Wednesday, October 22, 2008

US does not support or help sustain families/children

OK, my posts are getting increasingly political (and awful soapbox-ey). But, so is all the other rhetoric in the country. When in Rome.... (oh, bad metaphor).

The following article motivated this post:

Parents Press for Autism Insurance Coverage

OK, I have been called a socialist before...and maybe I am. But I have my own opinions and ideas about raising children with disabilities (as I have had lots of experience with the sacrifices of that role).

I think we can insist on insurance covering autism all we want. I don't think succeeding in passing such bills is really going to help parents of autistic children that much. It is not just insurance coverage that is the problem. It is the governments utter lack of support for families, especially families with disabled children.

Much like many families with disabled children, we are in a financial shit-hole. I cannot work. That is mainly due to having two young sons with disabilities and only partially due to my own health issues. So, we only have one income. While my husband makes a rather good income in this state, our house payment is about 45% of his income. There are utilities, insurance, and other expenses before we even talk about credit card debt and groceries (one of our children is on a very special diet due to medical for him is not cheap)!

We are in the red every month. We are actually making pretty good progress on our Dave Ramsey program and have paid off a number of smaller credit cards but we have an amazingly long way to go! Additionally, we both have HUGE (and I mean HUGE!) student loans still in deferment and (at least my husband's) will be out of deferment soon. But, financially, we are the working poor.

Then there is gas. I drive up & down the state to give our kids treatment. Our younger son has had 2 surgeries in 3 weeks at Shiner's upstate...I cant even count the number of appointments we have had in the past couple months. Both the boys have speech therapy once a week, and one child has OT. There is a center for speech and occupational therapy in our town, but it is inundated with kids and we have been on the waiting list for almost a year with not even an assessment. So, we have to travel to another county ("downstate") to get ST & OT.

I attend a multitude of meetings at school. In fact, while we are waiting for a one-to-one aide for my youngest (currently in a wheel chair), I get to go to kindergarten with him if I want him to be able to attend school. My son with autism requires a constant communication and on-going team meetings with the school as well. When your child has autism, seldom can you get a whole plan for the year set, have everyone follow it, or, even have it actually work for the child all year long. It is all about adapting.

The toll this takes on parents and on a family is immeasurable. The added stress of constantly worring you are going to lose your home, car, or ability to feed your children is absolutely unbelievable, and no parent should have to go through that.

Some countries have a monthly subsidy for parents who stay home with their young children...even if they are NOT disabled. Additionally, these countries often increase that subsidy for parents of disabled children.

For all the moaning and preaching (mainly from conservatives) that one of the main problem with children nowadays is that they don't have a parent at home, that they are in daycare for too long and too early, that (god forbid) mom works as well as dad...etc etc, one would think that there would be some sort of solution to that problem proposed. But, no one that I have heard, in their infinte wisdom of childrearing, has given a solution other than bite that financial bullet & just let your spouse (read husband) work. Well, in today's financial crises how is that possible??

Unfortunately, most parents with children at home who have disabilities are too busy (and sleep deprived) to lobby Washington...and hey, kids can't even vote! So, why worry about them?

No comments: