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.

Special Education: infiltrating the system

Special Education is always a touchy subject for the school district due to the ever shrinking funding pie. Frankly, it is a huge drain on the budget. This puts the district in a perpetual "defensive crouch". Anytime a parent is searching for more help, the school district must see dollar signs flying out the window. Alas, this is the result of an unfunded mandate.

IDEA is our nation's special education law. IDEA stands for Individuals with Disabilities Education Act.

"The IDEA was originally enacted by Congress in 1975 to make sure that children with disabilities had the opportunity to receive a free appropriate public education, just like other children. The law has been revised many times over the years."

As a parent of a special needs child, it is your responsibility to be an advocate. Read up, inform yourself about what your child needs, learn the vocabulary and fight, fight, fight. But, I have found that being armed with knowledge may not be enough unless you are a lawyer willing to file suit against the school district. As a tax payer and a community member, the last thing I want to do is strangle the public education budget any more with a lawsuit. Although, in some cases that may be the only way to effect change.

But in this post, I want to focus on a more insidious strategy; infiltration. Most school districts have Special Education Committees or advisory groups. If not; they should. Large districts probably do have some sort of group just because of the volatile nature of Special Ed. Parents should be able to access and approach these groups for information, updates and to express specific concerns. Small districts may not have a group yet for no other reason than it hasn't been pulled together yet. Somebody needs to push for it, maybe that is you?

That is what I am dealing with here on my little island. Over the years, a lot of animosity has grown concerning the issue. Many frustrated parents have just pulled their kids from public school or have moved out of district. Some are threatening to sue. The school district has finally realized that open communication and dialog is a lot better than paying for and dealing with lawyers.

Welcome; the brand new Special Education Standing Committee represented by staff, specialists and parents. Meetings, of course, are in the evenings on a monthly basis. It is still being determined what this group will actually do but the fact that it has been started is a big step forward. I have been asked to be on this committee and the first meeting was last week and I learned something interesting. There are approximately 1,600 students spread out over our 3 schools. Just a tad over 10% have IEPs and are getting services. I guess this is about normal. In fact, if the IEP population goes higher than 12.9%, the state does not reimburse the cost because they feel the district is over-identifying! I expect I will learn a lot being part of this group and will share details on my blog as it comes.

But, let me conclude by talking a little about "squeaky wheels get the grease." No where is this more true than Special Ed. and working with your public school on your child's behalf. I realize we have all been taught manners and politeness and those should not go away. But, assertiveness, laser beam focus and exhaustive repetition are the weapons that the special parent will need and find useful. I am not advocating being an jerk, in fact, please don't be a jerk. Don't give them any reason not to deal with you. Incivility or "jerkiness" could be seen as a valid reason to not deal with you and your child will suffer because of it. Your job as a special parent is to push and push and push some more for the appropriate services for your child. If you keep at it, they can't ignore you. If you squeak, you will get the grease.

And, sometimes that grease could come in the form of being asked to populate a Special Ed. advisory committee. Consider it a battle won in a long war.