I was intending to sit down and complain about trying to get an issue solved that didn’t seem like it was going to turn out well for us; but, miraculously it turned out in the end just fine. So instead of complaining about this particular concern, I decided to expand on this issue and assess a much broader topic. Normally I don’t talk about political issues for a myriad of reasons, the greatest being that I don’t want to turn anyone off; especially if I can be of some help in addressing a problem that might be affecting another person with political differences. In reality, the topic I am about to discuss is not so much a political party problem as much as it is a viewpoint of how much government should be in charge and how much they should run our lives. I am of the mindset that feels that the less the government gets into my business, the better. For me, this idea is not a theory that I just espouse because I am a conservative; it comes from a real personal knowledge of what it really means to have government all up in my business. We had to succumb to allowing government deeper into our lives, more then we ever wanted or thought we would permit. Not by choice mind you, but, from sheer necessity. The adventure of special needs leads to so many other adventures. Only parents or people close to a special needs person can really relate to what I am saying. You find yourself in need of equipment, supplies, therapists, doctors, surgeries, procedures, aides to help out and so much more. Believe me, there are things you find yourself needing that you would never have thought of until the need arises. In fact, looking ahead to plan for future needs is difficult. We don’t know how much Parker will develop and we don’t know how much he will be able to do. All we know for sure is what he can do now. If you are a wealthy person, this is not such a big problem. If you are just middle class, these necessities can potentially wipe you out.
When Parker was about 4 or 5 we began to realize just how much we could become severely impacted by all his needs. For one, we needed to move him out of his crib into something just as safe and secure. There are equipment suppliers that make special beds, but the cost is staggering. In this instance, we became extremely creative and designed a bed that we were able to construct ourselves. Necessity is indeed the mother of invention. We also designed a bathing device, a travel bed, we adapted a high chair for a bigger child, and created a secure booster seat that we traveled with and could attach to any chair. We ran into problems when we needed a larger stroller. We went through about half a dozen different strollers, each a little larger than before, but, we finally ran out of options. We needed an adaptive stroller and they are very pricey. We were also going to eventually need a speech device and this too is quite expensive.
At first, we were very glad for my job as a teacher because I was able to keep us all insured. I worked like a dog to keep this job and the insurance. It was a constant struggle because I had a real jerk of a principal to deal with year after year. Because of the tenuous situation with my job, we broke down and got social services going for Parker so he could get MediCal, California’s answer to Medicaid. MediCal paid for things that insurance wouldn’t pay for, like respite care and some of the supplies we needed. Mostly, we were happy for the backup in the event we were to lose our insurance. As it turned out, the longer we had social services and the more I spoke with other people, the more I learned about what we could be receiving to help us out. Nobody will ever tell you all that the government has to offer people with special needs. That is for them to know and you to find out, if you can. It is like an onion, you peel back layer upon layer to find even more layers. Eventually, I found out most of what we could get out of the government and most was unattainable for us because we had private insurance. We wanted some help paying for specialists that our insurance didn’t cover because they were out of our network. We were told that we could only get that help if we dropped Parker from our insurance plan. Then, CCS, California Children’s Service would pick up almost everything. I had several problems with this idea. First, why in the world would the government prefer for us to completely rely on it rather than do what we can and have it just pick up the slack? Is this type of astute business arrangement possibly a part of California’s massive debt? There is no place to go to know what the government will pay year to year, even month to month. It is all their call and any rules today can and probably will change tomorrow. Who can work with this? It’s like walking into a casino. You might come out richer or more probably poorer. So, while we had our private insurance available to us, we kept it and paid for it and paid out of pocket for several doctors. At least with the insurance, we knew what to expect. They gave us the guidelines in writing.
After we moved to North Carolina, we kept Parker on COBRA until 2 months before it expired. It cost us $500.00 a month for just his insurance, but, it gave us peace of mind. In the meantime, we also got Medicaid through the CAP program which is the community assistance program for our area. For this, we had to jump through hoops. We had several accounts for Parker that we and family had set up for his future. Apparently, the government in all its wisdom believes that if someone is receiving Medicaid, they shouldn’t have any money. Never mind that Parker didn’t qualify for Medicaid through a monetary need. His only qualification is his disability and some pencil pusher just sits around making up rules that people have to follow in order to receive Medicaid. They obviously have no clue for whom they are making the rules and once again, heaven forbid we try to care for our son ourselves. Who are we to try to set our son up in a position to someday be able to care for himself? I obliged them as I had to, but, it was all done kicking and screaming. We had to spend down all his accounts and we were told what expenses qualified and what did not qualify. All we were allowed to leave in his name was a small amount of money for his burial costs. Nice, huh?
At least the programs are a lot less complicated here in NC than in California. It is easier to talk to someone and we do have a case manager. Unfortunately, she doesn’t make any of the silly rules and once again the pencil pusher sits around coming up with rules that seem good, but, don’t work in reality. Government, just love it! So, back to what I was originally going to go off about. We have tried every which way to get back to church since moving here. In California, we had a great church and a wonderful woman offered to care for Parker in his class so we could go to church. Every week we had someone with Parker and we could go into the service and relax. It was great! Here, we are having major issues because nobody knows us and we have tried everything imaginable to go to church. Finally, we asked our case worker for another CNA to help us for a few hours on Sunday to go with us to church. We thought that she could go to Parker’s class with him and when he gets fussy, play with him in a corner or take him out for short periods of time. That way, we could go to church and he would get at least some time in his class. We have enough hours approved for this and it seemed to me like a slam dunk request. Silly me! We are talking about the government after all. It became somewhat of an issue. I was told that having the aide was not a problem and having her go to Parker’s class was not a problem. The problem was the time she would spend in our car going to and from church. You might ask, as did I, what kind of a problem could that be. Apparently, the pencil pusher has a rule that if both parents are in the car, the CNA must clock out because between the two parents he is taken care of appropriately. Really? They want to make an issue over a person making 8 bucks an hour and a 5 minute trip each way? I saw red and went off on my case worker. I explained how stupid this all is and that I was not upset with her. It is the government. If they give you something, they can and will pull all the strings and there is nothing we can do about it. It leaves a real bad taste in my mouth.
As it turns out, we are able to use a CNA to go to church and she does not have to clock out for the drive. Not that anybody in their right mind would be willing to work on a Sunday for $8.00 an hour and clock out for the car trips. We were granted the right to use our respite hours for this and I guess we have to say thank you and move on. If there were any way to get private insurance for Parker, we would do it. Being in charge of our own lives is so worth the cost. Which is why we held on to the COBRA for him until the employer switched insurance companies and that company wouldn’t’ cover here in NC. Being at the mercy of the government is horrible and it is a constant state of frustration for us who have to accept the help we receive.