that only 1 in 4 children receiving state child care subsidies is enrolled in a three- or four-star center.

Glover, the speech therapist, said more education and training for child care workers could equip more programs to care for kids on the autism spectrum. But the low wages paid to these workers could make that difficult to achieve, she added.

“A lot of [centers] have high turnover rates,” Glover said. “Their job is very difficult and they’re not compensated very well.”

Kids in SPIN’s autism support preschool classroom do “center time” where they do independent activities related to their lessons. (Kimberly Paynter/WHYY)

The median wage of a child care worker in Pennsylvania is $9.71 an hour, according to the University of California, Berkeley’s Early Childhood Workforce Index for 2018. Fully 50% of these workers were receiving some kind of public assistance, such as food stamps or Medicaid.

PCCY’s “Baby Steps” report concluded that expanding the kind of high-quality child care required by children with autism can come only with greater public investment. It called on the state to increase child care subsidies so that more providers can pay for the higher costs of quality care.

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