Thursday, December 20, 2007

Garden of Life

Some of you know that we have a child with special needs. Few people understand what that means to a family. Our son was born with Angelman Syndrome, a chromosomal disorder that causes global development delay and seizures, and will always require 24-hour care. As I write this, he is home from school today because he had 2 grand mal seizures last night. He also has a metabolic disorder that requires a special diet. The list of challenges he has faced is long and complicated. He’s well known at our local hospital as the happy, always-smiling non-verbal patient. He’s taught us much about love, patience, and endurance; he’s shown us that you don’t have to be wealthy or healthy to be happy; he’s played a large part in keeping our eyes fixed on Jesus; he’s given us a very big “WHY” for fighting for freedom.

My husband has faithfully worked at his place of employment for 16 years. The income isn’t fantastic, but the health insurance has been a blessing to us. Our son’s medical expenses paid by insurance, to date, are over $250,000. His monthly medications are $2000, of which insurance pays 90 percent. Despite the fact that my husband works multiple jobs (some of which the family is able to help him with) our son has, for years, qualified financially for Supplemental Security Income (SSI). Medically, he has qualified for a waiver program that helps pay for expenses not covered by insurance, including a home health personal care provider who assists him with getting ready for school, feeding, bed, etc. This has been a HUGE help for me, as I was severely injured in a car accident 3 years ago and can not lift.

Today, I received a phone call from the local SSI office to complete an annual review to make sure he still qualifies. 2 minutes into the phone conversation, I was asked for “verbal permission” to allow access to our financial records. When I asked why this was necessary, and that I had always complied with their requests for copies of our bank statements, I was informed that this permission would allow them to access our records on their own. When I reiterated that I had always complied, I was told that unless I gave verbal permission, our son would lose his benefits. I was told this was “something new”. I asked if it was a law, and if so, could I please have a copy of this law. Yes, it’s law, and yes, they would send me a copy. In searching the SSI website, what I’ve found appears to be from 2005
but I haven’t delved too far into more information yet.

Of interest: even though I said I would not grant permission for access to our financial records (which was acknowledged) and I was informed that he would lose his benefits, the conversation continued on her part with questions about the other family members. My statement that the conversation didn’t need to continue if my son’s benefits were being denied was acknowledged and after stating that she would send me a notice in the mail, the interviewer did offer a polite goodbye and hang up.

Am I surprised? No! Am I disgusted? You bet! Am I willing to sacrifice? Without a doubt!

We don’t live extravagantly, as the world views that word, at our home. Our children are happy, well-fed, and warm in the winter; they have lots of friends, are not immune to wearing hand-me-downs, and don’t get name-brand clothes very often; I drive a 13 year old mini-van with better than 200K miles and my husband drives a 14 year old Festiva with more than 225K miles racked up - it gets 40+ miles to the gallon. Occasionally we have a date. Sometimes our bills are paid late because we simply don’t have the full $200 dollars to pay Toledo Edison! We’ve counted change to put money in the gas tank more than once. Sometimes we have a little extra and we can take the kids out to dinner and a movie.

We had been thinking recently about the increased intrusion of our personal lives and were debating the pros and cons of having government money come into our home. We’ve been explaining to our kids that we’re trying to get our freedom back. We realize that in order to make our country better, it will take effort on everyone’s part. It might even mean we say ‘NO’ to the carrot being dangled in the front of us. That carrot right now is a few hundred dollars every month. That carrot isn’t looking so good anymore. We want the whole garden, and the government isn’t going to be the one offering it! We have to plant it ourselves. We’ll fertilize it with a Ron Paul Presidency, and we’ll share the harvest with our fellow Americans.

We’ll say “NO” to any more people who think we will willingly give permission to tread on our home, trample our freedom, and trash our country. Our family’s needs will be met. We trust God to supply what we need. He promised He would do just that - why did we ever doubt it?

1 comment:

*~Tamara~* said...

You have proven over the years what a strong person you are. I know you're frustrated. Hang in there. I love you, Dee.