CGM MiniLink Ordered!

I’ve waited a long time for this day, and I’m hopeful that my “new” insurance company doesn’t boot my hopeful ass out in the parking lot with this order. When I called my new insurance company they stated that I don’t even need a prior authorization for this product. The person (people) I spoke to were one of the following three things:

1. Liars
2. Misinformed
3. Extremely helpful well-informed and accurate customer service representatives

If I were to heed the law of averages (how often have your health insurance customer service reps been helpful, well-informed, & accurate), I would be pretty bummed right now, but I’m not allowing myself to feel the pain of the “what ifs” of 1 & 2.

Obviously, I’ll let you know what happens. Till then, take care, and damnit, happy New Year!

Back Pain, Low Blood Sugars, and Lost Weight

I began 2007 weighing a prime 174 pounds. I will begin 2008 weighing a mere 157 lbs. At 5'7, 157 lbs. I am now no longer considered overweight by the stiff medical profession. I am also not exercising as often (but I am exercising), nor am I running, but perhaps at some point in 2008 I will resume my old patterns of exercise. I should hope that I will be able to as I continue to build up strength in my leg and back and decrease my pain level.

I had my back surgery in September of 2007. Tough stuff. I mean, the back surgery is tough. I am experiencing a lot of residual pain in my back which has required more vigorous pain management than I had anticipated. Currently I am doing physical therapy strength training twice a week for 50 minutes, and in January I will begin myofascial release therapy on my back as well. I switched from daily taking a Lorcet or two (way too strong for daily use!) to now I am taking trammadol a few times a day with ibuprofen to help manage pain. I would have to say that post-surgical pain in my lower back has been the most frustrating part of my experience. While I have gained a huge amount of strength in my leg and I no longer walk with a limp (or gimp), the pain is something I daily deal with. I hope that with the aggressive treatment plan I have that the pain will continue to improve. On a positive note, the pain has been improving and I have been able to reduce my trammadol intake from 8-10 tablets per day to around 6 per day.

Since my surgery my insulin intake has drastically reduced. I used to take around 40 - 45 units of novolog per day, now I am taking 20 -25. I am having a LOT of lows lately, and I've been reducing my basals like clockword (meaning every other day). With a track record like this, January 2nd can't come fast enough (that is when I order my MINILINK!)

Oh, and my a1c? The joy that it is was recently 7.6, which is the highest it has been in three years. At this height, all it can do is go down right? And with the lows I've been having I'm sure it will! I'm hopeful, also, about the Minilink technology assisting me in lowering my average sugars. I typically don't feel my lows, which means I tend to let them run a bit higher if I can't check every hour. There is a lot of fear involved with not being able to sense low blood sugars!

But Isn’t She a Diabetic?

The choices one makes as an individual with type 1 diabetes regarding food(or the mother of a child with type 1 diabetes) are not choices that should be spotlighted with intent to denigrate said choices.

A person with diabetes (or a child with diabetes) should not (and in my family will not) be limited in their food choices merely due to the presence of sugar (or other simple carbohydrates). For those who are not aware, the dietary guidelines for type 1 diabetes are extremely individualized and very much different (and at times contrary to) from the dietary guidelines for a person with type 2 diabetes controlling their blood sugars with diet.

You may (and should) refrain from raised, questioning eyebrows in response to any mention of cake consumption in my family. We can, and do (but not necessarily often) eat cake in my household. We are particularly fond of tiramisu, which may be one limiting factor in regards to our cake consumption. Please note that the limiting factors in regards to the “sweets we eat” typically does not include the fact that two individuals in my home have “the diabetes.” Typical limiting factors of “the sweet” include:

1. Refusal to eat green beans (You can’t have any pudding if you don’t eat your meat (veggies.))
2. Prior “sweet” ingestion in that same day.
3. Whether or not we like the “sweet” in question.
4. Time and motivation to “prepare the sweet.”

I have diabetes. She has diabetes. Wouldn’t you like to have diabetes, too? (sung to a tune, you know the tune.)

Behaviors & What Came First?

I have quite a bit of experience with “behaviors” in children seeing as how my son’s disability seems to be primarily distinguishable (at least initially) by his “behaviors”. I have a hard time with that word, because the implication isn’t a good one at all. What this doesn’t communicate is that my son’s behaviors (and my daughter’s for that matter) are a means to an end, a communication when communication is extremely difficult. I have been blessed in many ways because my son does communicate verbally very well, but that does not mean that he lacks in his “non-verbal” communications in any way. In fact, Sandis often tells me some of the most important things by his actions rather than his words.

While browsing comments on another blog recently, I came across a few comments that irked me to no end, which got me thinking on this topic. One comment was that this reader knows for a “fact” that single mothers train their children to act out in school in order to receive SSI payments for them. Don’t even get me started on this one. The other comment was that oftentimes a child’s behaviors are a result of a lack of structure or boundaries provided by the parent. This stopped me, and in a sense confused me.

If the nature of a child’s disability is defined in part by their unawareness of specific structures and boundaries (whether they are provided or not), how can one truly judge if their lack of boundaries is parent-induced or more a symptom of the child’s disability?

I have to admit, I am sympathetic to a fault to all the parents in grocery stores or any store that are having behavior issues with their children. Why? Because every single time I go to the store with my son it is difficult, at times tear-inducing, and certainly fear-inducing. Sandis will tell you, frustration etched into his brow, how much he hates stores. He says it is loud and there is too much going on and he isn’t able to make good choices in them. In tears he will tell you how hard he tried but there were just “too many people.”

It is these times, or later as I reflect on them, that the dirty looks I am often the recipient of in stores don’t mean as much, or sting as much. I think that these people really don’t know, and how could they? Compassion for the parent and child is certainly lacking in these parts (America) and typically a non-typical child minus a physically apparent disability isn’t going to get much sympathy from anyone (but you will get several offers of a good ‘ol American style beating.)

Behaviors will never deter us from going to the store. It will always be hard. One day little man Sandis is going to have to go to the store alone, and what will he do if he cannot? Sandis needs to be able to learn to shop on his own, independently.

My child’s behavior in a store is not a reflection of me, nor is it a reflection of the efficacy of my parenting. He cannot currently act appropriately the entire time in a store, but with redirection, and a lot of practice he will learn. And when is the best time for him to learn? It seems quite the Catch 22 to not take my son to the store to learn how to act appropriately there because he cannot yet act appropriately the entire time he is at the store.
I firmly believe that as a parent it is not my job to control my children but to teach them. This may be hard to understand for the “Children should be seen (sometimes) but certainly not heard (ever)” generation, but it is more on target for positive growth than any other tactic.

Good People - Party Bias

This past weekend, I have had the opportunity to hear some of the views of family members from a party that is, well, not "my" party.

Perhaps I disagreed with them. Perhaps I found some of their points interesting. What I left with, though, is not something on which to base further Republican and Democratic fisticuffs, but something else.

Good people are not confined to one party, or the other. Before all my reading Democrats get riled up (haha) about all the evil Republicans that abound, I remind you that despite the differing views between parties, the two parties NEED to talk (communicate, not just like talk at eachother) in order to create policy that is both effective and able to be signed into law.

I'm fairly certain that the party I associate with (not telling) is pretty clear to most by the less than "conservative" views I tend to have. I must say, though, that although my views may not be considered "conservative" I am not sure how recognizing that adequate health care for ALL not just an elite FEW can ever be perceived as "liberal".

I have many family members on the other side of the fence that I love. I have many family members on my side of the grass that I love as well. We have different politics, but in the end, we basically (I think) want to accomplish the same things for our loved ones. It is all about how we get there.

I encourage any of you (all of you) to jump the fence at some point this week and open up conversation (however limited, as long as it is a give and take) with someone on the other side, and lets get a "bipartisan" movement truly happening; first in communities. Perhaps then our "representatives" will follow suit.

In Response

Christine-Megan had a great comment on my last post, so great that I had to dedicate an entire post to respond to it.

I agree that healthcare isn't nearly what it should be here and a lot of people get screwed, but I'm not sure what the solution is.
Healthcare as it is in the UK or Canada scares the crap out of me.
It's HARD to get a pump in the UK, and I like my pump.
I know people in Canada that bought their's out of pocket.

Why does it scare the crap out of you? Maybe it is news, but it can be fairly hard to get a pump in the United States as well. First of all, you must meet at least one of the following criteria in order to get a pump in the US: Be well-to-do or have pretty damn good insurance. If you are well-to-do then you can afford the co-pays & deductibles of your insurance to not only initiate pump therapy but also continue it. You also have the option of paying for a pump out of your own pocket if you are well-to-do and your insurance doesn’t feel that it is a medical necessity. If you aren’t well to do, then you can pay your percentages, co-pays and deductibles, and hope it doesn’t bankrupt you with your current insurance policy to continue pump therapy.

So who in the US doesn’t get the option at all? The un-insured and the under-insured. They can’t get a pump at all. The un-insured can’t afford to buy a pump out-of-pocket nor can they afford the supplies needed to maintain therapy. The under-insured, even if their insurance approves the purchase of a pump and covers part of the cost, still can’t afford their portion.

So I guess that it is easy to get a pump in the US if you meet certain class criteria (see above). If you don’t, sorry man, you are out of luck.

When I needed a neurology consult, I got one in 2 days here. I can often get into the doctor's office the next day if I need to. When I needed a CT scan, I got one that day.
My family in the UK has connections and they wait a LONG time to see a specialist.
When I was observing in the ICU there was a patient there who's family was paying out of pocket for him to be in the ICU here, because the one in Canada was full.
That scares me.

I find this interesting because the US of A has fewer doctors, fewer nurses, and fewer hospital beds per capita than the average country in the Organization for Economic Co-operation and Development.

(I stole the above reference from “Your Pharmacist May Hate You”. Hop on over and take a look at his blog.)

As they say- access, quality, affordability- pick any 2.

And the uninsured and underinsured of America have which of these? That’s right, none.

I’d love to share with you a personal story about a man I know, a man I know and love, who just so happens to be uninsured.

This man is a small business owner (we’re talking one man crew), and at the tender age of 35 he discovered (quite painfully) that he has a congenital defect of his urethra which over the course of his life caused his urethra to completely close.

In significant (excruciating) amounts of pain, this man went to visit the Emergency Room. Upon finding out that he had no insurance, they performed a uroscopy on this man under local anesthesia to widen and open his urethra. So basically, what they did (in laymen’s terms) is they put a long camera up his urethra (penis) while he was fully awake and somewhat anesthesized (thanks to fentanyl) and used rods to widen his urethra so it was no longer closed. Typically this type of procedure is done in an OR under general anesthesia, but why waste the time and money on someone who probably can’t pay for the expense in the first place?

This man wore a catheter for two weeks, and after this period followed up with a clinic in the hospital, where they informed him that if he had insurance (or once he had insurance) they would schedule surgery to correct the problem with his urethra. In the mean time, he would have to self-catheterize himself daily (with the same catheter no less) for at least two weeks to help assure that his urethra would stay open longer. They prescribed him some empiric antibiotics (levaquin) to help fight off certain infection for a period of two months and sent him off on his way.

Oh, and his bill? Over $10,000. He was billed over $10,000 for sub-par care that did not take into account his pain level (in the hospital nor at home) nor his capabilities to perform the tasks requested of him, tasks that are typically reserved for a home-health nurses. The care also did not correct his problem, and this problem is likely to (will) happen again when their temporary solution runs its course. And then? Another $10,000 bill this man cannot pay.

To this day approximately one year later, this man still has not had the surgery to repair his urethra, and fortunately, has not yet had another problem.

Is this the type of care we want for our loved ones (or ourselves?) should they not have health insurance? This is just one story, I’d love to hear more.

On Universal Health Care in the United States

I am not quite sure how it happened, but somehow, the American Public has been brainwashed into believing that socialized healthcare is a “bad” thing.

You know what, I’m sure all that popular media is right. Socialized health care must be bad, especially in light of our current system and how remarkably well it works. We are most certainly on the right track. Socialized health care is clearly evil, and damnit, poor people really don’t DESERVE to be healthy anyhow.

Wait, not poor people. I mean, poor people qualify for Medicaid which in many states pays for just about EVERYTHING (I mean, everything unless you need something like a tooth filling or a pair of glasses that aren’t plastic taped together at the ends). So who exactly is it that we have decided don’t really DESERVE to be healthy?

That’s right. We’ve very clearly made our point in America on how we feel about the working poor, the working lower middle class, and the working middle class. We really don’t give a shit about them. If they get sick and can’t afford their co-pays, premiums, and deductibles that’s really too bad. They should have saved better. You know, taken advantage of that Health Savings Account we made available to them when we made their deductibles $2000.

You say their maximum out-of-pocket expenses are 1/3 of their income eh? That isn’t affordable? It is really all about budgeting. Perhaps they can’t really afford that cell phone. And maybe they really shouldn’t be driving that car. Plenty of public transportation around these parts. Maybe even they shouldn’t own a home, being of moderate means and unable to devote 1/3 of their income to health expenses. It is all about fiscal responsibility. My taxes shouldn’t pay for your health.

As American people who are touched by the injustice of the current health care system and how it DOES NOT WORK we need to SPEAK OUT about our needs and how they are not being met. Plenty of countries have made universal health a universal goal, with amazing results. Health care is not a “for-profit” endeavor, nor should it be. It is not ethical to approach it as such, and it is a burden on families and individuals as more and more of the inordinate costs of AMERICAN health care are pushed upon us.

Why are more people not outraged? Have we forgotten how to activate our anger rather than dispose of it in apathy?

The following site was brought to my attention recently. I am not sure if this is my answer to the health care situation in the United States but it is a start. And that is something.

I plan to speak at the Minnesota Legislature in Saint Paul in March about Health Care. I am going to do this, and in doing so I am depending on people (which means every single person who is affected by the shitty state of health care in the United States) to make their needs known as an echo of the story I have to tell to the legislators. My story is one story. But there are thousands.

We cannot be satisfied with band-aids. Health care should be, and needs to be, universal and affordable for people of all incomes and all health conditions. Health care must be transportable and must not be dependent on a job.

Remember, today, how to find your outrage. Focus this outrage and let’s make a difference that really freakin’ matters.

On Her Own

Gracie is my independent peanut. Truly.

A couple of weeks ago the battery on Gracie’s One Touch Ultra 2 died. Me, the ever fiscally responsible one, determined that it would be cheaper for us to REPLACE her glucometer than to replace the batteries. Shoving her “old” glucometer aside for when purchasing batteries is cheaper than purchasing an entire new glucometer, we opened the joy that a new glucometer is.

It really wasn’t all that different, except for the fact that the new finger pokers are awful little, which just so happens to work fairly well for my awfully little Gracie. The end result of all of this? Gracie is now successfully checking her blood sugar by herself. She is four, so she still isn’t quite reading the numbers, but she is checking her blood sugar herself and bringing the meter to me to look at. Quite a crafty little girl she is. She took it upon herself to learn how to do this, and me being the ever-scrupulous warden of much-too-little time, figured this would be a great way for her to take more control of her diabetes and at the same time allot me a few extra moments whenever the time may be that she needs to check her blood sugar.

Fabulous really.

I’ve read of other parents feeling sad as their child takes on more independence in their diabetes care. I waited to feel sad, some mopiness, something. But I just didn’t feel that. I have been living with diabetes for over 16 years, and I know better than many that if Gracie is going to have success with her care it is going to be because of things SHE does. I hope that I can lead by example, and I hope I can light a fire under her to want to invest the kind of time, energy, and emotion that diabetes requires for management, but in the end, it is ALL ON HER.

I understand she is four. She doesn’t have to do all of this yet. Yes, she is four, and my heart has broken a thousand times because of her diabetes diagnosis. But, imagine what she will be doing independently with her diabetes care when she is eight? She is four, and she is fabulous, and she is starting to take ownership of her diabetes care. And that is just awesome.

2008 – New Arrivals

This is the time of year that not only are most of us in the midst of some sort of Christmas (Holiday?) consumer frenzy, but we are also anticipating a change that the new year often brings. What is this change? Annual Health Benefit changes, that’s what.

This in and of itself is enough to bring most individuals with chronic conditions (or family members with chronic conditions) to their knees consumed with stress. Changes that employers make to group plans are typically not favorable. Here are some examples of “positive” cost-saving changes an employer may make:

1. Increase deductibles (You know, from something like $500 to $850)
2. Switch all health plans to high-deductible consumer-driven plans (Suddenly your deductible becomes $1500 - $2000 from the $500 it was the year before)
3. Increase specialist co-pays (From something like $20 a visit to something like $40 a visit)
4. Increase the percentages YOU pay (last year you were on a 90/10, this year it is an 80/20)
5. Force you to buy all maintenance meds from a mail-order pharmacy AND increase your prescription co-pays AND decrease your formulary (which seriously, it isn’t like that generic co-pay applies to ANYTHING I would need for my diabetes)
6. Decrease the amount of annual coverage allowed for DME (Durable Medical Equipment)
7. Increase the maximum out-of-pocket allowed OR decrease what is an “approved” out-of-pocket expense.
8. And last but least satisfying for most employers (it seems employers want to be a bit sneakier in how they bankrupt you with health expenses, premiums are much too obvious!) raise premiums!

These are just a few of the “positive” life-altering changes our employers make every year in regards to our health care which has individuals scrambling trying to figure out how exactly they are going to make it another year, with the rules changing once again. Fun stuff.

So what did my employer do?

Haha. Funny that you ask. My employer was “bought” and “integrated” and as a result, we have “adopted” our “new company’s” health plan which just so happens to be a choice of the following:
High Deductible Health Plan, 80/20
Consumer Driven Health Plan ($1375 Employer paid followed by $1125 Member Responsibility (a huge delayed deductible) followed by 80/20)
Some Really Shitty PPO 80/20 with like 80 dollar RX co-pays and 40 dollar co-pays for everything else that don’t count for out of pocket expenses

Ever wake up one day and wonder what the F*** happened? Ya, sometimes I feel like that.

So I chose the consumer driven health plan, out of desperation really. The PPO was seriously so shitty I computed about $8000 in out of pocket expenses. I figured there was no freakin way I could afford the “shitty” coverage it offered on some sort of “Gold Standard” pretense. What-the-F***-ever. How this consumer driven health plan works is that your first $1375 in medical expenses is completely covered 100%, followed by a $1125 member responsibility (one month’s worth of test strips for Gracie & myself), followed by 80/20 coverage for everything (including RX’s) and no co-pays. There is a maximum $4500 out of pocket on this plan. Fiscally, this plan was the most responsible. I’m bracing for a tough year, but I’m crossing my fingers things will all work out (It just has to).

So on the flip side, I do a little research, and this CDHC thing does have its perks. For one, continuous glucose monitoring is an approved DME expense and does not even require prior authorization. So you know what? Jan 2, 2008 I am going to buy myself a REALTIME monitoring system and I am on my way with continuous glucose monitoring. Even better, Medtronic will bill my insurance and I will pay 0% of cost because it will fall (and practically deplete) my first $1375.

So, I guess next year really is a new year. It doesn’t mean I’m all that happy about the health insurance situation, but I have managed to find the silver lining.

Last Night's Town Legislative Forum

So yesterday evening was my big “day”. I had the opportunity to share “my story” with Minnesota state legislators, or more correctly “Gracie’s story” in regards to losing her secondary Medicaid coverage beginning January 2008 because our income will no longer qualify her for coverage.

Legislators in attendance were Larry Haws, Larry Hosch, Tarryl Clark, Steve Gottwalt, and Dan Severson. Other local elected officials that attended were Stearns County Commissioner Dewayne Mareck and Saint Cloud City Council member Bob Johnson.

You can read more about this town forum here.

The reporter of this article did not capture the message my story emphasized. I expressed the need to increase the income and asset standards for Medicaid so more people could qualify. Even with health coverage, I explained that because of chronic conditions in my family, we are forced into poverty to pay for these conditions and we are just barely over the 150% of poverty limit for Medicaid eligibility. I know that my story is not singular, but is just one of many stories like it. Families need the additional coverage and security that Medicaid allows, especially when their children have chronic health conditions. With the trend of higher co-pays, high premiums, and high deductibles, having commercial health insurance is less and less meaningful, especially for lower and middle income families.

After the forum, I was approached by several people to thank me for telling my story. I was also asked to tell my story at the capitol (Saint Paul, where all the MN state legislative “magic” happens) next year. Apparently there is a bill that has been written, but not passed, that will do just what my story emphasized the need for: Raise the income and asset limits for Medicaid eligibility.

I don’t know how often or how strongly I can emphasize the need for all of us to tell their story to legislators. Without the human perspective a personal story lends, legislation is cold and made without regard to the humans it affects. You better believe that your legislators are being inundated by powerful lobbying from corporations with the money to back their requests. But last night, from legislators, I heard over and over again how important the personal stories of their constituents are. If we do not tell our stories to them, if you do not share the victories and trials you face in social programs, how can our legislators truly make informed choices in their votes?

Sandis and Self-Advocacy

Sandis has ideas about the services he is receiving in the school and the community. If something isn’t working well in school, he has an idea about why it isn’t going well. He may also have a solution. Sandis has thoughts and ideas and feelings about his life and all of his experiences and the people who work with Sandis need to make a conscious effort to find out what those thoughts, ideas, and feelings are. This will create a higher effectiveness when working with Sandis.

It sounds so simple. But how often when dealing with an issue with Sandis’s IEP have I asked Sandis what he thinks I should do? Not that often. Sadly.

So this time around, I decided to change that premise. I spent about an hour talking to Sandis about all sorts of things that we are going to talk about in the IEP meeting. I wrote down my questions, and more importantly I wrote down his answers word-for-word.

As a result of this communication with Sandis, the recipient of services, he and I came up with some pretty nifty ideas which are based on what he perceives his needs to be, not what professionals perceive his needs to be (although basically, he is spot-on). A few of these ideas are:
1. Offer gum, don’t just make it available, but offer it regularly. Sandis listens better with gum.
2. Remind Sandis to hurry up at lunch so he doesn’t lose valuable outside time.
3. Let Sandis take a “buddy” with him when he does his sensory diet.
4. Sandis has problems listening during math and paying attention because he already knows what they are going over. He isn’t being challenged in math, and needs more challenge to keep his attention.
5. Assign Sandis jobs in the classroom which will utilize his desire to be a helper and at the same time get him out of his desk and moving around the classroom.
6. Have Sandis help other students with reading.
7. Always have a helper for Sandis in music and gym because he really needs help in those classes and doesn’t like to get in trouble.

What is so cool about this is these ideas are a result of Sandis talking about his needs and his reasons for different behaviors. He was very up front about sometimes needing a helper, and he was also very up front about not liking being in trouble. He also emphasized over and over and over about how good of a helper he is. And ya know, it kind of does take a kid telling you “I don’t listen because I know it already” to realize that misbehavior in math has more to do with boredom than sensory over- or under-stimulation.

The lesson? Sometimes our most valuable resource in regards to making services in the community and at school work is the recipient of those services. I think the fancy word for this is person-centered-planning.

I'm Fairly Popular in These Parts

And I tend to get a lot of letters published in the paper.

Check it out! There isn't as many comments this go around, but of course, I did get the complimentary crabasses to respond.

Is Health Care a Right or a Privilege Reserved for the Wealthy?

Article 25.
(1) Everyone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services, and the right to security in the event of unemployment, sickness, disability, widowhood, old age or other lack of livelihood in circumstances beyond his control.

This is pulled from the Universal Declaration of Human Rights, which was created in 1948.

On December 10, 1948 the General Assembly of the United Nations adopted and proclaimed the Universal Declaration of Human Rights the full text of which appears in the following pages. Following this historic act the Assembly called upon all Member countries to publicize the text of the Declaration and "to cause it to be disseminated, displayed, read and expounded principally in schools and other educational institutions, without distinction based on the political status of countries or territories."

I have a small booklet, which I received my first month at Partners, which has these very same rights printed in it. Why have we, as a nation, drifted away from distributing to our nation what at one point we agreed were fundamental rights of all people? Could it be, that perhaps, we don’t want people to know what their rights really are?

I understand this document is not the Constitution, and we as a nation are governed under the ideas and basic rights outlined in the Constitution. But at some point, more specifically, in 1948, our nation agreed also that the above rights were the basic rights of all people. The Universal Declaration of Human Rights was intended to be meaningful to all countries and in all societies. When did we lose our way in this regard?

I hope you take a few minutes out of your day to read this entire declaration.

On the DRA

I took a walk on my treadmill yesterday, and meanwhile afforded myself the opportunity to read a report on the DRA.

No. Not the NRA. The DRA.

I’m sure you’ve heard mention of the DRA here and there, and I’m sure the mention had all sorts of positive connotations. DRA = Deficit Reduction Act.
In this time of war, reducing deficits caused by a less-than-thrifty-in-regards-to-war-giddy President (notice I still use a CAPITAL “P”) is understandably a hot topic. We’ve borrowed our children’s and grandchildren’s futures to fund this war on “something but we aren’t quite sure what” so it makes sense that in an attempt to remedy this we create ways to reduce this deficit one way or another.

One way or another.

Back on Topic. So I was reading this Congressional Study on the DRA and I started to sweat. Not necessarily from my aerobic walking pace but more from a gut-wrenching rising fear.

Ever hear of cost-sharing? How about cost-sharing in regards to health insurance? (Certainly a hot topic among Republicans who seem to assume that all poor people are irrefutably irresponsible with their funds as evidenced by our poverty!) So how would you figure on cost-sharing for health insurance in the Medicaid sphere? As in shoving additional expenses on our most impoverished and vulnerable citizens and breaking their bank account (or more accurately lack of bank account) all for the benefit of a savings in the “several billion dollars” area for the good ‘ol Federal G’.

That extra $3 co-pay for their prescription drug will go a long way to save the government money namely why? Because many will “opt out” of their prescription because they do not know (nor is it a priority to have it be known) that they “DON’T HAVE TO PAY” the co-pay to receive the prescription. If they do pay, they literally are only paying back a portion of the federal welfare they are already receiving because they are either poor or disabled. How fucked up is that? Nothing screams USA quite like welfare charge-backs!

Of course, if you are a Medicaid recipient and you are not under the age of 21 or pregnant (sorry guys), you know this cost-sharing is already in effect. Did you also know that future plans in the DRA would remove that “DON’T HAVE TO PAY” clause, meaning that providers can REFUSE service or medication if the patient does not have the $3 to pay the co-pay? Perhaps, you say, this is no big deal. What is $3? Really?

If you are a recipient of SSI, $3 is a portion of your $637 monthly income which is expected to pay for:
1. Housing
2. Utilities
3. Transportation
4. Clothing
5. Food (in some cases)
6. Anything else you require to live and function independently

Work your budget on $637 a month and THEN you will begin to realize the importance of that $3 and the ridiculousness and inhumanity that this imposes.

This doesn’t even begin to address how the DRA will really “get you where it hurts” when you are elderly. Don’t even think about the repercussions if you are elderly AND disabled.

I am going to see about scanning in this report and posting it up here for review by loyal readers who are in for some dry yet frightening reading.

Ever feel like someone has pulled the wool over your eyes?

I do.

Want to read the report I read? I found it online. Go here and read it for yourself.

YouTube

Check out my youtube channel.

I hope you enjoy your peak into our lives!

Death & Legislation

Yesterday was a day, and at the end of the day, I was thankful that I left my job WITH a job.

I have a couple of things I need to talk about today. The first is this: Recently a man was arrested for suspicion of drunk driving. The man refused a breathalyzer so he was arrested and put on a 48 hour hold in a detention center. The man was brain dead and unable to be revived the next day in his cell. The death is unusual, but there is more, which I think you will find interesting. This man had diabetes. When this man was detained police officials asked him if he would like to test his blood sugar, yet he declined. They did not pursue the matter further. Later the next day the man was found dead and the reason for death is untreated diabetes.

The uneducated person may say, “He declined to check his blood sugar, this is what he gets!” It is what he got, I suppose. But ask yourself this. If for whatever reason one day you are detained by officials and at the time of your detention, what you truly need is a hospitalization, would you rather “Get what is your due” or would you rather that the officials value your life enough to provide you with appropriate medical care? Is the sentence more important than an individual’s life?

The very fact that the police officials asked this man if he would like to check his blood sugar indicates that they knew of his diabetes. Individuals with diabetes know that ingestion of alcohol can cause severe and prolonged low blood sugars, which may make an individual unable to care for their needs. This in and of itself is life-threatening. Add to that, assuming the gentleman that died is a type 1 diabetic, he will not live very long without insulin and a full 24 hours without insulin could indeed be a death sentence. Another twist, sickening as it is, is this man’s mother had been in contact with detention facility officials asking them to treat this man’s diabetes. Is drunk driving really punishable by death? Apparently only for diabetics. I found this story in the printed Saint Cloud Times today. I was not able to find it online. If you find this story online, will you please send me the link?

The end result of this is that this detention facility, the main jail in Ramsey County (Saint Paul), will now have 24-hour medical care. Is this appropriate recompense? I really don’t know. What do you think? I think more appropriately there needs to be a protocol that is followed when any person with diabetes is admitted to the facility.

The last bit of news is that the Saint Cloud School District (#742) is having a town legislative forum on Tuesday December 4th at 6:30pm at Apollo High School. You better believe I am going to be there, and it just so happens that my Tuesday night is free next week. I’m afraid that if I don’t go, there won’t be any parents yelling about the importance of our special education supports. Cuts in special education are not appropriate by any means. Call me the guardian angel of Spec. Ed. Funds (this is me being grandiose).

Integration

They say there will be a reduction in back office staff, “less than 30 people.” I assume that means 29 people. I can’t help but feel stuck in this endless loop of “Will I have a job tomorrow?”

Big business isn’t something I really feel comfortable with. I am not the neck-to-neck competitive sort. I believe in success, but I’ve always had trouble understanding why success equaled both a winner and a clear loser.

I may not have a job tomorrow. If I do, that means someone else lost their job. It is exactly 28 days until Christmas. Perhaps enough time to spend in a rehab, and perhaps enough time for an evil zombie disease to take over and subsequently eradicate most of humankind and in turn themselves (28 days later…) 28 days is not enough time to find the resources to pay a mortgage, car payment, insurance, put food on the table, and lastly cough up some Christmas presents for little (and bigger) ones.

Sometimes losing sucks. I understand that corporate (our new corporate) will have you believe that this is not losing, this is just change. They can even spin it (in however foreboding a manner) and call it “integration”. Because integration is good right?

I really hope I have a job tomorrow.

Upcoming Events and Fare For All

These next few weeks are pretty full of new opportunities for me. The Parents of Children with Autism Support Group meets this Thursday, and it is my third meeting as co-facilitator. Partners in Policymaking weekend #3 begins this Friday. Next week Gracie begins her IEP evaluations. December 11th I will give my first testimony before legislators concerning Improving Health Care Coverage including Home Care and Therapy. Sandis has an IEP review team meeting the same day as my testimony. There is a lot going on, and I couldn’t be more pleased with the level of involvement I have.

Here is the official flyer for the Legislative Town Forum.



Finally, I found a great resource the other day while waiting in line to sign my kids up for Toys for Tots. Sometimes, you know, that happens. You find a great resource while thinking only of other things. This particular resource is not a resource only for the disabled community, but more a resource for all families. Please take a moment and check out Fare For All . This program is really stinkin’ cool.

Food is a universal need. The cost of food and the limiting factors associated with its cost, especially for working families who do not qualify for federal food assistance, or older adults on fixed incomes that qualify for very limited or no federal food assistance. My family is a working family. We spend approximately 400 dollars per month on food and toiletries (or more depending on the month). Fare For All distributes (for a price, but a hugely reduced price) FRESH fruits and vegetables as well as frozen meats. This program really addresses the highest need for food, because this is just the sort of food you CAN’T get at a food shelf (or most food shelves).

I am going to try this program out and I will share with you the types of food I receive. For $17, how can I afford NOT to?

Improving Health Care Coverage Including Home Care and Therapy

I've been asked to testify at a town forum sponsored by ARC and UCP on December 11th in Saint Cloud. I will be talking about Health Care Coverage Including Home Care and Therapy. Districts 14 & 15 policymakers (Sate of MN House Of Rpresentatives) will be present and it will be to them that I will be stating my case. I've put up my first draft. What do you think?

Good evening. My name is Sarah Rittmann and I live in Saint Cloud with my two young children, Sandis and Gracie. I first want to thank all of you for the opportunity you have given me to share with you the need for improvements in health coverage including home health and therapy options.

My son Sandis is seven years old. Sandis LOVES video games, plays hockey in the local youth league, and is excellent at mathematics. My daughter Gracie is four years old. Gracie is persistent, vocal and organized in all of her undertakings. I can understand that it may be hard to imagine a four year old being all of these things, but I also understand that you have not likely had the opportunity to meet my daughter! One thing that my two children have in common, despite their differences, is they both have disabilities and require varying levels of care to help them achieve the same level of independence that other children their age have. Gracie has cerebral palsy and type 1 diabetes and Sandis has an autism spectrum disorder.

My daughter has been involved in physical therapy and occupational therapy. My daughter’s disability is primarily physical so she also has many medical specialist appointments. Gracie, through the help of many interventions, has increased her skills and independence by a huge degree. Because of this she now only requires weekly occupational therapy, orthopedic supports, and her diabetes therapy regimen which consists of testing her blood approximately ten times per day as well as one injection of insulin per day.


My daughter receives Medicaid which is based on my income. In January of 2008 Gracie will lose her secondary Medicaid coverage as our income will no longer qualify her for this coverage. Usually an increase in income is met with happiness in a family. In my family, I have considered asking my job to decrease my pay. My daughter does not qualify for TEFRA coverage as she is not “disabled enough“ as has been determined by the State Medical Review Team. When my daughter loses her Medicaid coverage next year, our family will be forced to make some very difficult decisions regarding Gracie’s care and what therapies and interventions I will be able to continue. I do not believe it is ethical for families of children with type 1 diabetes worrying about how often they can afford to check their child’s blood sugars. I believe that Minnesota needs to take into account the needs of high medical-needs children with pre-existing conditions that may not qualify for a disability determination. Gracie deserves the increased mobility she gains from her orthopedic supplies, the best care possible for her diabetes, and she has a right to the therapies she receives that help increase her fine motor development. Families, also, have a right to these services for their children even if their commercial insurance will not cover them or they can not afford the copays and percentages they are required to pay for them. My daughter should not be denied her maintenance therapy which allows her to NOT be considered disabled simply because I cannot afford them and we are not poor enough to qualify for typical Medicaid

Sandis has a federal determination of disability so he receives Medicaid that is not based on my income. Sandis currently has occupational therapy twice per week. Sandis’s occupational therapy focuses on life skills. Sandis learns how to tie his shoes, how to act in public places, how to maintain focus on an activity he may not like, as well as many self-regulatory techniques that help him deal with frustrations and sensory input. Sandis also receives PCA services daily during the week that further helps him to complete all those things that you or I take for granted. Sandis learns how to clean his room, how to brush his teeth and bathe, how to handle frustrating situations, and how to sit at the table for dinner. All of these things that my son works on both in formal occupational therapy and with his PCA are fundamental to his independence now and also as he grows older.

Sandis’s personal care attendant is a crucial piece of his functional education. Sandis has been receiving PCA services since April of 2007 and in the past 8 months Sandis has had four different personal care attendants. He also was “between” personal care attendants for approximately 6 weeks of the first six months he was eligible for services. This means a few things for Sandis. The first thing it means is that during the time periods that Sandis is without a PCA, Sandis is denied his independence in his home routines. The second thing it means is that through the course of eight months, a child that is very bound to routine, has had to accept a new person approximately every other month into his personal routines and learn to incorporate this person into his life. There is a certain level of privacy and humanity that is lost when a child is submitted to a revolving door of personnel to aid him in things like bathing, toileting, eating, and behavioral regulation. There is also a certain level of trust that each PCA must achieve in order for Sandis to relax enough to allow them to truly help him in his routines.

I believe that it is important to not only ensure that children who need home therapy assistance are assessed and qualified for these benefits, but we also need to focus on and resolve the reasons behind the high-turnover in the direct support workers field. This high turnover intimately affects families, children, and individuals. Minnesota needs to continue to work towards providing optimum reimbursements for direct support services, and we also need to ensure that any increases in reimbursements are being reflected in the wages of the actual direct support workers.

Tagged!

I’ve been tagged! This doesn’t happen all that often in my parts, so thanks for the thought Vivian!

The rules:
1. Link to the person’s blog who tagged you.
2. Post these rules on your blog.
3. List seven random and/or weird facts about yourself.
4. Tag seven random people at the end of your post. (I’m probably not going to do this. I have trouble NOT following rules, but I’m not big on tagging folk.)
5. Let each person know they've been tagged by leaving a comment on their blog. (please see above)


7 Things About me
1. I am a drug addict. I went to treatment in 2004 for fentanyl & benzodiazepine drug addiction. The experience gave me the peace and strength that has helped me move mountains since then for my family. Sometimes it takes being at the bottom to realize what it takes to get to the top, or even if you still want to get to the top.
2. I am a perfectionist and have trouble breaking the rules. I seriously get a gut ache thinking about lying.
3. My SO is named Bob. Just so you know 
4. I read. I read A.LOT. In October of 2006 we canned the cable, and I began a new reading career. We have no TV stations. We do have some DVDs though.
5. I am a firm believer that you are what you DO. Try tracking your time, all of your time, for a week. See if your values are reflected in what you are choosing to do each day. I learned that in treatment, and it changed my life and my perception of what I am capable of.
6. I can’t stand to have my feet touch eachother. Especially not at night. I need to wrap my feet up in blankets so they can’t physically touch, which in turn drives Bob right up the wall.
7. I am convinced that apathy is a contagious disease. I am also convinced that should you catch this contagion, you must work twice as hard as any other to rid yourself of its taint. But hey, that’s politics…..and seriously, politics doesn’t discriminate. Not if you have a good enough lawyer.

If you read this and you feel like sharing some seven things about you with your reader base, please do. Oh, and consider yourself tagged. But if you DO tag yourself from me, just send me a note, so I can read YOUR seven things.

THRIVE

This evening I am attending a meeting for parents of young children for whom they have mental health and behavioral concerns. I have attached a flier that details what THRIVE is about and how it is intended to help families in my area.

My personal focus is not on early childhood, as my youngest is fast approaching no longer fitting in this category. But….You better believe that if I have an opportunity to effect the standards of care and assistance available to children and families I will be there….Raising my voice and my concerns.

I did it again :)

http://www.sctimes.com/apps/pbcs.dll/article?AID=/20071119/OPINION/111190029/1006

My Diabetes in Review, and on My Front Page

So take a moment to take a look at the small text excerpt I have inserted below my TuDiabetes video.

This is my attempt to bring my diabetes care more to the forefront of my mind even while primarily addressing disability advocacy issues everywhere else. I scrupulously track my blood sugars and calories and carbohydrate intake. I intend to record my blood sugar averages for the week, my high, my low, and my exercise minutes throughout the week and enter the information into this small sidebar.

I hope to illuminate my very humanity by this (My numbers will always be far from perfect) but also to keep my numbers, and their meanings, closer to the front of my mind. Every. Single. Day.

Please feel free to comment anytime on what you see!

I’m thinking about adding these things:
Average daily carb intake
Average daily calorie intake
Weight

What do you think?

See What Happens When I Stop Paying Attention?

The Honorable (and Presidential, even) George Bush vetoes yet another bill(Labor-HHS-Ed bill (H.R. 3043)) that would have been beneficial for children and adults with disabilities. I’m beginning to think that all this vetoing power is going to the man’s head. What makes it even sicker is despite constituents urging their legislators to vote to override these vetoes (read SCHIP) there are a remaining few who refuse to cross party lines and stick on the buddy fence with the President. I’m not exactly sure what this is accomplishing for these politicians personally, but in regards to passing meaningful bills that are supported by their constituents they are failing miserably.
This bill funds a vast array of programs that are designed to meet the disabled community’s needs. To name a few (including which programs in the bill saw an increase from President Bush’s recommendations):

IDEA (Local Grants, Part B, and Part C Increased)
Vocational Rehab (Increase)
Supported Employment (Completely cut in President Bush’s budget, kept at previous years funding in bill)
Assistive Technology Programs (Increase)
Office of Disability Employment Policy (Increase)
Work Incentives Grants (Completely cut in President Bush’s budget, reduced from previous year in bill)
Administrative Services for Social Security Administration (Increase)
State Grants for Developmental Disability Councils (Increase)
Protection and Advocacy Systems (Increase)
University Centers for Excellence in Developmental Disabilities (Increase)

This is a short view of what the House & Senate agreed upon in this bill. Keep in mind that these increases are increases over the President’s proposed bill, not necessarily increases from last year’s funding. If you want more info, go here.

I find it appalling that the President vetoes a bill because the appropriations are different from what he proposed, and more correctly MORE than he proposed. Did you notice he intended to complete CUT the supported employment and work incentives grants? What sort of support is that for full inclusion of disabled adults in the community? Apparently President Bush doesn’t really feel working is appropriate for disabled adults?

Please, make your voice heard and email or call your representative in the House to vote to override this veto, TODAY. If you aren’t sure who your representative is, or how to get in touch with them, go here for some direction.

We all have a responsibility to make our voice and our community heard. If we don’t SPEAK UP, who will?

November is Diabetes Awareness Month

And on that note, I’d love to spread some awareness, so let’s start with some basic facts that are contrary to some common myths associated with diabetes.
1. Diabetes is not caused by eating too much sugar.
2. You CAN eat sugar if you have diabetes.
3. Type 1 diabetes is managed very differently in many ways than type 2 diabetes.
4. Diabetes is not caused by being overweight. If that were the cause, all overweight people would have diabetes. The incidence of type 2 diabetes is , however, higher in patients who are overweight.
5. A person with diabetes can have very healthy babies (and many have).
6. You cannot manage type 1 diabetes with diet alone. Ever.
7. There is no set or specific “diabetic diet.” A diet for any person with diabetes is determined in tandem by the person with diabetes and their doctor.
8. If you have type 2 diabetes and are overweight, you do not “lose” your diabetes if you lose weight.

I don’t often focus on diabetes awareness on this blog. And honestly, I can’t say that my “averages” are all that hot this past month or two. My last a1c was 7.5 and my average for blood sugars last week was 183.5 (OUCH!) I’m seeing more and more highs, and feeling more and more complacent about it. I am feeling overwhelmed.

I think these periods are common for most people with diabetes. Managing diabetes is not done once every 90 days with your endocrinologist. Diabetes management is 24 hours a day, 7 days a week, with no breaks ever, not even when you are asleep. The weight of diabetes management at times is intolerable. It is at these times when control slips, and good habits lapse.

Outside interference, as I like to call it, is often not helpful in these instances. Should a coworker gently probe about my “ability” to eat a snack size chocolate bar, I will more than likely in some sort of rebuff eat three. I can eat chocolate, and outside opinions in regards to my very personal diabetes management are generally not welcome. Would you chide my daughter for running around for an hour without her theratogs and braces? No. Her care. Our care. Not yours. I was diagnosed early enough in life that at some point your taxes (and mine, thank you) will be paying to correct complications. That is not so much a failure on my part rather than a failure of my endocrine system in general at a very young age combined with the failure of our national health system (nothing much natural about it) discouraging appropriate care for young people with type 1 diabetes.

Type 1 diabetes is hard work, and it is work that I am very much engaged in. This is my health, it is important to me, and I understand that here shortly I will be out of this slump. It is important, though, to realize and understand that an occasional slump in rigidity of care may be necessary for emotional health. The very scope of care that our disease requires is exhausting, and there are bound to be hills and valleys in the timeline of care throughout our life.

November is diabetes awareness month and I am sharing with the world, today, that it is okay to sometimes not be in that good of control. Sometimes this is okay. Not forever, and not ongoing, but sometimes. Afterwards we have the responsibility to get back on track, and as long as we never lose sight of that, we are okay. We have to give ourselves that bye, every once in a while.

To every person (adult, child, teenager) struggling with diabetes today, please take it to heart that you are struggling as evidence that you are working for a better result.

A Different Focus

I wrote two lists of adjectives that reference my pumpkin and peanut. Can you tell which list is for which child?

Energetic, Amazing, Smiling, Fun, Spirited, Technical, Logical, Circuited, Literal, Sly

Persistent, Amazing, Shining, Bouncy, Opinionated, Vocal, Caring, Loves Animals, Imaginative, Direct

My children are the recipients of a ton of regulated programming that is individually tailored to their needs and offered by the school district, county, and private health care providers. All of this programming focuses on their deficits.

I took the time and energy today to focus only on Sandis' & Gracie’s attributes. These are the attributes that make my children the individuals that they are. I hope to add to this list as they grow older. I also intend to share this list with them, and often. Because really, how could a technical, logical, sly, smiling, and energetic person have any problem not realizing his/her dreams? On that same note I foresee that an imaginative, opinionated, caring, direct, and persistent individual can create a lot of positive change in whatever endeavor he/she chooses.

Lastly, I would like to point out that both children received the adjective “amazing” in their list. I unintentionally chose this word for both children while attempting to choose different words for each child.

Amazing how that works eh?

SEAC Appointee Reporting

Please take a moment to say hello to me, the newest appointed member of the District 742 Special Education Advisory Council.

I know this may come as a surprise, but although I am quite vocal at times on this blog, oftentimes my doings I keep in secret. In this way, I won’t be embarrassed if I am turned down for an advocacy position I desired enough to warble my way through an application for.

In these past few months I have taken on a sizable amount of additional responsibility in regards to disability advocacy in the community. It all began with my acceptance into Partners in Policymaking. A few months later I was given the opportunity to help facilitate the local Parents of Children with Autism Support Group which is sponsored by ARC. Now included in my fold of activities is the SEAC.

In this past year since Sandis’s autism diagnosis, Gracie’s diabetes diagnosis, and the ensuing chaos as a result of these diagnoses, there have been many individuals in the community that ensured that my family was not lost in the shuffle. The sheer amount of paperwork involved in ensuring that your child has services is overwhelming at best. I realized very early on that I could not have garnered the services and supports my family has were it not for these individuals.

At some point, our lives, my family, we fell into a groove. We still have our days. There is still chaos. But within that chaos there is an order, and also, there is a peace as through our journey in the past year we have learned so much about our rights and how they apply to our lives in the community. This is no small feat.

At what point should I acquiesce and idly warm my seat as my family has been provided for appropriately? I’ve come to the conclusion that there is no time for warming my seat. The reason is this: My family’s successes are fueled by the hard work and advocacy of all the families before me. Where other families in the past had no opportunities for community based life and services that my family does. It is only through their exhaustive work that we have what we have. I have a social responsibility to continue this work so families after mine will not have to work as hard as I have for appropriate services, inclusion, and bureaucratic accountability.

Apathy is not appropriate. If you have the inclination to complain about the current set of societal circumstances, then you have the initial background necessary to facilitate positive change in your community. It takes time, and everyone is Busy. Yet in the time you take you demonstrate to your children, you acquaintances, and friends that community involvement is essential for any community to thrive.

This is Freakin' Fabulous!

I love this, how he wipes out three kids at the very end......



And lastly, Sandis movin' the puck.



And yes, it really is that loud in the rink!

It's All About Hockey, Baby!

So we have ventured forward into the alternate reality I'll call hockey from here on out. I'm not certain how familiar ya'll are with this reality, so I'll help you out as best as possible. I've talked about wanting to get Sandis enrolled in hockey before, so the response from the SCYHA that he was approved for a scholarship was awesome indeed. From there we ventured out into hockey, and first step is? Obtain hockey gear. We bought a new pair of skates (new to us anyhow) that fit and acquired all that hockey gear.

All.That.Hockey.Gear. This presented a slight problem. Sandis barely tolerated trying the helmet on, and our hockey situation quickly devolved into a squeaking, screaming, sirening Sandis the longer the helmet stayed affixed upon his head. I devised a plan.....Desensitize the boy to the gear (the helmet, all that velcro, and poking) by foricng him to wear the gear for an hour a night.. We successfully accomplished this by none other than bribery...Video games!



Imagine my surprise when after all that bribery and malcontent on mister Sandis's part, I discover after affixing the mouth guard on the helmet, that herein lies the solution. Sandis sets the mouthguard in his mouth and there goes all the complaints. It is like a chewy tube that forms to the shape of your mouth. Fabulous. The people that created these things were smart buggers indeed.





So this afternoon we ventured out onto the ice. Skating is HARD.













And then, sometimes THEY make it HARDER.





But you know what, after a while things started to come together.











I watched in shock, at times...Is that my boy WAITING IN LINE?





Here is proof of the benefits of inclusion. Sandis is doing what all the other kids are doing. He is just another one of the boys.





There was even a few opportunities for one-one-one coaching.



At the end of the day, Sandis and Hockey, well they were two peas in a pod.

Inappropriate No's

I’m not exactly sure what it is with District 742 and Stearns County, but I sure am tired of being told no before any evaluations are actually done that justify that no.

I have requested a waiver assessment for Sandis. Why? The waiver would be beneficial for our family and help secure services and supplies for my guy more readily than what our current system of support does. The waiver would help to pay for not only his PCA services, but also Occupational Therapy supplies for his home environment, alarms for our windows and doors (ever the escape artist he is!), and also help to replace household items he has aided on their journey to heaven (figuratively speaking). This stuff gets expensive, and there are times when waiting for that Family Support Grant to be approved (or denied) we lose our opportunity to offer him the positive help he needs in the time frame he needs it. Requests go something like this.

Me: I’d like to apply for waivered services for my son.
County: I don’t believe he’ll qualify.
Me: I’d still like to apply.
County: Even if he is approved he’ll just go on a waiting list. And even then, he’ll never get to the top of the list because persons more severely affected will always go to the top of the list before him.
Me: Are you telling me I can’t apply for a waiver for my son?
County: I wouldn’t say that. I just don’t see the need.
Me: I’d like to apply for waivered services.
County: Let me talk to my supervisor about this and I’ll have him get back to you.

And so it goes. It pisses me off to no freaking end. How can you say he won’t qualify if you aren’t evaluating him? Just this past April I was advised not to apply for PCA services because he wouldn’t qualify. I persisted, and I insisted, on PCA evaluations. And guess what? He not only qualified he was given 14 hours of PCA services per week. Please, Stearns County, give me the reason that you would tell me he doesn’t qualify when you can’t possibly determine that without an evaluation.

On to scenario two. I have requested special education evaluations for Miss Gracie. Gracie is doing awesome in district preschool. She is there 3 days a week for 2-1/2 hours a session. She isn’t doing so hot in her private day care, which is also a Minnesota accredited preschool program. So we’ve implemented some sensory accommodations into this program and it has helped magnificently. She spends the majority of her school days in this program, so it makes sense that if she has problems it will be where she is the most. Next year Gracie starts kindergarten, but the accommodations she is receiving at her day care you don’t get in public schools. Well, you don’t get those type of accommodations without an IEP. So here is how this one goes:
Me: I’d like to request special education evaluations for my daughter and here is why:_____.
School District: We will bring that concern up with our team and they will decide whether or not evaluations are appropriate.
Me: My concern is just as valid as any other professionals’ concern. I’d like her to have special education evaluations.
School District: Gracie is doing wonderfully, with no problems, in her district preschool class. That shows she is not educationally affected. She more than likely will not receive special education evaluations.
Me: Gracie has had documented problems in more than one area, both at home and at her day care. Her day care is an accredited Minnesota preschool, is a learning environment, and is where she spends the majority of her day. She is educationally affected and I expect her to have evaluations.
School District: I’ll have someone follow up with you regarding whether or not she will receive evaluations after our team meets in regards to this.
Me: When will that be? I’ll call you on that day. (Monday)
So here is the deal, I really want to know where the hell these people (professionals?) get off denying my children their basic rights to services and accommodations because they “feel” like they won’t qualify. Evaluations are not based on feelings, they are based on actual EVALUATIONS.

So please, Stearns County & District 742, stop telling me your feelings. I really don’t care. I don’t have the time, or the patience, to discuss your personal feelings in this regard. Make the appropriate referrals, and let’s start the appropriate evaluations, and THEN we’ll talk about whether or not my children “qualify”.
Until then? Kindly hold your tongue.

Quite possibly I am obsessive.

Obssessive. Obssessive.

I’ve been listening to the same set of White Stripes songs all morning. That is, since 7am this morning. That is four hours of non-stop Jack obsession. I fully intend to continue this, breaking only shortly for lunch, until 3:30pm.

Should I ever have another child (doubtful) I shall name this child Jack, irrespective of gender.

I wonder, perhaps, if I am losing my mind. I wonder exactly where my mind has been. I wonder how or why it is quite so often difficult to find the words I am seeking or to focus the jumble of activity that is in my mind. Focus beyond the jumble, for it is easy to focus within. I wonder how it is that vocabulary is a fancy of mine, while spoken communication seems to be such a garble.

I find a rhythm in Jack’s works that precludes everything. A rhythm that is quite possibly in sync with my own personal rhythms. Sound odd? Perhaps, but sometimes I get the impression others feel that way about the Beetles, Grateful Dead, or even Cat Stevens (I know, weird right?)

Maybe it’s whatever in my head that’s distracting me. But if I could find emotion to stimulate devotion, well then you see…..(stolen words)

Sandis the Hockey Man

We've gone and done it. We signed the little man up for hockey. We start next weekend.

I have been arranging a para to assist Sandis on the ice. I think he will be pretty good out there except during practise when he is waiting or needs to be patient, or during games when he is on the bench.

I have been working with ARISE to find him a para to help him with hockey, and well, they aren't necessarily the most hopeful. Apparently the Youth Hockey Association is not the easiest to work with in regards to paras.

It's cool though, I'm ready for whatever I have to do to get him out there with all the typical kids for a typical hockey experience.

We try on hockey gear this Thursday. We bought the skates this past Sunday. My son is the Black Tack little guy.

I'm so excited, I just can't even express...! I mean, really, do you EVER wonder where the name Sandis came from?

The Journey Within

Dear Kathie,
I had to come and see your website! I am in class 25 of Partners in Policymaking in Minnesota this year. In our first month's resource packet we were literally inundated (in a good way!) with your articles. As I made my way through your various articles, everything you said made more and more sense. I am attending Partners as a parent of a child with a developmental disability. In one of your articles you mentioned an adult named Howard who broke into tears during a Partners training after he told you about how his father always introduced him as "retarded". After reading this tears sprung into my own eyes. I can't say how many times I have flippantly told others, in front of my son, my son's diagnosis. You have opened my eyes in more ways than one.

I later had a short conversation with my son and apologized for any time I ever discussed his diagnosis and acted like he wasn't around. My son is 7, and do you know what he said? He said: "It's okay mom, but just don't do it anymore, ok?" And then he cried

I honestly never realized I was hurting him.

Thank you so much for opening my eyes!

I am so excited for the rest of Partners. You ve mentioned in a few places on your website how Partners changed your life. I can already say it has changed mine.

The pivotal aspect of this experience was not writing the email to Kathie, or even the realizations I had as I read her articles. It was the exchange I later shared with Sandis. I can’t easily explain the sinking feeling I felt when, after apologizing to my son, I realized he knew exactly what I was apologizing for and that it had been a source of hurt for him time and again. I see my children cry often, but I never want those tears to be a result of my own callousness.

This entire experience gave back to my son the respect and humanity I had unintentionally taken away from him.

I spend so much time attempting to change others’ views so my son is regarded as an equal with other children and as deserving of inclusion and respect as any other child. I have learned that this change begins with me and my own actions. Hopefully this will encourage others to follow suit.

No Bite

My house is hilarious. And admidst all the giggles, we contemplate losing our minds.

Have you ever heard of No Bite?

This has been our family solution to thumb-sucking. Amazingly enough, it has been remarkably effective.

The drawback? (and there always is one....)

Removing the oral sensory satisfaction of the thumb has invoked a new oral sensory past-time. Namely trilling. Of course there is the occasional filler sound, but for the most part trilling.

Constant.Mind-bending.Eye-straining.Head-Ringing.Trilling.

So yes, we will continue to use the No Bite to help erase the thumb-sucking. The dentist mentioned something along the lines of decreased mastication and surgery should we not get rid of this rueful habit.

But....

What about all the trills?

On Apathy

The House failed to override President Bush's veto, and I imagine Mr. President in some surly swagger. Why surly? Surly for the very fact that our democratic house tried to override his "very relevant" veto-ing power in the first place.

I guess there is one key thing to remember in what most certainly feels like a failure. One No often time just isn't at the peak of its current life cylce. Perhaps we need a few more no's before we get that resounding yes we know that our children and families deserve.

I've talked often of the joys of persistence and I've noted how eventually, oftentimes, that no turns into a yes. This is an especially important concept as we are bound to feel phased out and unimportant in the political scheme of things. But things change. Decisions that were once a no oftentimes gradate into a yes.

The tricky part is ascertaining how to mold those no's and garner a yes.

This is my feeling on politics: Your representatives have no way of knowing your story. It is unrealistic to assume that someone else has told your story. That means that your representatives are voting on laws that will affect YOU yet they have no true concept of what effect their vote will truly have.

This is where you come in. You come in to tell your story. You take the time to learn about the bills that affect you, your children, your family, your friends. And then you send an email, write a letter, and make phone calls and you tell your story. It is our stories that, over time, have the propensity to fuel the most positive change. Why is that?

Our stories infuse political bills with humanity. Humanity makes these bills powerful, and sometimes, our humanity can change the course our very human politicians will take. Their yay or their nay.

One gift I have taken thus far from Partners in Policymaking is I seem to have missplaced my apathy.

Thank God for that.

And may we all find a niche in which to permanently dispose of this acrid state of personality.

SCHIP Vote Today!

Please, call your House Representative and urge them to override President Bush's veto of the SCHIP Bill. Go here if you aren't sure who or where to call to get this done. Hell, they'll even give you a script to read to them there.

Why is this important to me?

My family is important to me, my Gracie is important to me, and should this bill not pass my peanut will lose her Medicaid next year at our re-evaluation. We have private health insurance and secondary Medicaid for Gracie. Due to the fact that she is not considered disabled under federal standards, her Medicaid eligibility is determined by my income. Last year I was $200 dollars under the annual income cap for my family size. My annual 3% will put us up and over this cap. What will that mean for miss Gracie? We will no longer be able to afford her Occupational and Physical therapy. We have private insurance, but seriously, our percentages and copays for therapy would be more than my income could handle (something like $90 a week?).

It really makes you wonder about the current available healthcare system in the United States. Even the people that HAVE health insurance can't afford appropriate care. That's pretty sad.

Outside of my family, this affects so many families. Lower income families, or middle-income families, with no available and affordable health insurance. How is this justifiable? And why is it distorted into some kind of "socialist" movement when we try to insure the health and vitality of our future, our children? It makes no sense to me.

I'm hoping that the House restores my hope in America today. I guess my hopes aren't all that high though.

If you want some more facts, go here.

A Response to Michele Bachmann's Form Letter Regarding SCHIPS Bill

“Thank you for contacting me about the State Children's Health Insurance Program (SCHIP). I appreciate hearing from you on this important issue. Unfortunately, the program has become politicized, and Congress recently passed legislation to expand SCHIP coverage beyond children, beyond U.S. citizens, and beyond those who are truly in need, and that is where the problem lies.”

First of all, I would imagine that a program that must be politically approved is open to some measures of politicization. Assuming that politicization is bad, you are just as guilty as anyone else of politicizing this program.

SCHIP coverage moves beyond US citizens in the form of Emergency Medicaid. If you are not familiar with this program, I will help to enlighten you. Emergency Medicaid is created not to assist illegal immigrants (or rather those who are not US citizens) but rather to act as a safety net to hospitals that provide care to illegal immigrants in emergency situations. Hospitals cannot send an emergency patient away because they are not citizens. This is unethical, inhumane, and even were it ethical and humane it is not easily practiced (How exactly do you verify a patient is a citizen while said patient is having a heart attack?) It is near impossible to track these patients, or set any consequences for not paying the bill for this service. Emergency Medicaid was set up to give reimbursement to hospitals for what they would never be paid for as a result of following law as well as ethical standards. People who are not US citizens qualify only for Emergency Medicaid in “emergency” situations (i.e. traumas).

Adults who are covered under the SCHIP program are covered because said state has received a waiver from the federal government allowing them to do so. How does a state receive a waiver to cover adults, you ask? They receive a waiver to cover adults when they prove they are covering a large percentage of children who are eligible for the SCHIP program, and in doing so have money leftover with which the federal government allows that state to cover adults. In fact, you should know this Ms. Bachman as one state that receives this type of waiver is Minnesota! States that are under-serving their eligible children would NEVER qualify for this type of waiver to cover adults.

Another aspect of this bill is the removal of requirement to provide proof-of-citizenship to receive SCHIP benefits. In Wisconsin alone, there were 21,000 children whose SCHIP coverage was cancelled due to inability to provide proof-of citizenship (ie. birth certificate). Many of these children were known to be US citizens but did not provide proof. Eligible children are ending up not having the health insurance they qualify for because of a technicality. This provision attempts to accommodate for that sad fact.

“According to the U.S. Census Bureau, several million SCHIP-eligible children are still uninsured. Surely, children in need should have the health insurance promised to them before expanding SCHIP further up the income ladder or using more of the program's limited resources for adults.”

Each state should be held accountable for programs designed to help inform the public about the SCHIP program. Not all states have informed the public about SCHIP as well as Minnesota (again your state!) Perhaps they could take some cues from Minnesota to work harder to cover their children. Although, I do wonder how states not getting the word out to eligible children means that this SCHIP bill should not be approved. As stated previously (and you should know and understand this!) states that are not adequately insuring their eligible children would not be eligible for federal waivers to insure adults!

“Here's my idea. Let's cover the kids first. Let's focus on children in need without access to health insurance, and fund SCHIP as it was meant to be. I've publicly supported legislation that would accomplish these goals and keep SCHIP moving forward to help those it was intended to help. “

That is the goal of the current SCHIP bill!

“But some want to move SCHIP in the wrong direction. Under the bill passed by Congress and vetoed by the President, SCHIP dollars could be used to cover childless adults and more affluent families - in some cases, households earning up to $83,000 per year. It also changes current law to make it easier for illegal immigrants to get SCHIP funds.”

I’ve heard that $83,000 word flung far and wide like it actually affects more than one state. Ya, that’s right. That $83,000 cap is obtained by a waiver in New York State. Which makes sense in NYC. $83,000 in New York City is nothing like $83,000 in Minneapolis. In the state of Minnesota, the actual income limit would be just under $63,000 for a family of four. As far as the illegal immigrants and SCHIP funds comment goes, please see above. I would like to point out, though, that your misleading references in regards to how money in SCHIP is used are tiring.

“Rather than focusing on low-income, uninsured children, a Congressional Budget Office (CBO) study shows that more than 77 percent of children affected by this expansion already have personal, private health insurance. In other words, the bill creates an incentive that pushes kids out of private insurance into a government-run program.”

Have you ever heard of Medicaid fraud? I’ll help you out on this one. In the state of Minnesota, if you have affordable private health insurance (determined by employer paying at least 50% of premiums) it is ILLEGAL and FRAUDULENT and punishable by FINES and JAIL TIME should you drop your private affordable health insurance in lieu of the public SCHIP. There is more to this though. Did you know that the state of MN actually contracts with private health insurance companies to provide SCHIP coverage? That’s right. That means that the children and adults in the state of MN covered by SCHIP as a primary health insurance are covered by a private health insurance that is contracted by the state of MN.

So…………..Government run? Not exactly….Government paid for to promote our garish capitalist state? Absolutely.

“Worse, this legislation makes SCHIP financially unstable. In order to appear fiscally sound, it gives children health insurance for 5 years, and then it cuts SCHIP funding by nearly 80 percent - a classic bait and switch that will cause millions of American children to lose their health coverage.”

Well, this may be the one drawback I MAY agree with.

“According to the CBO, the bill will lead to only 800,000 currently eligible-but-unenrolled children being enrolled in SCHIP by 2012. The sad fact is that it would be cheaper to give each of these kids $72,000 than it would be to enact this bill, and it would probably show healthier results.”

I doubt that is the fact, but since you aren’t going to vote yes on this bill anyhow, where’s my 72 grand?

“Rather than playing politics with children's healthcare or scoring political points with radio and TV ads, I believe Congress should show the American people that we are here to solve problems, and I will continue encouraging House leaders to do the right thing by bringing up an SCHIP bill we can all support.”

Oh, do you mean that SCHIP bill that would end up cutting the number of eligible children, remove all eligibility for adult waivers (even if the kids in your state are covered to an overwhelming degree?), shut off Medicaid reimbursement for transportation services to disabled children, and would offer a “tax credit” to people who purchase affordable private health insurance? Oh, and just to cue you in, SCHIP is available to people who don’t have affordable health insurance available so they wouldn’t get that tax credit. Another clue concerning that? Most families on SCHIPS don’t make enough money to even PAY federal income tax, so what good is a tax credit on tax you don’t pay? No good, that’s how.

”Once again, thank you for contacting me. Please keep in touch.
Sincerely,
Michele Bachmann
Member of Congress”

Thanks for your support. I appreciate all the “politicization” you had to offer.