Parents of autistic children in Savannah have few care options

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Yolandria Baynes was in college studying social work when her first child was born. At the time, there was no free space in the daycare she wanted, so she brought her toddler daughter to her internship.

Once Baynes graduated and started working full time, she was able to place her daughter in her godparents’ home daycare, until she found out her child had been diagnosed with the disorder. autism spectrum disorder (ASD).

“I was worried,” Baynes said.

This concern was multiple. With the new diagnosis, she would have to pay for speech therapy and find the right kind of care for her child so she could keep working.

After hearing from friends and co-workers about Kicklighter Academy, an early learning center in Savannah that caters to children with autism, Baynes took the plunge and enrolled her two-year-old. Since then he has been “heaven sent”, she said.

Baynes was able to apply for CAPS (Childcare and Parent Services) scholarships, which covered part of his Kicklighter tuition.

“I was a college graduate at the time, a young parent, working nine-to-five minimum wage,” Baynes said.

With the cost of living constantly rising, she said she could not have afforded this invaluable part of her daughter’s development without the subsidized school fees. Today, due to a policy change in response to the COVID-19 pandemic, CAPS covers full child care costs for children eligible for state funding.

Kicklighter offers ABA (applied behavior analysis) therapy, which greatly benefits children with autism. It is one of only two child care centers in the entire 40-county region of southeast Georgia that offers this level of service for children on the spectrum.

The school accommodates around 15 children with disabilities alongside 84 neurotypical children in what is called an inclusion framework.

“It actually helped her tremendously,” Baynes said. “Now when she goes to kindergarten, I know she’s ready.”

SHORTAGE PUTTING PRESSURE ON EXISTING SPECIAL NEEDS CENTERS

In 2019, the Matthew Reardon Early Learning Academy (ELA) opened to meet the huge need for autism services for young children, marking the second daycare that offers in-house ABA therapy in the 40 county area. . The school, which caters to children from 13 months to kindergarten, is smaller and has about 30 students.

Although other child care centers may accommodate children with special needs (they are required to do so under ADA law as long as it is a reasonable accommodation), they do not provide ABA therapy or n do not hire licensed therapists as part of their staff, so parents seeking treatment must take their child to a separate program or service.

What sets Kicklighter and Matthew Reardon apart from other child care centers is the level of professional care provided within the child care setting, according to Melissa Cole, executive director of Child Care Resource & Referral of Southeast Georgia.

As Cole points out, the relationship between these available resources and the families in need is seriously skewed.

The problem is compounded when “you have to give a child more attention…sometimes (the daycare) will have to reduce the number of students per teacher to achieve that,” says Cole.

According to the directors of Kicklighter and Matthew Reardon, their centers constantly receive calls from neighboring schools that they are not sufficiently equipped to deal with a child with an intellectual disability.

“We get calls all day, saying, ‘I have to move my child in two weeks because they can’t take care of my child anymore,'” says Stacey Davis, executive director of Kicklighter, “And that puts everyone strained world.”

The Matthew Reardon ELA has added a fourth classroom that exclusively serves autistic children on a more severe spectrum, but the demand is invariably still there.

“Our waiting list for autistic children is long and it’s really difficult to have more children,” said Ciarra Torres, director of ELA, who notes that there are about 20 applications on the list. waiting so far.

Some parents come from as far away as Ludowici, a town nearly 60 miles away, so their child can attend their school, according to Torres.

Davis of the Kicklighter School said she is also looking to expand her ability to serve more children with special needs. The school currently employs three licensed behavioral technicians who work directly with students. Davis said he wants to increase that number to eight, but a big hurdle is funding.

“If child care centers could have the proper funding to train their staff, then more child care centers could afford to take in children across the spectrum,” Davis said.

According to CDC data from 2018, approximately 1 in 44 eight-year-olds have been diagnosed with ASD.

“Parents are becoming more aware that early intervention is key and not just waiting to see ‘oh, it’s going to get better,'” Davis said, “what we need, c is more resources to help child care centers be able to manage.”

CONSTRAINT ON PARENTS

Baynes, whose daughter is now five, describes her situation as an uphill battle.

“It’s like being in school again,” Baynes said of all the medical and legal know-how she had to learn. “As a mother of a child with a disability, you have to ask a lot of questions and do a lot of research.”

As her daughter prepares to enter kindergarten in the public school system next fall, Baynes said her biggest fear is bullying and abuse. The mother said she was researching surrounding elementary schools and consulting with her child’s current therapist about the best options.

Once they’ve settled on a school, the next step is to arrange an IEP (Individualized Education Program) meeting where Baynes and the school staff can discuss her daughter’s needs.

Cole, Executive Director of CCR&R, who is also a parent of a child with special needs, knows well the process involved and the challenges parents face.

“It’s like trying to peel an onion and you have to learn ‘Okay, well, I can do this until my child is three, I can get these resources from when my child is between three and 21 years old, and when my child is an adult, I have to go through these stages to get the resources,” Cole explained.

The need for daycare doesn’t necessarily end when the child reaches school age either, Cole points out. She relies on after-school services to continue working full time.

Baynes said she plans to send her daughter to Kicklighter after school so she can continue her ABA therapy there and Baynes can continue working from nine to five. Because her child is not on the severe end of the autism spectrum, she will not be able to receive ABA therapy at her elementary school.

“My goal right now is for my daughter to get all the services she needs,” Baynes said.

INCLUSION CENTERS FACE ITS OWN CHALLENGES

In an effort to improve the quality of child care, state and federal mandates required all facilities to achieve a quality rating by 2022 in order to continue serving children who receive CAPS-subsidized tuition.

Quality assessment criteria cover certain physical standards, enhanced curriculum, and professional development.

Matthew Reardon ELA had taken children on CAPS before the new term. After the policy was changed, the preschool applied for several grants, including the Savannah Economic Development Authority’s Workforce Initiative Fund, in order to achieve grade status, which she received this year.

“CAPS wanted families to be able to choose quality care and the only way to choose quality care was if we were rated for quality,” Torres said.

But it has also put some smaller, less resourced centers in a difficult situation. Torres described the situation as a double-edged sword.

“It was something that we had to think about just because some of their (quality) rules don’t take into account children with autism or children with disabilities,” Torres said, “But at the same time, there’s a lot of children who have a disability who need CAPS and who need additional funding for school fees.

Torres said one of the quality rules requires children to wash their hands for 20 seconds, which can be difficult for children with sensory issues.

“Some of them can’t stand water or the bubbles scare them or the sound of water scares them, so we have to find ways for them to wash their hands for 20 seconds,” said explained Torres.

Davis of the Kicklighter Academy also acknowledged that quality rules aren’t universal for daycares like theirs. Some rules end up going against their care of autistic children.

Davis describes a situation where children have to clean up after themselves before moving on to the next activity, such as mealtimes. According to quality standards, children are not expected to wait long.

When an autistic child is involved, “we don’t want to go and clean the toys for them,” Davis explained. “That’s one of the things we try to teach them – how to transition and prepare.”

There’s a constant balancing act, Davis describes, between meeting the needs of all children. In an inclusion centre, children learn to be patient and to include children of all abilities.

“We do a lot of work here and it’s a joy to work with kids and to be in this position to make them feel safe and want to learn,” Davis said.

But ultimately, to continue doing this type of work, there must be enough resources for these inclusion centers, she said.

“We need funding and training (for teachers). We need to have a meeting with all the daycare owners to ask them, ‘What do you need to take care of a child with special needs?’

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