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Old 09-07-2009, 09:29 AM   #41
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Re: What happens when I can't take care of my child any more?

Have you tried contacting Shriner's International? I know that some of the children I have worked with in preschool situations in the past have recieved equipment from the hospital in town for very little money. They might be able to help out with at least a lift or a pushchair for your wee one. Also, you mentioned that your son has low vision and wears hearing aids? Has anyone talked with you about manual communication? It is a way of signing into the child's hand so that they can communicate even though they cannot see visual signs or hear verbal directions. Depending on his physical delays he may not neccessarily be able to sign back, but he might be able to understand you that way.

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Old 09-07-2009, 07:45 PM   #42
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Re: What happens when I can't take care of my child any more?

Yes, the amount of money you receive from SSI is income based, however the services he would qualify for as a disabled child are not. There is not level of disability. SSI basically says either you are or are not disabled, and based on your income, here's how much money we give you. That's the federal part of it. The medicaid is left up to each state. Now, since you DO receive it, he does qualify for medical. I guess in OH, it's a waiver program. In my state, everyone on SSI automatically gets medicaid. It's used primary or secondary depending on the child's situation. A lot of case workers simply don't want to do the footwork. It's sad, but it's true. If you aren't getting answers or info. from your worker, talk to another. Definitely apply for the waiver and pay no attention to what they say about wait time. Once you have the waiver in hand, it will pay for nursing, lifts, bath chairs and yes even a wheelchair/SN stroller. Sometimes you have to fight them, sometimes not...but eventually they will pay for a kid with the needs it seems your ds has.
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Old 09-07-2009, 07:55 PM   #43
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Re: What happens when I can't take care of my child any more?

Mama I just wanted to say I dont have any advice but it sounds like some of the other Mama's gave a lot of good info definitely get on the waiting list!
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Old 09-10-2009, 02:51 AM   #44
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Re: What happens when I can't take care of my child any more?

Every state offers different programs. We just moved from TN to TX. We had never had any kind of home health nursing or any assistance with our SN kids. But here in TX we qualify for round the clock nursing assistance. We dont use all the hours though. But I wouldnt have known we qualified if it werent for a Special Needs Pediatrician here. They have totally hooked us up with every kind of assistance we qualify for. I hope you find someone who can help you out like that!
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Old 09-10-2009, 08:31 AM   #45
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Re: What happens when I can't take care of my child any more?

If you cannot get medicaid due to income, have you tried BCMH? We are in the same boat, our income/worth is too high to qualify for SSI/disability or medicaid for DS (and I am NOT cashing in my life insurance to get it) BUT BCMH (bureau for children with medical handicaps) is a program in Ohio that will cover co-pays and equipment and even home health care.

1-800-755-4769 is their phone number, although they are very hard to get ahold of, I would call the Cuyahoga County board of MRDD and ask to meet with someone there.

http://www.odh.ohio.gov/odhPrograms/.../cmhprog1.aspx
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Old 09-10-2009, 03:41 PM   #46
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Re: What happens when I can't take care of my child any more?

I couldn't read this without posting. (((hugs))) mama.
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Old 09-11-2009, 09:12 AM   #47
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Re: What happens when I can't take care of my child any more?

He shouldn't qualify for regular medicaid, but if he gets ssi, then he sure the heck should qualify for disability medicaid. Totally different thing. I would start making lots of calls....and keep at it, my mom always said 'the squeaky wheel gets the grease'
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Old 09-15-2009, 10:28 AM   #48
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Re: What happens when I can't take care of my child any more?

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