Disability Services: More of the Same

I mentioned in my previous post that a woman from our parish called to tell me that they would be reviewing Charlie’s case again to see if we  qualified for more services than we are currently receiving (now we get none). Frankly, I was shocked. Louisiana is one of a handful of states that has a waiting list for in-home services. Basically, if you are a disabled minor in Louisiana, they put your name on a waiting list and after about eight or nine years, you might actually get some type of help.

Help can come in all shapes and sizes–modification to your home to make it wheelchair accessible, a respite worker, or maybe a care individual to help with bathing. The best part of the deal is that your child gets a Medicaid card–Medicaid is known for paying for equipment when private insurance won’t.

These all sound like nice things, but like I said, eight or nine year wait, so I wasn’t exactly holding my breath.

So a call telling me our case is up for review is a little strange. I’m not getting my hopes up or anything, but it is interesting. I had to answer a few questions so they had an accurate report for the review committee. The woman on the phone ran through a list to describe Charlie:

  • Long term need for a wheelchair
  • Brain damage
  • Epilepsy
  • Limited vision
  • Limited use of his arms
  • No use of his legs
  • Non-verbal

And man, that’s a tough description.  It’s hard to think of my child as a list of deficits.

So, for the sake of my sanity, I made my own list. Charlie is also:

  • Determined
  • Resilient
  • Spoiled
  • Adorable
  • Analytical
  • Sneaky
  • Curious

He is many things and while I understand the importantance of measuring his limitations, a list of them does not do him justice.

Child in Wheelchair

Charlie is getting a molar, so I can’t get that hand out of his mouth these days.

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  1. Whether it’s strange or not, I hope it works out well for you. It’s strange in a GOOD way, at least! Thanks again for driving today. I owe you lunch one of these days!

  2. Sweet, Charlie. Sweet, Birdy. I love this heart of yours.

  3. He sure looks good in that chair!

  4. And oh so handsome he is!

  5. Well said Katy – a list of his limitations does not do him justice. And he is beyond adorable, he really is very, very handsome. I do hope you get some services to help your well deserving family. In Utah, applying for assistance for adults who have aged out of the school support system is ridiculously ineffective. A state law allows the agency to deny benefits if there is no funding in the account, and of course the Legislature only ever takes away and never actually gives more in benefits. People have honestly waited 15 years or more to begin receiving help. I knew of a family who had to pay back money received for respite care for an adult with Down’s because her mother, a widow with a railroad pension, had received a cost of living increase of something like 2%, so her services had to be cut. Absolutely absurd. It is one of those things that make me proud to be a tax and spend liberal, and glad to see that blogs like yours share info with parents to remind them to plan for their special needs kids for the future, ’cause you can’t trust the community resources to be there. Oh yeah, I better get on that.

    Blog redesign a huge success!

  6. Let’s not forget… Cherished and Happy!!

  7. He’s a slick, Airwalk wearin’, little fella who is already moving mountains!

  8. We are up for review also. Our Department of Developmental Disabilites (DDD) got some funding opened up….so we’ll see, too!

    I just read through the report from the Metobolic doctor visit….I’ll never get used to reading about my son the way those reports are written!

    Good luck!

    And I love the new blog design!

  9. When G was Charlie’s age, I’d rattle off the laundry list of his diagnoses… and never could have imagined the 7 year old boy that he is today. Charlie will surprise you.. and make you laugh at that list.

  10. When we were getting evaluated for SSI (disability) I told all of his therapists and coordinators to give him the worst review. I told them not to look on the “bright side” when talking to them about our son. I wanted to make sure we got services. Of course, I would never want them to tell me what they told them.
    Good luck! Hopefully you’ll have a better time then I did/do. I always seem to jump through a million hoops when it comes to dealing with the government, lol.

  11. ANY ‘technical’ review/diagnosis/evaluation is a tough horse pill to swallow. No matter who you are or what ‘level’ of disability your kid has, it always takes strength to make it through the nitty-gritty of these ‘evals’ or descriptions. I hate it personally, always bums me right the F out.

    We are lucky though…Ohio, while being the most boring state in the Union does have excellent services for the disabled. We have a Nurse’s Aide, in the house for up to 54 hours a week, and we can’t even use all 54 hours of it. His Medicaid Waiver we applied for through the state and got (though it has to be reviewed annually, something we are doing now) pays 100% of his tuition at the Autism academy he attends, and might continue to do so after he is supposed to enter Kindergarten if he hasn’t ‘caught-up’, which we don’t think he will, not by then, if ever.

    So yeah…Ohio sucks but at least the disabled services are great and all three of my AFC North opponents are within fairly short driving distance so I can see my team play live (if I choose) three times a year without going all the way back to Baltimore.

  12. He looks absolutely beautiful sitting there in his chair!!

  13. i love that you made your own list. as a louisiana resident i could only snicker at the efficacy of our dhh in action 😉

  14. I am so happy to hear that your case is up for review. Charlie is such an adorable boy. Also your site redesign looks awesome! Love the clean fresh look :)

  15. MelissaInk Designs says:

    Hey, Katy. Finally got to visit your new site! Very cute. I’ll be sure to add your button if/when I finally make sense of my little section of the blogosphere.

    I’ve never thought of your son as having “deficits.” When I think of your blog and of Charlie, I think of that latter list. Good for you.

  16. He is such a cutie. Good idea to make a better list put up on your mirror. Well you don’t need to actually cause you are his champion.
    hugs to you!

  17. OK…Here goes – mine are 16 so I am unsure if I will be of any help to you and Charlie.
    Your list of deficits will be different per each system… the mental health system will shove you off to the mental retardation (developmental disability) system and then you will be moved to the educational system and back an forth through his health insurance… one tries to have the other pay for services.
    Use the nasty deficits for each system and you’ll learn one by one the “power words” for each to obtain what he needs. Please look up Kathie Snow (Disabilities is Natural) and you will be in love! She taught me so much. Good luck to you, your family and to Charlie! He is incredible! He will do amazing things and be your best teacher ever!