Friday, April 29, 2011

pics and some news

Bohdan after swimming, cuddled in a blanket. The boy is such a cuddler!

Working with his OT, Kimi. He was sitting up like such a big boy and was having a blast!


Caius playing by the pool.


Asher Easter egg hunting.

So I have been trying and trying, calling and working on getting Yuri services, therapies, anything. The child needs help. So today we met with a social worker and a nurse to try and enlist the three SN kiddos in a Medicaid waiver program. What would this mean? It means that we could actually get therapies for Yuri. I could get respite. Bohdan could get therapies after his birthday.

To qualify you have to show a medical need to receive this help. Caius might qualify since he has a G-tube but it is unlikely the other two will. Can I just say.... GRRRRRRR!!!!

I'm so irritated. All I want is for Yuri to get help but it is seeming impossible. We have good insurance but no home health companies will take us because we don't have a Medicaid backup.

I have kinda been putting all my hopes in this basket. I have been told by more than one professional that Yuri should qualify but now it is not looking so good. Please pray that he qualifies.

I'm meeting with a woman this afternoon to continue trying to get him into the school system where he can get some therapies even though it won't be as intensive as he needs.

9 comments:

  1. I am from RI..and we have the Katie Beckett waiver. Is that the waiver you have in your state? If so, I could share what I learned over the years in qualifying my son for the waiver. Seeing how both of your boys were actually 'instituationalized" in their home country...they would certainly qualify for the waiver. I don't want to make any assumptions about their level of function, but from what you have wrote about them, and just knowing the conditions of the orphanage in whcih they came...I assume both must have global delays. Just that alone 'should' get you services in your states Early Intervention program. I can't see how for at least Bodhan (with the Ds diagnosis) wouldn't be getting services. I'd love to chat more and help any way I can. I've battled the waiver in my state and would share anything I know. I have a 5 yr old son with Ds...so I know I can help from that standpoint. Please email me, or if you are on facebook..friend me. Can you see my email from my profile?

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  2. In my state, Connecticut, there is a program called Birth to 3 through which children receive therapies through the age of three. After that, and I believe this is a federal mandate not a state mandate, your local school system is required to provide WHATEVER services your child needs through the age of 21. You have to have evals, IEPs, etc. You may have to fight with them because the school systems don't like to give any more services than they have to, but it sounds like Yuri should qualify. Best of luck to you!

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  3. I wouldn't that be great if you could get Yuri help and a little respite for yourself. What a blessing that would be. I will pray for this. Your secret admirer :)

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  4. That's really unfortunate. I'm sorry to hear that you're having a difficult time getting therapy and services for Yuri.

    Is there a way that you can get Medicaid backup? (I'm not familiar with the system, so I don't know how it works.)

    In the interim, I'd do as much research as possible into the various therapies that would be performed with Yuri. I'm sure your physician can give you some direction in this area. Once you know what exercises, activities, etc. would be performed, I'm sure you can do many on your own with him at home.

    If money is the issue, I'd look into medical schools in your area. Some have clinics where students offer services (under the close supervision of an experienced teacher.) There's usually low, if any, cost associated with this.
    I've had physical therapy at one of these clinics; I had a bunch of free dental work performed at another clinic run by a dental school. I've even had massages and facials at a local aesthetician's school!
    In all honesty, I think the services at student clinics are *better* than those available elsewhere from experienced dentists/PTs/aestheticians, etc. The students always seem very precise and you could tell they were doing their absolute best work, plus the instructors were always right there. I never felt uncomfortable, and they didn't "seem" like students (they clearly knew what they were doing; this wasn't their first go!)

    Ellie

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  5. Yes very fustrating. Praying it all comes together for you. I hope Yuri gets the help he needs.

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  6. We have been through this process - email me privately at lil_red_xlr8r (at) hotmail.com. I may have some insight that could be rather helpful.

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  7. Oh goodness, I hope that Yuri qualifies. That would be ridiculous if they deny him - after all he has been through. Thanks for letting us know how to pray for you...

    I hope to hear good things soon!

    God bless.

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  8. Yes sadly the waiver program you talk about is extremely hard to get into. I've been told you have to be "close to dying" to get into it no matter what state you are in. That is probably an exageration but somewhat true from my own experience. For us being on dialysis was close to getting in but now post transplant, not thinkable since he's doing so well. Having the g-tube doesn't matter for my son. We make too much to qualify for SSI. If Yuri is aging out of birth to 3 programs, he should be eligible through the school system for 3yr old special needs preschool. That's the route we took. I also found separate physical therapy outside of school that insurance covers but I had to uncover those rocks myself-admittedly this is a hard road!
    I did find these links, if I recall you are in TX? Maybe you can be guided to other help through them? http://lists.topica.com/lists/txvifamily/
    http://www.tsbvi.edu/parent-portal
    http://www.dars.state.tx.us/dbs/DBSoffices.asp

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