Thursday, February 26, 2009

Fighting over the shrinking pie

I had a real time phone conversation with a fellow special mom met through my blog earlier this week. How is that for the amazing world of the internets? You know who you are, honey.

After listening to the trials and tribulations of advocating for speech therapy from the state she lives in, it started me thinking.

Here we are, all of us fighting for tiny slivers from this shrinking pie. This untenable situation forces parents to fight with the schools and their states for services, schools have to fight with their states for more funding, meanwhile states beg for more federal funds to pay for the appropriate services. Talk about a vicious cycle. The long and the short of it, no one is really getting all they need.

Bubble lady, our beloved speech therapist, mentioned one time about how most of the special ed dollars go to the highest needs kids. Is this fair? Yes, they are the highest needs kids! But, when it comes to the higher functioning kids, the ones who could really use more speech, or some additional OT just don't get it. The dollars are already gone. Does this mean that special kids are competing with other special kids for services? You bettcha. And, that sucks.

I feel for these people that have to say no. What a horrible job. They know, know with all their hearts, that early intervention is the way to go and will save untold bucks down the road. But, the bucks just ain't there. Should that stop a parent from fighting? Hell no. If a parent doesn't fight for their special needs kid then no one will.

The ones who say no, at least they are intellectually honest, but I have heard stories about condescension, real road blocking and laying the blame at the parent's feet by school or state officials! This is unconscionable. And, a signal that it is time to start documenting EVERYTHING and start thinking like a lawyer.

There is help out there. And, when I went looking, I was impressed with what I found.

The Disability Rights Advocates:

DRA is a non-profit legal center whose mission is to ensure dignity, equality, and opportunity for people with all types of disabilities throughout the United States and worldwide.

DRA's national advocacy work includes high-impact class action litigation on behalf of people with all types of disabilities, including mobility, hearing, vision, learning and psychological disabilities. Through negotiation and litigation, DRA has made thousands of facilities throughout the country accessible and has enforced access rights for millions of people with disabilities in many key areas of life, including access to technology, education, employment, transportation and health care.

The National Dissemination Center for Children with Disabilities:

We are the center that provides information to the nation on:

  • disabilities in children and youth;
  • programs and services for infants, children, and youth with disabilities;
  • IDEA, the nation's special education law;
  • No Child Left Behind, the nation's general education law; and
  • research-based information on effective practices for children with disabilities.
Both these organizations have pages and pages of information, contacts, phone numbers and background. Way more than any special parent would ever have time to look through but the info is there waiting. I find relief in this fact. There are people out there, lawyer critters, that work on these sorts of issues every day. You, me, we; are not alone.

So, how much should you know backwards and forwards and commit to memory? Not much. Only as much as is relevant to your particular situation and the extent of your free gray matter. But, some of these terms and contacts may come in handy if you ever have to write that formal letter to the school or state. You don't have to be a lawyer to sound like one or know the law like one.


Holly Nappi Collins said...

You are soooo right. I will tell you even those parents with kids with the highest need don't always get it either... the trick is to always be in their face.. never, never back down no matter what they say and do (I think I've heard it all) because the school district and others rely on you to wait and wait and then go away--they hope! And a conversation with an advocate or a lawyer is never a bad idea. Education is the best avenue for parents--I wholeheartedly agree!

Gee said...

Let me tell you, it is not much different here on the other side of the world. We're in Australia and funding for children like Rohan (who need intensive therapies, both speech & OT) are hard to come by. Because he is not yet diagnosed I have to jump through hoops for everything. To see a therapist through the public health system is a joke, the waiting list is a mile long. I could go on forever. So ladies, you are not alone over there.

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