Complaining. We are brought up to believe complaining is impolite, so it goes against our nature to speak up when we are dissatisfied.
When you are parent to a child on the spectrum, you have to learn to be an advocate for your child’s rights. Unfortunately, you also have to learn how to fight and complain. To learn how to voice your opinion, in an effective way is important, hence our section on advocacy, but when it comes time to complain, who do you complain to?
We are presenting this section in the hopes it will provide some strategies and direction of whom to aim your “beefs” at.
Good luck to all of us!
Not sure you know enough to file an official or anonymous complaint? Learn your rights in plain language here:
The parent’s initial telephone call to the special education attorney is almost always precipitated by an emergency situation. Wrightslaw included an article entitled "Emergency! Crisis! Help!" in a recent issue. Also included was a fantastic piece entitled "Playing 20 Questions with the Devil (or How to Handle Disagreements During IEP Meetings)" by Sonja Kerr, Esq.
Social Security Disability benefits or SSI benefits are available for some children with autism in the US. SSI ebenfits are payable if the child is disabled and the family is underprivileged.
Unfortunately, it is difficult to get a private attorney to represent a child applying for SSI benefits, but many states have set up special hotlines where parents can call for free legal help (pro bono), this is in addition to legal services offices, where available. More importantly, the Social Security Administration provides benefits that are called Disabled Adult Children's benefits. These are for adult children who have been disabled since prior to age 22, and whose parents, who have worked, are now retired, disabled, or have died. These dependants benefits provide the support (or some of it) that the parent can no longer provide. They are not means tested. Many parents (and many attorneys) do not know about them, but they can provide some measure of comfort for the parent who is wondering how their "child" will survive when the child is an adult and the parent is no longer around.
NOSSCR has a referral service for claimants looking for a private attorney (and we can also give a caller the hot line number for the SSI children's benefits). The referral is free; the attorney will charge for the representation if the claim is successful. The number is 1-800-431-2804. Our e-mail is
NOSSCR@ wordnet.att.net, and our website is www.NOSSCR.org.
Do you have any complaint strategies? Please submit to us through the "Contact Us" function to be included in our "Real Stories from Real Parents" sections! We never print identifiable information.
7: November 23, 2001