Community Support

Warning – I’m writing angry and off the cuff which probably breaks a lot of rules and is not very wise.

A few weeks ago my sister sent me this Tampa Bay Times article about warehousing children with disabilities, or cutting  support so drastically that medically complex kids end up living with the elderly in nursing homes. It’s an absolutely terrifying article and made me more than a little nauseous and I really encourage you to read it.

I get it; my kid is expensive. I’m certainly benefitting from your hard earned tax payer dollars much more than you are from mine. Oh wait, I hardly pay taxes because I only earn a tiny bit of money because I only work very part time. Why? Because the flexibility that is required of me in order to raise Aidan is not particularly conducive to regular employment (ok, and because I love teaching piano). Other Medical Moms have become solopreneurs as a solution to this same issue.

I’m well aware that I have received a great deal more support from my community than many families that are affected by disability. I’m humbled and grateful. Those are real people intervening in my life in a powerful and personal way. However, the use of the phrase Community Support or Community Programs in the Tampa Bay article, and in Disability World in general, is a pretty way of saying stuff your taxes pay for.

Your taxes pay for Aidan’s nurses/home health aides. We’ve always had amazing people working with Aidan. It’s weird having people in your home seeing all of your quirks, but we’ve been fortunate yet again. That being said, the questionnaires we sit through on a regular basis to make sure Aidan is still disabled are, well, exhausting. They’re necessary; I get it; I’m all for accountability. They’re just draining. I have a standing invitation to any State workers who write these questionnaires to come meet Aidan and sit through this hair pulling process with me. Here’s the other thing about this wonderful nursing care you’re paying for – it’s incredibly difficult to change agencies and they’re not always appropriately staffed. Just really. I can see all of you other Medical Moms nodding heartily in agreement. Again, I am just a little bit self employed so this isn’t as crucial to me as it is to many others who lose their jobs as a result of inconsistent or unreliable services.

You know what is crucial… Aidan sleeping safely at night. So here’s what I really wanted to say: I sent in a super huge packet of information, including a handsome picture of Aidan, a letter from me that included words like reprehensible, unconscionable, and disingenuous, tons of doctors notes, a copy of the ED notes and bill from Aidan falling out of his ridiculously unsafe bed, and our insurance’s very own handbook which states on page 41 that it specifically covers specialized hospital beds as durable medical equipment (strangely enough on pg 42 it specifically says that it doesn’t cover sports bras so save your angry letters) to an external third party review agency.

Today I got a phone call saying that Aidan’s bed has been denied for the final time. De-freekin-nied. They are sending a letter with more comprehensive information. I’m guessing, who wants to put money on this, that they’ll say they are happy to require insurance to cover XYZ bed which will be gobs less expensive but also won’t have solid rails, thus leaving Aidan at risk YET AGAIN for entrapment and falling out. There are so many angry frustrated un-churchy words running through my head right now.

It kind of feels less like community support or providing a service and more like keeping even the squeeky wheels silent. We shouldn’t have to be squeeky wheels. In fact, the care that I provide for Aidan (which I see as my responsibility as his mother and my joy because he’s so precious to me) saves the State more money than putting him in an institution. (That’s a bold faced claim that is totally unsubstantiated and coming mostly from the gut so I’m not even sure if it’s statistically true but I’m tired enough to say it.)

So how about we keep the Mamas happy and support families? Cause this fighting the man thing is exhausting and so is raising Aidan. But he’s cuter and arguably smarter too.

Let’s go back to the beginning. First, in no way am I saying that Aidan is at risk for being institutionalized. Second, the bed was denied by our private insurance, not our State insurance. That’s another sad, pathetic, long story that ends with no.

What I am saying is this; it’s moments like these when the truth about our need for community support/stuff your taxes pays for becomes very real. Kids with disabilities belong with their families, in their schools, in their community and often that gets expensive.

I tend to believe it’s a good way to spend my dough.

Buh-Bye PT Services*

If you give a therapist a pittance, they will take their services elsewhere.

If they take their services elsewhere, a chid will be left behind.

If a child is left behind, they may not do their best.

If they don’t do their best, they will need a therapist.

If they need a therapist later, you will pay more than a pittance.


Here’s how the budget madness works: the State decides to cut therapists’ pay when they bill the State. This becomes incompatible with making a living so therapists choose only to take private pay kids (*Aidan has both State insurance and private insurance so he’s not actually losing services). This leaves some kids without services. They may make fewer developmental gains and the gap between them and their peers may grow. Eventually, they’ll need MORE intervention to catch up or improve. It’s a robbing Peter to pay Paul scenario and this is the letter I wrote to my legislators. Feel free to personalize and use:

I am the mother of an 11 year old boy with a significant developmental disability. I have also been a board member of our Child Development Services and have witnessed the slow chipping away of services for the children of Maine. I’m greatly concerned with the direction MaineCare is going in impeding therapy for our children. My son Aidan has received OT, PT, and Speech over the years and his quality of life right now is directly related to those services. For example, he now uses a power wheelchair which gives him independent mobility. This would not have been possible without the expertise of his PT in choosing an appropriate chair and training him in how to use it. As a result, his cognitive skills have increased as well.

This is about more than just choosing our children because it’s the right thing to do, as I believe most people would agree with. This makes smart economic sense to invest in our children NOW. A child’s brain offers a wonderful but limited window of opportunity to makes the most gains. By reducing a child’s access to therapy when they’re young, you’re increasing the probability that they will need more services when they’re older. That’s not helpful for the child nor is it a wise use of taxpayer money.

In a budget crisis when the neediest families are already losing so much, please reconsider these detrimental actions.

Snipping the Budget

— 1 —

This week I received a letter from our Department of Health and Human Services. The way we receive respite hours is being completely changed. For those of you who have heard the phrase “balancing the budget on the backs of the elderly and disabled” I thought I’d give you a real life look into how that plays out.

— 2 —

First, what is respite, you ask? It’s a break. Of course, we all need one. The thing is, Aidan requires a level of physical and emotional care that goes beyond typical parenting. Basically, I find someone to watch Aidan, train her, and the State pays her. Easy peasy. If I had two neuro-typical children I could leave them with friends; we could swap childcare. Aidan cannot be absorbed into someone else’s family life. He has seizures and requires very close supervision, not to mention all of the other personal care he needs. This also means he can’t be watched by that very responsible and not too expensive high school babysitter.

— 3 —

That really sound like I, the taxpayer, am paying for your, Aidan’s family, babysitters. Um, yeah, kinda, and thanks for that. I can’t stand the “my life is harder than yours” pissing contest because parenting is hard no matter what and some people have more challenging circumstances than us. I will tell you, however, that this is an income based service. We don’t receive it automatically because of Aidan’s diagnosis (or lack thereof), but because the State has looked at our numbers and qualified us.

— 4 —

We’re in a recession so why are you complaining about making a sacrifice? Another great question. Actually, I didn’t complain the first two times (just in the past 6 months) they cut our hours for this very reason. Aidan was born in the time of plenty and we had more respite hours than we could possibly use. What we receive for the entire year now was what we received each quarter when he was born. Some may call that excessive. We never used it. So here are the three main reasons I’ve gone bonkers this time…..

— 5 —

First, we may be losing services until September because they need time to transition to this new way of doing things. Really? Did no one see this coming?

— 6 —

The new system makes it so much harder for me to find a respite provider. Before, I could hire who I wanted. That person was considered a private contractor and she and I would sign a slip to confirm the hours she worked. I sent that to the State and she got paid. Now that person has to be an employee of the State. She has to attend an extensive training (haven’t heard yet who pays for that) and get certified and put herself on a list to be available to other families, even if she only wants to work for us. This is not the kind of job that earns a living wage. It pays $9/hr with absolutely no benefits and never with any sort of guarantee of hours. This person will need to be supervised by the State instead of me (who is waaaay more qualified to decide who works with my child and how they’re doing). I’m wondering, since I generally only use my respite hours after 5pm, will the State come out and supervise at that time? Will I continue to lose this service if I don’t have someone at my house during regular work hours (which has never been the case before) because generally speaking, my respite providers already have full time jobs. The new system makes it more difficult to actually provide these services.

— 7 —

And this is my favorite, it should be yours too as these are your taxpayer dollars at work…..”Because of the cost of running this program with employees (instead of private contractors), there may be a reduction in the number of hours of services.” Translation: We’ve created MORE bureaucracy with the INTENT to save money which is done by providing LESS services and making things MORE complicated.

Any questions?

Stay tuned for the next edition: Snipping Therapy

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