CLEVELAND, Ohio — Finding high-quality, affordable child care is hard. Just ask any parent. But when a child has special needs, child care suddenly gets a whole lot harder — for parents and child care providers alike.

A child in a wheelchair requires a caregiver who is physically able to lift them in and out of the chair. One with a speech or language disorder may need a caregiver who knows how to operate their speaking device.

Other children may have developmental delays, or sensory issues that require additional patience, understanding and training on the part of the caregiver, or more assistance with basic skills like feeding, dressing or toileting than their same-age peers.

Yet, how do parents find the right caregiver for their child with special needs? Or get their children the best services?

There are federal rules against discriminating against children with disabilities. But the line can be blurry between a disability and what might be considered poor behavior, especially if there has not been a diagnosis. And there is the practicality of what a child care center is able to provide.

An effort to widen the options

A possible step forward in Ohio came this past fall when Gov. Mike DeWine announced the creation of a program designed to increase access to quality child care and support services for children with special needs.

The PROMISE program, which stands for Ohio Promote Resources, Opportunities and Meaningful Inclusion through Support and Education aims to meet that goal by credentialing special needs caregivers, offering specialized training and support, and giving them a special designation in the child care database at childcaresearch.ohio.gov so that parents can easily find them.

Grants were also offered to child care centers, and individual child care scholarships are available to parents of kids with special needs at or below 200% of poverty level.

“We’ve heard from families across the state regarding their struggle to find quality child care for children with special needs,” DeWine said. “Providing training and a new provider credential, as well as program designations signal to parents where they can find child care prepared to include all children.”

A mid-December search of the database found that out of 131 five-star rated child care centers in Cuyahoga County, 39 had received the Inclusive Child Care Program designation, or ICCP, indicating that the staff has earned the Professional Early Childhood Inclusion Credential to care for children with special needs.

According to the governor’s office, the Early Childhood Inclusion Credential “will provide training and support for early childhood educators to create an inclusive environment for all children by increasing their knowledge, competency and confidence when working with children with special needs and their families.”

In practice, what this means is the center administrator and one teacher completes five hours of additional online training with a focus on special needs inclusion, plus three self-study reading assignments, said Joan Hamm, who is the executive director of Children First Childcare of Cleveland, located near Tower City, one of those five-star centers with the new inclusion credential.

“We did it as a group with myself and two veteran teachers,” said Hamm, who said the center had hoped that by completing the training the center would also be eligible for additional funding to help hire and train staff.

“We were told there would be extra funding available to us,” Hamm said. But the available money ran out before Children’s First could get a share, Hamm said.

“It’s challenging because we could have children with medical special needs or they could have developmental delays, or they could also have behavioral issues,” said Hamm, who says around 30% of the children she works with have some kind of diagnosis.

“We work with typically-developing children. But sometimes we have a child that doesn’t seem to be hitting those benchmarks, but that’s not within our area of expertise — and that child may or may not be diagnosed and so sometimes we have to be the person who gets the resources for the family.”

In Cuyahoga County, Hamm said places like Starting Point, Applewood and Beech Brook — centers dedicated to helping children with special needs — serve as free consultants to child care centers and are paid by grants from the county program Invest in Children.

For example, Children First Childcare uses the consulting services of the Achievement Centers for Children for children who have physical of cognitive developmental delays.

“If we have a concern, we can contact those folks free of charge and they can help make the classroom more productive for the child and can give us additional resources in the community,” said Hamm.

That said, services are limited.

Hamm says the center is lucky to get the services of a consultant for an hour every two weeks. Meanwhile other specialized, high-demand services that a child might require outside the classroom, like speech therapy, physical and occupational therapy, have waiting lists so long it’s nearly impossible to get the child an appointment.

“I always say they’ll graduate from high school before we can get (speech therapy) services for them,” Hamm said. “It’s our biggest crisis in helping kids stay in care.”

The other challenge for caregivers like Hamm is that they are often the first to notice that there’s a problem. Not only do they take on the role of social workers connecting the family with available resources, but they are often the ones helping the parents come to terms with the fact that their child may need special services.

“We don’t necessarily get a child who comes into care where somebody says, ‘Wow this child has autism so will you take this child;’ it’s not that clear,” Hamm said.

“What I have to do a lot of is help parents get to understanding that their child may have a disability, but that doesn’t really change things, you know? They are still going to be welcome in our center. They are still going to have the potential to grow up and be healthy individuals, especially if we get them early intervention.”

One family’s struggles

All this may work well for young children in day care centers, but as children get older, they can become harder to manage, and the special services they need, including child care, can get more complicated.

The need for day care doesn’t stop at a young age for many children with disabilities.

That’s something Ingrid Nolan, a North Olmsted mom of twins knows well. Her boys, Brandon and Seamus, are 19 now. Brendan is attending college, but his twin brother, Seamus, who has severe autism, lives at home and still needs a round-the-clock caregiver. For most of his life, that caregiver has had to be his mom or someone else in his family.

Nolan had success with regular sitters and child care in the early years, but once when the boys were 7, she says she was told her son, Seamus, could no longer attend the child care center where she worked because of his behavior.

Despite offering to pay for a behavioral therapist to come in and work with the center staff to help solve the problem, she said the center refused to have him back, and rather than fight it, Nolan decided to move to a different location where they were welcome.

According to the Americans with Disabilities Act, child care centers are not allowed to refuse to accept children because of a disability.

But they can decline care if they can demonstrate that the child poses a direct threat to others, or if providing an accommodation would pose an undue hardship on the provider, or fundamentally alter the nature of the program, which is what Nolan says the center tried to do.

“It was infuriating and it was really upsetting” Nolan said.

Later she relied on camps like Camp Cheerful for respite care, and babysitters. But finding the right fit can be hard.

“He gets obsessive about certain things. He won’t stop hugging you, or he’s obsessed with your hair and won’t stop touching it aggressively,” Nolan said. “The best are usually young adults who have a sibling with autism — “They’ll say, ‘my brother’s favorite thing is ceiling fans,’ and for Seamus its vacuum cleaners, so you know, they get it.”

Having a child with severe disability, and not having access to consistent child care has definitely impacted Nolan’s career trajectory. She said the cost of paying for his care was regularly the same or more than she could make working.

“Career? No. I’ve had several jobs, but I’ve never had a career,” said Nolan, with a sigh and a shrug. “But that’s just the way it is. If it’s a random Thursday night and my husband is out of town, I don’t want to pay a sitter so I can work, you know?”

Certainly, if the demand for services and financial resources is any indication, Nolan is not alone in her struggles.

Take the case of Shirly Hill. One child has been diagnosed with ADHD and the other with autism. Hill says getting them the diagnoses and the services they needed was a daunting and frustrating process, even after she and the children’s preschool teachers recognized there were issues.

“I hear from so many people that their concerns were dismissed,” Hill said, noting that she felt lucky to have been able to navigate the process on her own. “It’s very community dependent. I feel like for a lot of parents who don’t have the same resources as I did, the process would be near impossible.”

Both kids participated in Avon Lake’s peer model preschool program. Her son with autism was able to receive occupational and speech therapy through the school system. But when it came to getting him other services he needed to function at home and out in the community, she found herself on waiting lists for six months or more. In one case she’s still looking.

“It was recommended that we find him a developmental pediatrician that specializes in autism, and we’ve never been able to find one in this area,” Hill said.

Hill, who also works as a preschool teacher, has watched others navigate similar challenges. She says it’s hard to see kids and families struggling and know that you simply don’t have the skills or resources required to help lighten the load.

“I would say there’s a much bigger need than what people realize and I don’t think Ohio is meeting those needs as well as they could be,” said Hill.

“It is wonderful to have inclusion, but the supports need to be there, and most private preschools or daycares do not have the intervention specialists, speech therapists, behavior specialists, or physical/occupational therapists on staff — so it ends up not working out well at all. Or at least not as well as it could.”

And that often means that kids who really need the help, get left behind.

“We’re very welcoming but it’s a constant struggle,” said Hamm. “Teachers have to learn different techniques from what we’ve learned as early childhood educators. And still, because of lack of services and long waiting lists, they don’t get the help they need to support them staying in child care.”

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