Laura Cohen works the special education system like the veteran that she is. The former social worker can rattle off a host of tips for parents navigating this new terrain and characterizes her own life with three kids who have special needs as “no big deal.”
But things weren’t always so straightforward. Ten years ago, Cohen and her husband Andrew were staring down the barrel of a court case in Maryland over whether their then 2-year-old son Ben, who has pervasive developmental disorder not otherwise specified (PDD-NOS), should be eligible for special education services.
Specifically, the North Richland Hills family came to blows with their former public school’s admission, review and dismissal (ARD) committee.
Cohen’s voice clutches and rises as she recalls the volatile situation. “We had an ARD meeting where [the committee] told us that our son would never talk, would never learn, never be able to do anything,” she shares.
The Maryland ARD committee concluded that speech therapy would be “wasted” on Ben, but the Cohens weren’t having it.
Heading to court seemed like the next logical step, but the couple continued searching for common ground with the committee. “Even at that point, we didn’t walk out because we wanted him to have services,” Cohen explains. Their persistence paid off. With the help of a professional ARD advocate, the Cohens got Ben approved for therapies and he quickly began to show progress.
Now, at age 12, Ben’s preparing to lead a two-hour prayer at his church and is excelling in school.
As Laura Cohen has learned, getting children the educational services they’re entitled to is often a matter of knowing how and what to ask.
“I think that parents just don’t realize that they can disagree and ask for things,” insists Greyson Fletcher, an ARD advocate from Keller and a father of five children (two of them on the autism spectrum). “It’s a negotiation process by nature and, a lot of times, parents don’t realize that until they’re knee-deep in it.”
Federal laws guarantee children with special needs an appropriate public education that serves their individual needs. Determining what those needs are and how they’ll be met is a matter decided by a local ARD committee that pulls together all the key players in a child’s special education planning and care: general and special ed teachers, administrators (often the school principal), therapists (occupational, speech and other specialties), diagnosticians and, of course, parents.
As with many things bureaucratic, the system can be cumbersome, intimidating and difficult to navigate, presenting a steep learning curve for parents new to the process. The good news is that there are resources, such as ARD advocates, that can help parents understand and negotiate their way through the ARD process, easing them through the chaotic early days and into the kind of well-adjusted lifestyle enjoyed by families like the Cohens.
IDEA rights and protections
When the Cohens first ran up against an ARD committee, they weren’t familiar with the laws that protect children with disabilities with some of the strongest safeguards in the educational system. The Individuals with Disabilities Education Act (IDEA) guarantees a free, “appropriate” public education for children from ages 3 to 22. Children identified with one of 13 disabilities who need special services in order to make progress at school are assigned Individualized Education Plans (IEPs) designed to meet their specific needs.
While every state offers programs that meet minimum standards, each interprets the law slightly differently, providing services to children in a different way. (See sidebar for a breakdown of Texas’ interpretation.)
As the Cohens discovered, what the school system determines is an appropriate education can be entirely different from what parents think is right for their child, leading to notoriously intense negotiations.
Parents tend to believe their kids are capable of much more than the school assumes, Fletcher says, yet parents often don’t witness the same difficult behaviors at home that their children show at school. “The way it comes out is there is always a recognizable, tangible disconnect between the way the school sees the child at school and the way the parent sees the child at home,” he explains.
For the Cohens, overcoming that disconnect was a matter of getting Ben started with special services so that therapists would also recognize his potential. But this sort of give-and-take process only works when parents understand their options and are willing and able to negotiate.
IDEA is designed to help parents and educators determine what types of services are appropriate for children with disabilities by providing an evaluation at no cost to the parents. Parents whodisagree with the outcome of the school’s evaluation can request an independent evaluation at the school’s expense, and that evaluation is guaranteed to carry equal weight.
If the assessments show that a child will need special services in order to make progress academically, an IEP is developed to help the child reach specific goals. Parents have the right and responsibility to participate in the creation of their child’s IEP and must consent to the recommended programs and services.
However, if parents don’t feel the plan is providing the appropriate or necessary services, they have the right to challenge their child’s treatment or remove the child from the special education program.
“I think that sometimes they don’t understand that they do have rights,” Fletcher says of parents. “They can disagree with the school district. It’s OK. Yes, the school administrators are experts, but you can disagree with them.”
Because so many disabilities can be improved with early identification and intervention, it’s important to note that IDEA extends to children with special needs before they reach school age.
IDEA governs other important rights parents should know about. It mandates that children with disabilities should be educated alongside their peers without disabilities whenever possible and at the school closest to their home. It charges the school system with the responsibility to locate, identify and evaluate children in need of special education services with a principle called Child Find. And it also governs alternative placement options for students who have trouble with weapons, drugs or violence.
Finally, some children with disabilities receive accommodations under Section 504 of the Rehabilitation Act of 1973, which deals with physical access and accommodations. It guarantees that children with disabilities have equal access to educational services comparable to those that typical children are receiving. Section 504 protects children with typical learning capabilities who, for example, use a wheelchair, have cerebral palsy or are under a doctor’s care for depression.
A process, not a service
If IDEA’s protections are so strong, why has lining up appropriate services for children with disabilities become notoriously fraught with conflict?
Fletcher has seen the stress from both sides. Like Cohen, he and his wife hired an ARD advocate to guide them through their own first encounter with IEPs and ARDs, including the tsunami of research, therapy appointments and details that go into getting a child started in special education. (Later, he became an ARD advocate himself.)
But their level of involvement is not the norm. What truly makes ARDs so difficult? The collaborative nature of the process: Many parents don’t realize they play an integral part until it’s too late.
Turns out not showing up for the meeting is a problem for many families. Doug Brooks, Dallas ISD’s special education compliance supervisor, says that while more than half the parents of elementary school students participate in their children’s annual ARDs, involvement drops off in middle school and even more by the time students have reached high school.
“I see more progress in students whose parents are involved, who stay in touch and come to the ARDs, reinforcing what’s happening during the school day,” stresses Brooks. That progress is much less likely to happen if parents don’t know what their child’s educational goals are and aren’t involved in making them happen.
Parents shouldn’t expect to coast in neutral gear, while the school team lines up every service the child’s doctor might have recommended, Fletcher says. Parents need to dig in to understand and actively advocate for their child’s needs.
When parents don’t attend ARDs, the school sends home summary and consent forms for recommended treatments and services. Even so, many parents end up not understanding their child’s services or failing to continue the work at home, says Sylvia Bougacha, LMSW, a special education social worker at the DISD Special Education Parent Intake Center.
“It’s just out of sight, out of mind,” she laments.
That’s why the DISD Special Education Parent Intake Center has launched a new series of workshops designed to teach parents the ins and out of ARD.
Some parents don’t feel ready to attend ARDs, because they’re still working through the emotional aspects of accepting their child’s special needs diagnosis, Bougacha acknowledges. “It’s like a shattering of dreams,” she says. “This changes your whole scenario and what you were preparing for.”
Adds Fletcher, “It’s always emotional when it’s your child involved, because you’re always going to disagree with something that somebody says, or you’re going to take offense at the way somebody says something about your child, just because it’s your child.”
Cohen concurs, admitting that while educators try to offer both positive and negative feedback, the sad truth is that sometimes there’s only negative feedback to give.
If parents feel the system isn’t working in their child’s best interests, IDEA covers their backs with several routes to resolve disputes. Texas Project FIRST, a resource website created for parents by parents under the auspices of the Texas Education Agency (TEA), advises parents to turn first to the person directly responsible for their child’s services and then work up the school system’s chain of command.
Beyond the local level, the TEA offers four options for resolving conflicts. Parents can file a formal complaint with the TEA. They can request mediation and attempt to work out differences without going to court. They can request a resolution session — a new, last-ditch method before taking matters to a due process hearing. Or they can take matters to a due process hearing with a hearing officer and attorneys.
Do the homework
The services available to your child depend on your child’s diagnosis. So it’s important to get the right diagnosis from the beginning, Cohen stresses. In addition, parents need to make sure the program designed for their child is truly individualized and appropriate (not a cookie-cutter program created for general use), so that the child can make real progress toward specific goals.
Word of mouth is your friend, Cohen advises. Ask other special ed parents what services are available in your school system. Volunteer at the PTA to stay on top of issues that could affect your child. For example, when she heard the principal chatting about middle school transitions, Cohen realized she needed to set new goals in an upcoming ARD designed to help her fifth-grader adjust to changing classes.
And perhaps the most critical tip? Get everything in writing. “If it didn’t happen in writing, it didn’t happen,” cautions Fletcher.
In the end, the basics of shepherding a child through the special education system aren’t entirely different from the routine parents of typical children follow to keep tabs on their young students. Bougacha compares the mantra that mainstream classroom teachers tell parents with what she and the DISD Special Education Parent Intake Center staff tell parents of children with disabilities: “The schools say make sure your child gets to school, does his reading and does his homework. We say make sure you get to your child’s ARD, know your IEP and communicate with your child’s teacher on a regular basis.”
Today, all three Cohen children receive special services. Ben is thriving in a self-contained classrom and receives speech and occupational therapy. His 7-year-old brother Alex was also diagnosed with PDD-NOS, and his 6-year-old sister Julia has a learning disability. Things get easier over time, Cohen assures, as parents get informed and stay involved.
“Even if you feel confused, just the fact that you keep coming and keep showing you’re interested and willing to work makes things easier,” she assures.