Advocating For Children With Special Needs

advocating for children with special needs

In her previous life, Shelly Milstein was a litigation attorney logging long hours on behalf of her corporate clients, routinely drowning the opposition in paperwork long before they reached their day in court. Working on behalf of insurance companies, her job was to hold tight to her clients’ purse strings and resist unnecessary payouts. It’s been nearly eight years since Milstein left that line of work. These days, she still works long hours on behalf of her clients. And the goal is still to reach a mutually agreeable resolution outside of court. But in her current gig, the stakes are higher, less easily monetized, and the work is personal, advocating for children with special needs.

Milstein is a New Jersey mother of three children, two with special educational needs. She describes her professional journey from insurance litigator to special education legal advocate as an organic process. “I became more and more involved in the special education community and saw the need for good [legal] representation for the families involved. I love it because it’s near and dear to my heart. It’s rewarding work, helping families navigate the system.

It is one of those jobs that you might not know exists until you meet someone who does it. It’s only then that it seems like an obvious, inevitable specialty. For parents of special needs children, Milstein and her peers provide invaluable support and counsel, helping them to negotiate a thicket of state and federal law, special ed theory and practice, and the protocols of public education access.

Although the scope of Milstein’s work on behalf of a client can eventually bring her to court, the goal throughout the process is to find a mutually agreeable resolution long before a court date is set. Relying both on skills honed in her litigation career and the experience of a parent of special needs students, her role on behalf of a client is often a hybrid. “I take an advocate role at first, and that can later morph into a traditional attorney/client representation. I try to help families ‘behind the scenes’ as much possible, without wearing a lawyer hat. Teaching them how to write a letter [to the schools] for what they want, pointing them toward various programs and professionals that might be appropriate for their child.”

Milstein says her first job when working for families of special needs students is to “help them know their rights, know what to expect from the process [of securing appropriate educational services], and help them find resources that can help them through that process.” Some families arrive in her office unaware of what their child is entitled to under federal education law. Others are well informed, but struggling to secure services from their school district. Still others are simply looking for financial relief on nuts-and-bolts issues like transportation costs or technological accommodations.

At the outset, Milstein’s action plan is to help a  family work collaboratively with their school district to “every extent possible,” rather than assume an adversarial position. In this collaborative spirit, she generally prefers not to attend IEP meetings, although she does prepare her clients for those sessions, in which parents, educators, administrators, and specialists sit down to discuss the educational plan for a special needs student. As she describes it, “You’re facing a team of professionals who are supposed to have your child’s best interest at heart, but realistically they have budgets, other agendas, and community concerns to consider.” In this context, the presence of an attorney can suggest an “us vs. them” dynamic that may taint a productive atmosphere.

Although her preference is to avoid courtroom conclusions because of the strain they can put on families, Milstein leaves open the possibility of litigation when necessary. She stresses, though, that the vast majority of special education-related filings end up settling. New Jersey’s statistics suggest that parents “win” only 28% of the time, but that number is misleading because it doesn’t account for the vast majority of cases that are settled before reaching court.

To put that number in context, consider that since she began this work in 2004, Milstein has represented hundreds of families, but has filed “only a couple dozen complaints a year. Of those, so far not a single one has gone to a decision.” In the overwhelming majority of cases, families and schools reach an agreement before the first legal domino has fallen.

Milstein described the process of a typical special education dispute in New Jersey. A family appealing an IEP-driven issue is entitled to a due process hearing with the Office of Special Education Programs, a part of the state Department of Education. That filing obligates a “resolution session” or a mediation with the school district, unless both parties waive that step. Unresolved disputes are handled by the Office of Administrative Law, a quasi-judicial body that operates as part of the administrative branch of state government.

Complaints run the gamut, but all share a common denominator: a child’s needs are not being met. Parents may contend their daughter requires multi-sensory reading instruction, for example. In cases like this, Milstein says, when a child with a reading disability needs specialized instruction, the district and the family will often work out a services settlement because it’s more cost-effective for both parties to reach a compromise than to fully litigate the matter.

On the other hand, money-driven issues can keep families and districts at odds for years. As Milstein puts it, “The bottom line is there are too many of these kids and not enough programs to serve them. Programs are expensive. The districts have been mandated to develop and fund these programs appropriately for these kids, but if a district has just two kids needing these services, it’s too costly to build that in-district.” For her part, Milstein estimates that around three-quarters of her caseload are Autism-related matters, because those are “expensive cases” for districts to serve.

Just what special education services students are entitled to is a matter of interpretation. Federal law has articulated very murky standards. Districts are only mandated to ”provide a free and appropriate public education that is reasonably calculated to confer meaningful benefit.” Milstein and her colleagues in the field of special education law recite this as automatically as the Pledge of Allegiance. Case law has established that school districts are not obligated “to maximize potential,” but rather to reach that vague threshold of “meaningful benefit.” This much is clear: the government can restrict the role of parents to individualize their child’s special education.

But can districts legally refuse a parent’s choice of methodology when a child demonstrates a need for a certain methodology? Or can parents demand a specific type of program for their child? Answers aren’t obvious.

When looking for help pursuing educational accommodations for their special needs child, parents quickly discover that answers don’t arrive from a quick Google search. There’s not a lot of centralized information out there on educational advocacy. Milstein observes that “the special ed community can’t organize under one umbrella because there are so many competing issues and agendas within the groups.” Splintering within both the Autism and Down Syndrome communities, for example, makes easy answers elusive.

Despite the hurdles, families new to the special education world should take heart in discovering that a burgeoning legal specialty is emerging to help them find a voice as they advocate for their children. Increasingly, the legal establishment is attending to this clientele. Some law schools have joined the movement, opening special education advocacy clinics. Additionally, many of the constituencies involved in special education advocacy offer online forums for discussion, counsel, and resources. Families with concerns about the special needs services their child is receiving can also contact their local Bar Association for referrals.

For families beginning their research, a few helpful online resources include:

Autism Speaks

Education Law Center

Disability Rights Legal Center