One of the most difficult, yet needed, things for special needs children is effective advocacy. During the special education training I received recently, a speaker pointed out that people with disabilities is the largest and fastest-growing minority in the United States. This information itself points out the need for effective advocacy. How many of you realized people with disabilities was the largest minority? How often do you hear about the rights of disabled people being violated? Chances are unless you yourself are disabled or an immediate relative of a disabled person, you rarely think about it when the term “discrimination” is used – thinking much more about race, gender and sexual orientation issues.

Further, the most vulnerable, less visible subset of disabled people is the group with “hidden” disabilities, such as mental illness or developmental disabilities. These are the folks who you can’t identify as having a disability by looking at them. They are the folks who manifest their disability through their behaviors, and are often judged as bad, weird, crazy or stupid instead of viewed as disabled.

Parents a special needs child gives you a burning passion toward advocacy and making things right for your child and others like him/her. Unfortunately it does not give you the time or energy, or even the emotional stamina, for the overwhelming fight. This lesson was driven home for me this week in a big way.

Here in Georgia we have an awesome online group of parents, advocates and special education attorneys who meet in a Yahoo group called GA Children’s Network. It’s a place where parents, advocates, attorneys and private service providers (like speech therapists, psychologists and others) can talk specifically about special education and other issues our children face. I’m not aware that other states have similar groups, although every state should. I do know that most states have a Partners in Policymaking chapter and other groups that support parents of children with disabilities and train advocates.

Through this online group, I have been watching two issues here in Georgia. The first was the development of new state special education rules in line with the IDEA 2004 regulations. And the second was SB 10, vouchers for special education students that I’ve blogged about before. The special education rules have two areas that were troubling to me personally. The first was language surrounding medical homebound that emphasized that a doctor’s request for a special education student to receive homebound services was just the “doctor’s opinion” and that homebound was specifically for physical illnesses (implied exclusion of mental illnesses). These rules apply to special education students only. This language just reinforced the way our school district has been implementing medical homebound for years. When our psychiatrist requested it for LuLu last year, it was denied (and continues to be). But when KayKay had mono in 5th grade, one phone call and a pediatrician’s signature was all it took to get a teacher out to our house in days. Of course, KayKay is an honors student with an above average IQ, so that makes all the difference in the world.

The other area of even greater concern in the state’s special education rules is the expanding use of the psycho-educational centers here in Georgia (now renamed G-NETS). These are separate facilities where children with neurological impairments and developmental delays are sent, if their behaviors are viewed by the school systems as severe. (These facilities are at the heart of our due process battle). New language in the rules about G-NETS in essence remove the criterion that a student has to have an eligibility category either autism or emotional disorder (in GA it’s called emotional/behavioral disorder). To my knowledge, Georgia is the only state that segregates these students into separate facilities with isolation rooms and entire staffs trained in restraint and focused solely on behavior modification. (There may be a couple other states, but I can’t find them through research.) So now, even more children who exhibit behaviors (likely due to their disabilities and not being taught/served correctly) can be shuttled off to these centers. Accountability of these centers is non-existent. The public can not visit, nor can a child’s private doctors or therapists. Reports of injuries and violence abound.

Advocacy for the safety of disabled kids in schools is paramount in Georgia, and likely in other states as well. But it’s another overwhelming burden that falls to the parents of these children. While my passion is there, my ability to speak up is often hindered. One advocate lamented that only two parents attended the State Board of Education meeting on Wednesday to speak out about G-NETS. I had planned to be there, as others had as well. LuLu’s need to see the GI specialist in an emergency appointment derailed that plan, as others had illnesses and needs to care for their own families in crisis as well.

It amazes me both how passionate and how hindered we parents of special kids can be when it comes to advocacy. We want to do it and need to do it. Yet our immediate family needs often compete for our time, energy and resources.

On a very positive note: An active letter and phone calling campaign by these same determined parents has pushed SB10 out of the House committee and onto the House’s voting agenda with only a few days left of the session. Thank God for the Internet, which allows special needs parents to communicate in desperately needed ways!