Unmet Needs

A mother's attempts to keep her autistic son in mainstream day care highlight a hole in the system

Mia Madison thinks it would do a world of good for her autistic son, Ethan Johnson, to attend day care with nonautistic children.

Ethan, a bright-eyed 5-year-old who likes watching videos and playing with sparkly toys, already spends a big chunk of his day in kindergarten with other special-needs kids. His mother believes a combined 4 1/2 hours before and after school would be a perfect time for him to be exposed to different children while she's at work.

"I think it's imperative for a child like Ethan to be mainstreamed for a part of his day, to be exposed to typical-needs children," Madison said. "He's in an autistic kindergarten classroom, so he's only with autistic children all day long, and then before and after school, if he goes to a special-needs facility, then he's still with other people with special needs. Special-needs people are great, but I think they also need exposure to typical-needs people. We also feel it's important to typical-needs children to be exposed to special-needs children to develop tolerance, to develop acceptance of someone who's different from them."

Unfortunately, Madison says programs offered by organizations like the YMCA, which provides day-care services at her son's eastside school, aren't accepting of children like hers.

Despite increasing rates of autism--one in 150 births will produce an autistic child, according to the Centers for Disease Control and Prevention--and despite passage of the Americans With Disabilities Act, which prohibits discrimination against children with special needs, trying to find day care for an autistic child can be monumentally frustrating, parents and officials say.

Madison initially tried to enroll her son at the YMCA before-and-after-school program at his elementary, which was ideal, because he didn't need to be transported anywhere. At first, they refused to take him, citing his lack of potty training, according to Madison. But she said she pushed the issue, and they admitted him.

However, she said they soon told her they wanted him gone by October, because he required individualized attention that wasn't provided for in the YMCA's budget.

According to Madison, Margie Ellis, the child-care director for Ott Family YMCA, informed her that in 25 years of experience, she had not dealt with an autistic child.

"So her staff is pretty sheltered, I think--sheltered from dealing with a special-needs child," Madison said, adding that she knew of only one other special-needs child in their care.

Cris Ciasca, chief financial officer for the YMCA of Metropolitan Tucson--who the Weekly was referred to when we attempted to reach Ellis--said her organization doesn't track how many special-needs children are in their care.

"The YMCA is open to any child," she said. "We're a licensed program. We take any child into our program, and we try to accommodate the needs of the child."

Madison said she and her boyfriend, Chris Jensen, volunteered to personally help establish routines that would make caring for Ethan easier. She also contacted the Blake Foundation, a nonprofit organization that provides services for special-needs people. They offered to train the staff at no cost to the YMCA--but all her overtures came to nothing, she said.

Ciasca disputed that claim. She said the Blake Foundation made numerous visits and that every attempt was made to accommodate Madison's son, adding that they have in the past brought in trainers from other organizations to meet the needs of children who require special care.

Madison did acknowledge that the Blake Foundation evaluated Ethan to make recommendations to meet his needs, but she said they either weren't implemented or were implemented in a halfhearted way.

According to Madison, YMCA personnel claimed that making some of the changes would "fundamentally alter the nature of the services provided," which, under Title III of the Americans With Disabilities Act, is a valid reason for denying services to people with special needs. It should be noted that the ADA provides for equal access to services, not additional services that aren't available to typical-needs children.

In all, Madison said they asked the YMCA to make 29 "small accommodations." These included moving tables to give the illusion of an enclosure, because Ethan was prone to trying to leave the facility, and setting up a schedule to provide structure--something that's important for an autistic child, she said.

"Basically," she said, "they were being kind of steadfast, digging their heels in and saying, 'We can't accommodate. It's too much. It's too difficult.'"

Madison, however, was also refusing to budge. "In October, when they wanted him to leave, I kept him in there and waited for them to basically give me notice, which they never did, because, legally, they can't," she said. "They have to try to accommodate."

Madison threatened the YMCA with legal action after a meeting a few weeks ago in which she said day-care staff once again told her they wanted Ethan out, because he was impinging on the care given to other children.

Ciasca said she couldn't comment on Ethan's specific case, but did say that the YMCA only makes a determination on whether a child should be pulled from a program after staff has consulted with parents, and the child has gone through a trial period.

"I have to add that we're not equipped to give clinical or therapeutic levels of support," she said.

Regardless, the months-long struggle has finally reached a conclusion of sorts, as Madison recently pulled Ethan from the program in favor of one that's tailored to special-needs children.

"My position as a parent is to advocate for my son, but what I see is a lack of community support and ignorance," she said. "People don't know how to deal with autistic children. Not only do they not know, but they don't want to know. If they can make you go away, then they can continue to be sheltered from it."

There are currently 509 children in Pima County receiving state aid who have a primary diagnosis of autism, and another 81 who have a secondary diagnosis coupled with another disability, said Rick Zaharia, district administrator for the Arizona Department of Economic Security's Division of Developmental Disabilities, which provides services for autistic children. Speaking generally, he said there are systemic snags for children like Ethan when it comes to child care.

"The issue with child care ... is the same as it is in the schools in that, increasingly, schools are being asked to serve and teach these types of children," he said. "They're not always prepared; they don't always have the specialized resources. There may be only one in a group of 1,000. All of us in the business are learning more and more about serving these children, and it's in progress for all of us." He agreed with Madison that's it's best to "mainstream" autistic children as much as possible.

Peter Earhart, president of the Pima County chapter of the Autism Society of America, said trying to find suitable child care is an issue he hears about all the time.

"I think at a certain point, most parents just stop trying," he said. "They just don't do what other people or other families might do where there is child care involved, because of the difficulties. ... It's a lot of work, and, unfortunately, I think it goes against the grain a little bit still on what people's expectations are for child care.

"So if you do have a child with autism, and you're looking for day care, then you're probably going to have to look quite a bit. It's just not easy to find."

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