At a glance, Patrick Barron seems like any other 13-year-old boy.
During an outing to the Fresno Chaffee Zoo last month, the gangly Patrick, still not grown into his 6-foot frame, floated around animal cages with a sweet smile, doing things like taking selfies with giraffes and nudging his family along with a gentle but impatient, “Come on, Mom.”
And his mom, Judy Barron of Fresno, will tell you all about Patrick’s many interests, so very typical for his age: Jumping on the trampoline, throwing a football, swimming, playing video games, surfing the Internet, watching movies and listening to music.
But for all that normalcy, Patrick was born with a unique set of challenges that make him anything but typical. When Patrick was nearly 2, he was diagnosed with autism and an unknown intellectual disability.
Family members say Patrick understands what is being said around him and is a great student, often teaching himself things that astound them, but he struggles to communicate and focus.
That is clear standing outside the tiger cages at the zoo. Patrick’s mother grabs his chin and points it toward a large striped cat. He smiles but doesn’t talk without a prompt. Responding to a question, Patrick pauses and says, “Tiger is sleeping.”
“It’s scary to think about what life is going to be like when we’re not here,” says his mother later, watching Patrick walk ahead. “There’s a lot of unknowns. ... If he doesn’t improve with his language and his ability to communicate, anything could happen to him and nobody is going to know.”
Solutions haven’t come easy — for Patrick or his parents.
To help their son, Joe and Judy Barron have spent more than a decade versing themselves in an alphabet soup of special education: a complex web of programs, plans, agencies and laws aimed at helping children with special needs get an education. But even for the well-educated Barrons (Joe is a high school teacher, Judy an attorney), the task continues to be very overwhelming.
Still, the Barrons have learned some things along the way, and they’ve shared that knowledge with many other parents. Joe Barron served four years as chairman of the Community Advisory Committee through Fresno Unified School District, set up in accordance with government regulations for special needs families.
Over the years, the Barrons say they’ve been “pushed and pushed and pushed” to eliminate — rather than add — services for their son.
An ugly word: ‘Encroachment’
The pressure the Barrons feel is not unique.
Joe Bowling, executive director for the central San Joaquin Valley office of the State Council on Developmental Disabilities, based in Fresno, said the push by some to eliminate services stems from a perception that special education takes dollars away from educating children in regular and advanced classes.
“We have two departments of education, special education and regular education, and special ed is always the stepchild,” Bowling said. “They are looked at by a lot of people as users of monies that could be used in other ways.
“The word ‘encroachment,’ which is an ugly term in my book, comes up a lot: ‘Special ed is encroaching on regular education funds.’ We should be one department of education. All children just have different needs.”
But Cheryl Hunt, Fresno Unified’s assistant superintendent of special education and health services, said her district doesn’t separate students into two groups.
“Each child in public school in California is a general education student first,” Hunt said. “To realize this vision, each student who receives special education services should be served in the least restrictive environment with access to the best first instruction in the Common Core state standards.”
Bowling said the thousands of parents he has worked with were looking to get help for their child, not monetary gain. Bowling said legal fights — such as the high-profile settlement in April between Fresno Unified School District and Alice de Alba-Uribe, whose daughter is mentally disabled — are not the norm. After de Alba-Uribe won three administrative law hearings to get her daughter education she never received, Fresno Unified settled an appeal against de Alba-Uribe and her now-adult daughter with a $216,750 payout aimed at covering their attorney fees.
“Fresno Unified should have provided those services,” Bowling said. “What they did to that family was horrible. They (the family) were awarded money, but that money only came after the mother lost her job, her house, was devastated financially, all just trying to get what their daughter was entitled to.”
Sandra Hammond, who has worked as a Valley special education advocate and teaches education policy at Fresno State, said districts should do a better job of working with parents.
“There is this my-way-or-the-highway attitude with school districts. There’s just more money being put towards fighting families than working with them to find the best resources to help kids be productive citizens and as independent as possible — especially when they become teenagers.”
But the Barrons say overall, they’ve had a good relationship with educators. When Patrick was at Holland Elementary School (he now attends Tenaya Middle School), they had monthly meetings to go over his progress that “made all the difference.” Up to 10 people were often present, including school and private therapists and some administrators. But most children with special needs don’t have as much support, said Patrick’s parents.
Hunt said Fresno Unified provides services under 13 different eligibility categories spelled out in the state education code.
Services not provided by a school district can be provided by the state through other avenues. In Patrick’s case, they’ve been coordinated by the Central Valley Regional Center, a nonprofit corporation funded by the state to provide services for people with developmental disabilities.
For a school district to provide special education services, Hunt said, “the disability must result in an adverse education effect, meaning it must impact educational progress and access.”
That definition has created a kind of “hot potato” effect between the school district and regional center, Judy Barron said, with each trying to pass off responsibilities to the other. But Hunt described the district’s relationship with the regional center as a “partnership,” not two groups at odds.
Judy Barron said school staff are sometimes afraid to suggest needed services for a disabled child. “They feel like they can’t say, ‘Your child needs more of this’ because the school district is not going to appreciate that. And I don’t think Fresno Unified is unique in that way.”
Because of that, she said, parents “have to be willing to fight for your child.”
“And if you’re not sure what you’re fighting for, then you have to go to the people who know and you need to talk to the experts” — both inside and outside a school district.
Helping children succeed
The way a special needs student is educated is outlined in an Individualized Education Program (IEP) — a plan that spells out a student’s educational goals and how those goals might be met.
Parents and educators meet annually to go over a child’s plan. The process is a constant source of anxiety for the Barrons.
“The IEP meeting, I compare it to buying a house,” Joe Barron said. “Unless you come in and ask very specific questions, the district’s side of the table will be silent because it’s a process they want to get through. … The tough part for parents is, when you look at goals in the draft IEP, how do you know if the goals are appropriate?”
Judy Barron said an IEP meeting is supposed to be an entire team of people, but for some, it’s reduced to a meeting between two: A teacher and a parent.
What ensues can be intimidating. “Parents, they get thrown all these documents and are told, ‘Here, these are your rights, here’s what you do,’” Joe Barron said.
The Barrons said an IEP meeting should be a collaborative discussion, not a proposition.
“What we really would caution parents about is when you show up at an IEP meeting for your child, and the first thing the district does — or in the first 15 or 20 minutes of the meeting — they hand you a document that says, ‘Offer of service,’” he said. “That’s supposed to be at the end of the process, when you determine, heck, is the service even necessary?
“Let’s talk about present levels (of service). Let’s talk about the goals. Let’s talk about where their (child’s) areas of need are. How can you make a determination about what the offer of service is before you’ve had that discussion?”
Referring to language in the state education code, Judy Barron urged parents to always keep an important question in mind:
“Your child has a right to a free and appropriate education in the least-restrictive environment. As a parent you have to ask yourself, ‘How do I define that?’”
Tips from the Barrons for parents with a special needs child
▪ Discipline at school: A child with special needs should not be severely punished for behavior they can’t control.
▪ Document it: Ask that all communication from a school district about a child be in writing.
▪ Litigation as a last resort: If you feel your child isn’t receiving the proper services or is being disciplined too strictly, engaging in litigation should be a last resort. First, work with school officials and then, if needed, consult with an advocate or legal counsel.
▪ Get help: Have people available for emotional support, and consult organizations and service providers outside your child’s school district.
Make the most of an IEP meeting
▪ Take your time: Parents don’t have to sign an IEP at their annual meeting. They can take it home and look it over.
▪ Consider other experts: School districts have to consider any private assessment of a special needs child.
▪ Bring your support team: Anyone who has a “meaningful interaction with your child” can attend their IEP meeting.
▪ Ask for a translation: If English is not your primary language, you can request your IEP be translated into your native tongue.