Need Advice Please

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

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Need Advice Please

Postby BeThereMom » Sat Jul 09, 2011 1:02 pm

SS told me yesterday that my husband and I make too much money to get disability for our 12 year old to help pay for home care equipment and remodeling our home to be wheelchair friendly for her. So that's it? Told me to try to get her qualified for Medicaid. Does this sound right? Is there nothing we can do?
Mom of 11yr. old daughter, Elaina
idiopathic syringomyelia, large syrinx at t5-t7
permanent shunt since 12-22-09
My girl is one tough cookie, people believe her smile through the pain.
Posts: 17
Joined: Thu Oct 08, 2009 7:51 pm
Location: Asheville, NC

Re: Need Advice Please

Postby lttutrow » Sun Jul 10, 2011 4:43 pm

You might want to check into Medicaid for help with home care equipment. Some states also offer a Medicaid Waiver program that will pay for adaptations to bathrooms to make your home accessible. Some private insurances will pay for home care equipment too, and there are grants in some states as well. You could call your local ARC office, they may be able to help you.
Posts: 410
Joined: Fri May 02, 2008 10:16 pm

Re: Need Advice Please

Postby Becky1219 » Tue Jul 26, 2011 8:28 pm

Yes that is how it works. We have the medicaid waiver for my son. There is sometimes a waiting list and it can be a hassle to keep fighting to get it, but well worth it in the end. It really helps with all his medical costs. We do have private insurance as well, so the medicaid is secondary and picks up most of our co-pays and deductible costs. The waiver also covers home nursing hours if that is a need.
Becky, wife to Mike, mom to Logan 4/3/04 and Jack 5/4/07 30 weeker EA/TEF, bowel perforation, CM1, SM, TCS, hydrocephalus, metopic synostosis, thin corpus callosum, decreased myelin, and the many issues that go along with these
Posts: 24
Joined: Sun Jun 21, 2009 8:59 pm
Location: Indiana

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