How much longer?

Today is national "How Much Longer Day" for Autism. The National Autism Association has declared today a day to write to our President, his administration, lawmakers, health agencies, department of education, the media, asking yet again for safer vaccines, federal laws to protect our children from excessive and dangerous restraining practices and seclusion room practices. There is a need to acknowledge Autism as a national health crisis.

And yet, with numbers like 1 in 100, and millions of Americans afflicted with this disorder, Swine flu takes precedence, and a rush to a find a vaccine that would work with no research, no data, again finds a focus. How does this happen? I understand that there should be coverage, we should be taught how to protect ourselves, cover when you cough, wash your hands frequently, don't send your child to school if she/he is sick, bump up the vitamin c, eat healthy foods, etc, etc.....but these numbers that swirl around....and when your child is the statistic, it's a whole other ballgame.

Here is my truth and the truth of all of us who have children on the spectrum. Health insurance coverage is non existent for the treatments and therapies that have actually helped. Many of our DAN doctors do not take insurance and they are extremely expensive. Many of the specific blood tests and metabolic tests that have to be sent out of state are not covered by insurance. The vitamins and supplements our kids take are also extremely expensive and not covered by insurance though there is data out there proving how life changing they have been. The weighted vests, the weighted blankets, the trampolines, the makes shift sensory rooms that we try to put together to help with their sensory processing dysfunctions, the listening programs, the therapuetic extra curricular activities we put them in all are costly. The reading programs we seek out are thousands of dollars. No insurance coverage, no help.

When it comes to the school districts it is scandalous how many have had to sue their districts just so that their children can get they are rightfully entitled too. To be fair, many school district are just not prepared for the influx of special needs kids, not just kids with Autism, but with other neurological issues as well. How can we not see that there is a problem here?

Health care is a moral issue. Our environment is a moral issue. The way we treat those that need our help the most translates into a moral issue, just like it was a moral issue when we were fighting for civil rights and womens rights to vote....It's a moral issue. When watching the news, every time I hear someone say that they don't want the government to decided who lives or dies, that they are afraid "grandma" won't be allowed to get the medical help she needs, I absolutely cringe. Any parent with a child on the spectrum, or a child that has needed cancer treatments or anything that could interfere with a profit that investors would like to see, knows that the denial letter is in the mail. Health insurance companies for a very long time have been playing God. Just like God is played every time there is a war declared.

Universal Healthcare is an absolute need, but what is also needed is for our overlooked children to finally get the respect they deserve as human beings, to get coverage too. What is needed is a recognition that there is a great problem here, and that it goes beyond just a medical issue, but it effects an entire life, from start to finish. If our government, the department of education, if the CDC, if the NIH, if the medical community as a whole continues to ignore the enormity of this situation and continues to turn a blind eye, I can assure you that will be the economic demise of our country. These kids are getting older and the only way to make sure that they get a chance to be a taxpaying citizen, is to give them the coverage they need, fund IDEA fully, help make available the services to help parents be able to juggle the massive responsibility of taking care of their kids with the equally massive financial, emotional, psychological, spiritual demands made on us. We have been pushing every way we know how for the longest. We have grassroots organizations that started off with parents putting their all into creating something that will benefit their kids and that have become great advocating associations/societies/ foundations..
We are a community of reach and promise and in constant search for answers and for ways to help our children live more meaningful lives. When we ask, now, how much longer, please, please give us an answer. It's a moral issue here.