Saturday, January 10, 2009

IDEA- fund special ed!

The Right says we have a spending problem.  I agree. 

The problem is that the federal government is NOT spending it's legal share of funds on the IDEA (Individuals with Disabilities in Education Act). 

IDEA is the law that requires schools to provide a free and appropriate education to students with disabilities. Appropriate, in lay terms, means a kid not only gets to go to school, but they get to go and learn. 

Why do we have this law? In 1970, according to the IDEA website, only one in five children with disabilities were in school. Many states had laws barring children with disabilities from attending public schools, including children who were deaf, blind, emotionally disturbed and mentally retarded. It was simply expensive and states did not want to do it. 

They still don't. California has been shirking it's duty for years by funding the Cost of Living Adjustment for regular education teachers but not special education teachers. California does this because the federal government does not fully fund IDEA, and California does not want to make up the funding difference. 

That is why local districts pay so much for special education. IDEA requires every state to provide a free education to every child, even children with disabilities. 

The feds knew in passing IDEA that they would be adding enormous expenses to schooling. At the time, it was as radical a step as Brown V. Board of Education, desegregating schools, and a lot more expensive. It meant that kids in diapers, kids in wheel chairs, kids with feeding tubes, kids on ventilators, kids with diabetes, kids who needed computers, kids with all kinds of expensive, hard to figure out needs would be in school and have a legal right to the help and support they needed. And the hope was that they would do better, live better, even learn, that some would become more independent, cost less later and even make society better. Some would just do better, and that would be better too. 

Taking care of children with special needs is not only morally right, and preferable to most people than euthanasia and abortion, it is pragmatic. Children like mine, who cannot speak, may learn to use a computer. Sure, assistive technology is expensive. My kid's computer (a My Tobii) cost $15,000! But, she will never play sports, never sing in the choir, never play an instrument, never take driver's education, never hold a pencil or a paint brush, never go to the prom. (Maybe the prom, maybe!) But the computer!? On her computer my second grader is doing math, and reading, and writing for the first time! We don't know yet how much she can do, but no one knew she could read, or add, or even think.  She might be able to earn a living  or some of her living, someday. That means the money we invest in special education now means that our typical kids might not have to pay so much for so long to keep kids like my daughter once we are dead. And even if she doesn't to leave a whole human being who can read and think trapped in her body for forty years? 

Well, you decide. What would you do? What will you do? We have to decide what kind of society we want to build. Will we fund IDEA or not? If we won't fund it, we should just be honest and go back to the way it was. 

The alternative to IDEA is history: institutions, boarding schools, orphanages and doctors who used to tell parents to give up this child, forget you had her. Personally, I am proud of this vision. I can't go so far as to say my daughter's disability is a gift from a higher power to her or me, but I agree with right, she is sacred. And the left, she should have rights. Maybe one day, we will be worthy of the vision of IDEA.

We have a spending problem. Let's fix it. Fund IDEA now. Special Education families could use the help of all families on this. Pass it on: we all have everything to gain. Pass it on: without your help to fix the funding problem, IDEA is really no IDEA at all. 

Friday, January 9, 2009

What will happen then?

I work every day for my girl. 

I joined the Community Advisory Committee on Special Education in our district.
Twice I have been to the state capitol. 
I meet with my legislator. 
I attend board meetings. 
I retained an attorney when our district refused to assess her need for a speech device. 
I applied for Medicare three times before she got it. 

Last month, a board of education member told me personally that the board was not going to cut special education. This month, huge cuts to special education are on the agenda. Our superintendent said the decision was basically already made. 

Either Gary Eberhart is a liar, or he is sadly uninformed as the board president. I actually think he is both intelligent and informed. Perhaps there is some other explanation. I hope so.

What scares me most is that these people who I work with every day, who have so little interest in my child and so much interest in their budget, will be the ones who "care" for her when I am gone. 

I hate to say that the worst thing I learned about her diagnosis is that she will most likely out live me. 

If most of the energy of most agencies now goes into finding reasons not to care for her, why should I think that will change after I die?

The true measure of a person is what they will do when they believe no one is looking. Based on what they do when people are obviously looking, I am scared for my girl. 

Thursday, January 8, 2009

Fighting over scraps

Our local school board, as many will be, is considering deep cuts to special education. Parents of regular educations students are chaffing at the rights protected by law that disabled children have. They do not realize that these rights are protected because forty years ago, a child like mine would not be allowed in school at all. 

This is a copy of the open letter I wrote to our board. 

Special education is expensive, as you and caregivers of children with special needs know. However, it is lean, not wasteful. It is expensive locally because special education has already taken a forty percent cut from the federal government. It is not special education that encroaches on the general fund, it is the federal government that encroaches on education as a whole. Please do not continue to refer to our children or their programs as "encroachments". This blames them for a problem that they did not create and over which they have no control. It is inflammatory and insulting language that disguises the true problem. 

I would ask you to be careful as you lead this community. When resources are scarce, and leadership is willing to play on people's weaknesses and fears, people will protect their own at the expense of others. Very few people rescued disabled people during the holocaust. Even in our own New Orleans, gravely ill and disabled people in hospital were euthanized before they were rescued.  Every one is pro-life and pro-child in public, but the terrible truth is that most people wish my child were not here. The easier and more polite way to say this is to demand that she get less money, fewer services and be less of an "encroachment" on more able bodied, promising children. I know that it is easier to say this than to admit that few care if she lives or dies. 

If I had any wish, it would be that she were whole and healthy. I wish for a cure for Rett Syndrome. But there is none now, and we play the hand we are dealt. So instead, I wish for speech generating devices, a nurse who is on campus when she does have a seizure, a teacher who can inspire her to learn, and do her best, even in her daily pain. I wish for friends on campus who know her name, and invite her to play. For the simple joy of being a child in a community that embraces her and does not blame her for the burden that her disability is. 

Thank you for making some of our smaller wishes for her come true. As small as they are, they may be the only ones she ever gets. That our community sacrifices for her and others like her is to our honor; society is judged by how it cares for its weakest and most vulnerable members. 

I hope that you care-- and that you choose wisely. We are not yet on a rooftop in New Orleans. The levies have not yet broken. I do not have to choose between my children, or between yours and mine. 

Warmest Regards, 

Gina Hale, mother to Emma, age 8

Wednesday, January 7, 2009

Autism and epilepsy

According to National Institutes for health, nearly one third of people with autism have epilepsy. This is the case with my daughter, and some of her friends as well. 

Epilepsy is a poorly understood phenomenon among the general public, and for many people, witnessing seizures is frightening. We have had enormous difficulty finding day care for our child because most sitters and agencies are fearful-- not unprepared-- to handle a child with epilepsy.

The current policy in California's education code, which requires a licensed nurse to administer Diastat during a seizure and prohibits non-licensed persons (including first responders) from giving it, increases the stigma around epilepsy and creates legal barriers to community activities (like field trips) and settings (like recreation programs) for children with epilepsy.

Diastat is valium suspended in a gel and administered rectally (uh, blush, blush, in the bottom). Nurses apparently do not object to Ativan delivered sublingually (given under the tongue)-- same drug, different route. Ativan given under the tongue during a seizure increases the chances of choking, aspiration and secondary pneumonia. It simply is not safe. Our doctor reacted by saying "are they trying to KILL her?" when we explained the situation to him. Diastat is the most effective, safest emergency medication. It just has to be delivered through the rectum and that is, well, embarrassing, perhaps. The nursing position statement is quite clear that student privacy is an important issue to nurses. 

Personally I don't care how many people see my kid's bottom if it means she won't choke to death. Maybe I am just insensitive. 

Parents have confided in me that they do not tell providers that their child has epilepsy until the last possible moment (walking out the door) because they would never be able to hire anyone. Parents also have chosen to use less safe emergency medication (Ativan) in place of Diastat, in order to get around the nursing requirement in the Ed Code.

This policy is also looked to by Regional Centers and daycare centers. It means that children with epilepsy are often barred from participation in community settings unless they are attended by a nurse-- an unnecessary financial burden and barrier. 

Please join us in contacting you local school boards and legislators to have this policy changed. 

Monday, January 5, 2009

Is your child non-verbal or does he or she have delayed speech? Does he or she use sign language, PECS, gestures, proximity or word approximations? Anyone with a language delay or disability is a potential Augmentative and Assistive Communication (AAC) user.

Students have a right to Assistive Technology under the Individuals with Disabilities in Education Act. This includes Augmentative and Assistive Communication (AAC). Federal law also mandates family involvement in the decision making process. The article above very clearly describes these rights and how families might be involved. 

How do you know if someone is a potential AAC user? Anyone with a disability that impacts their expressive language is an AAC user.  Some people are afraid that using AAC will discourage children from developing oral language. AAC actually helps children develop and use langauge, and often success with AAC increases children's interest in and ability to communicate.  The link below provides excellent resources about AAC for young children.

For most students with a language delay or disability, AAC can provide access to curriculum. Without these supports, some children simply cannot receive the free and appropriate education they are entitled to.