Alright, Enough Government Already!

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.

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About Lori Linn

Besides writing, Lori has been an Actress both on stage and in film, is currently a member of SAG and AFTRA, and is a credentialed teacher as well as her full time job as a mom.
This entry was posted in Children's book, novel, non-fiction, seizures, epilepsy, VNS, special needs, disability, genetic disorder, author, Mowat Wilson Syndrome and tagged , , , , , , , , , , . Bookmark the permalink.

11 Responses to Alright, Enough Government Already!

  1. Mia Renee says:

    Lori,
    You are saying everything my husband and I have been saying for years! I hate like crazy having the government’s thumb on us constantly, but unless you’re a very wealthy family, there are very few choices. 😦 My case worker’s argument about government run health care for all was this: “Anyone who thinks having the government health care is a great idea, speak to the parents of my caseload – you might walk away feeling different.”

    I feel your pain.

    I’m so glad to read your blog!

  2. Ross Gard says:

    Lori,

    I thought awhile before writing this, because I feel deeply for you in what you face every day. But there is a dissonance in what you write that I can’t ignore.

    If you feel there is too much government controlling how you care for your son, the answer is simple: Stop going to the government for help. The standard line of modern conservatism (which is utterly different than classical conservatism) is that people like yourself should pull themselves up by their own bootstraps, or, where that isn’t possible, rely on private charity.

    It’s not quite clear to me how you can complain that the government services are not meeting your needs on the one hand, and on the other you support the Tea Party movement. Rand Paul, darling of the Tea Partiers, announced his budget proposal this week. It included a 26% cut in the budget for the Department of Health and Human Services. That’s the parent department of Medicaid. Isn’t this sort of gutting of social programs only going to exacerbate the problems you describe? Aren’t the services you need only going to become more difficult to obtain if our already-meager social safety net is frayed further?

    Should government social services be more effective, more available, and less bureaucratic? Absolutely. But how are we ever to work on that problem, when we face the problem of these services being cut to the bone or beyond?

    I believe strongly that medical care and the sort of support you need should be the right of every American. In most other western democracies, they don’t even question the collective responsibility to take care of the most threatened in society. Somehow, in the U.S., the same efforts are vilified as “socialism” (which they are—and what’s wrong with that?), and anyone who wants to make social programs more available and effective are labeled tax-and-spend big-government types who want the government to take over our lives. Look at what it took to gain even the end of preexisting condition denials and the inclusion of an additional 32 million Americans in the health insurance system.

    I just don’t see how in one breath you can call for smaller government and in the next complain that government isn’t doing enough for you. If the political entities you support had their way, you likely wouldn’t have even the help you receive today.

    I hope I haven’t offended you too much, Lori. I truly wish you the best in the challenges you face.

    • Lori Linn says:

      Thank you for giving your point of view about my blog. It was interesting to read. The purpose was not to offend anybody and I was not really looking for an answer. I was just voicing my frustration as a person who has had to deal with government entities up close and personal. You are correct that we could pull out of the system and go it alone. It could break us if expenses became out of hand. I think as a society of caring humans we need some sort of net to help those who cannot help themselves like disabled people since we can not force insurance companies to take on such a risk.

      I don’t think that we should get rid of all entitlements, but, they should be given out sparingly and only to help get people back on their own feet. It should not be given out as free and easy as it is. Keeping anyone on unemployment for 99 weeks is insane and it cripples people. Nobody is going to get a job if they can stay home and get paid.

      I would be fine with a cut in Medicaid. I don’t think the government should pay for as much as they do. In order for us to get the medical covered we were told we had to take the rest because it is a package deal. It is all or nothing. That is ridiculous and only the government would conduct business this way. Cutting all entitlements to the bone is probably the best solution to cutting through the crap of regulations. If they cut maybe there won’t be so many rules and so many hoops to jump through.

      Believe me, if we could financially afford catastrophic expenses or if Parker were not disabled, we would love to care for him unassisted. We know it is our responsibility to care for our own and just being an American does not give us some extra perks. We have the best medical care in the world which is why people from other countries come here when in need. In other countries people can and do die from lack of medical care. I have been to other countries where they have socialism and it is not good. My sister in law is from a socialist country and she is grateful to get quality healthcare here.

      I wouldn’t wish socialism on our country. I would be so sad to see our healthcare system go the way of Canada, UK and others. We would have to start investigating other countries where we could take our son to get care. When the government is footing the bill, the government gets to make the rules and gets to decide who gets care and who does not. I am sorry if I gave the impression that I want more from the government. That is the furthest from the case. We would be thrilled with minimal help and then allow us to care for our son the best we can too. That is the problem. They want to make all sorts of rules and it costs the government and all of us or should I say China more. If anyone can come away with anything valuable about my situation, it would be that they need to be glad for their healthcare system and pray that we don’t all end up in the position my son is in. My husband and I have insurance and we have a high deductible. With this new law, we are not allowed to have this plan that works well for us. We have to pay for more insurance or get fined. That is socialism for you. Yes, we definitely need smaller government and no we don’t want anymore from it. Believe me, I don’t want them doing anymore for us!

  3. Bria says:

    Great Post Lori! I completely agree with you! You continue to amaze me every day! You are an excellent mom, and if anyone knows anything about “pulling themselves up by their boot straps” its you! You arent asking the government for anything, this is just the only way Parker can receive the care he needs and deserves! People who aren’t in your situation will never truly understand what a difficult position you are in! To me, you do what you have to do to take care of your kid! Love ya!

  4. Ron Genise says:

    Of course the reason these “crazy” restrictions are in place is because most Americans won’t properly fund the programs so important to you, and the needs to keep the costs low so we can keep the taxes low come into play. In the teabag world, you wouldn’t even have these programs, because, well, too bad for you.

    Perhaps rather than buy into the evil government theory you bought into the social democratic theory where things that involve life should not be governed by the profit motive, but should be what we as a society require of our fellow citizens to be a just society.

    • Lori Linn says:

      I don’t think it is necessary to start off by attacking the average American citizen, calling them names. We are a part of the Tea Party and we are all races and religions and political affiliations. We don’t have any socialists or communists for obvious reasons; but, we encourage everyone to participate who believes in the government that our founders put in place. Social programs were put into place to help those who would otherwise fall through the system, like our son. There is nothing wrong with these programs being in place. The problem is how poorly they are handled by the government that wants to keep growing.

      If you are convinced that socialism or communism is the answer, you should begin to study other countries that have or have had these systems and see why they do not work. I guess you could say that the governments in those countries delivered social justice; unfortunately for the masses, of which we are, everyone is equally poor and the incentive to work hard and strive for better is gone. We, the majority of the country, don’t begrudge other’s ideas when brought to the table for discussion, we just have a real problem when it is sneaked in and kept under the table. If the discussion is should we replace the Republic with communism or socialism, than fine, let’s discuss. Unfortunately, we have never been given the option to discuss and debate this issue because the liberal media and the extreme liberals know that the majority would never accept either of these.

      • Ross Gard says:

        Oh, Lori. Don’t realize how you contradict yourself? You write that there’s nothing wrong with the sort of support you want for your son. Then you say socialism isn’t the answer. That support is socialism. As are Social Security, national parks, public roads, public schools, the national air traffic control system, municipal utilities, public transit, public libraries, and your local fire department. We have a mixed economy. We’ve always had a mixed economy. Unless you want to do away with everything I’ve listed (and few thousand other things there isn’t room to list), the question isn’t “Should we have socialism?” but rather “What services do we want our government to provide?” Without socialism, your son would receive no services from the government.

        As for socialism delivering equality of poverty and destroying the work ethic, I can think of a hundred million Canadians, Swedes, and Brits who would disagree with you. Then add in a few hundred million Americans who are big supporters of Social Security and local public schools. You seem to be confusing social democracy with Leninist communism.

        I have no idea what you’re on about with “sneaked in and kept under the table” or “replace the Republic with communism or socialism.” You couldn’t replace a democratic republic with socialism, as one is a political system and the other is an economic system. And, as I’ve pointed out, socialism lives right beside capitalism in our democratic republic today, as it does in every democracy in the world.

      • Lori Linn says:

        Oh Ross, I have not contradicted myself. Where did you get the idea that I oppose all social programs which are indeed a sort of socialism. The socialism I speak of is one that replaces capitalism, giving the government all the power to distribute as it sees fit. We are not there yet! Apparently, you have learned somewhere that political beliefs are black and white. Some may have that ideology, but, I never have. I see all shades of gray. My point here, was simply that the government does things very inefficiently and needs to be pulled back before we are completely bankrupt. You mentioned social security, which has been a huge problem for us. When it was put into place, FDR said it was unsustainable. Why didn’t the government make it into a workable program long ago? Answer: It is the government and they don’t fix problems, they make them.

    • Lee says:

      I think the point was supposed to be the restrictions neither service the individual’s need nor the public good, at least not very well. In many cases rules that make no sense waste more money than they provide. The government’s response to any issue tends to be to pile more bureaucracy on top of it. Let’s just say that clear and concise is not something I expect to see from our government any time soon.

      As far as eliminating profit as a motivation, that didn’t work out too well for the USSR, or anywhere else is has been tried as far as I can tell. Capitalism is flawed, but it has more strengths than weaknesses. The purpose of regulation is to control the weaknesses, not to run the economy. There is a happy medium in there somewhere.

  5. Gigi says:

    I agree with one of the previous comments, you can’t have your hand out (although that analogy has a negative connotation, I don’t mean it in that way) and at the same time criticize those providing assistance. The government i.e. the citizens of this country have to have some the right to oversight and accountability for the funds being distributed to folks in need. We all have to get beyond “I want what I need but I don’t want anyone else to have what they need.” It is a sad future if that’s the way the country is heading.

    • Lori Linn says:

      First of all, my hand is not out. Thank you very much!! Second, apparently you didn’t read what I wrote. The government is wasting money, giving more than a person needs! That is waste and unacceptable. The point I was making is that government can not seem to handle any business properly which is why they should handle as little as possible. Those, like yourself, wanting socialism will get only more inept careless business practices. I never mentioned anything about others not getting cared for and I never will. I have a problem with people that are irresponsible or just want to live off others, not with people who sincerely need a hand up, not hand out! I am sorry you missed the point of my post. It was to say that our government has become far too bloated and it needs to be tailored back to a manageable size.

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