Guest guest Posted January 3, 2004 Report Share Posted January 3, 2004 Depending on what state you live in, there are programs called Medical Assistance Waiver programs. They are not income based, they are based on diagnosis and medical expenses. We lost our SSDI very early on for the same reason and put our son on the " Becket model waiver" program in MD and then later the REM program, which is the Rare and Expensive Medical Expenses program. You just have to make lots of noise at the right people. It's a total pain in the butt that they make it so hard, but if you look hard enough there are programs designed for the middle class familles with kids with expensive medical costs that are not covered by traditional insurance. Mom to Bill(DS), , Alec (all age 8) and Hunter (age 6)..and a nurse so I know the "system" from both sides! :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 Deanna, Does have a DDD caseworker? I know ours could certainly help. What about the current PT/OT, would they write a letter about the need of his continued services? I know 's Medicaid is tied through DDD. Because she has a specific diagnosis that is covered, she gets medicaid lifelong, regardless of my income, even though her twin brother (non-DS) does not have the same insurance. Our SSI is income based, but we qualify anyway, and I had a helpful worker who let me know what the income cap was to continue receiving it --so I don't go over by $50 and end up losing it! Good luck! What state are you in? I can't remember, sorry, but maybe we have someone on the list in the same state, or with a relative/friend in your state who might be able to help. Let us know! There has to be a way around this! Casey, mom to (DS) and , 3 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2004 Report Share Posted January 4, 2004 Deanna, I'm sorry but I have no experience with this issue you're facing, BUT, I would get to the bottom of it, get all acurate facts, and if you have to call your local newspaper, and news station if necessary??? Any relative with a legal backround??? Good luck!! Gail, Mom to Bobby, 9 3/4, Jillian 7 1/2, and Tara {Ds} 4 1/2 > > I am curious if any of you have problems with getting medicaid > coverage for your special kids. I got a letter on the 1St, probably > the day before, anyway, they said would be denied his medicaid > next month. I just started working as his nurse 4 mos ago. when they > cut his medicaid he will have no insurance, no nursing hours, no > PT/OT. WHY? He is disabled for life and can't even eat by mouth!! I am > so mad. He is only 11 mos old and they are cutting off everything he > so desperately needs. There are people who get SSDI and can actually > still hold a job....my kids paternal Grandpa is one. He goes tootin > around in his motor home, goes boat riding and fishing, yet gets SSDI > because he " can't work " . Whatever! deserves help and will be > cut off. I hate this country and system. He was denied SSDI because he > is a minor and I am currently bringing in an income. They said he > couldn't get it til he's 18 yrs old. I don't understand. How can I > fight these people. This is my child, not a piece of trash. Animals > have more rights in this country than special needs kids. I am mad, > sorry to spew. Anyone have advice for me. All I can say is Happy > Freakin New Year to us. I thought this year would bring blessings and > joy, but instead more worry and pain. I lost Jordan last Feb, I REFUSE > to sit by and let them railroad 's rights as a child, a human being! > Deanna > > http://DSyndrome.com/Multiples > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2004 Report Share Posted January 5, 2004 Deanna: I second what posted below. Also, sometimes the medicaid waiver programs are called " TEFRA " by different states, so do a search for that in your state also. Plus, wouldn't 's OT/PT services be covered by ECI and not medicaid? I thought that was a state run program usually run for free or as I'm finding out , some states charge a nominal " co-pay " based on income. Just be glad you don't live in Texas. Finding out about the medicaid waiver programs here is a nightmare - plus there's a waiting list, years long, that the boys may never even get to the top of before they turn 18 and qualify for SSID on their own! Take care and I hope you had/have a happy new year! Judi-Mom to Sam & 7! Identical Twins Judi Grossman Contracting Officer (7PMA) Program Support Division - Phone - Fax judi.grossman@... Multiples-DS@yahoo To: Multiples-DS groups.com cc: (bcc: Judith M. Grossman/7P/R07/GSA/GOV) Subject: Digest Number 1467 01/04/2004 02:45 PM Please respond to Multiples-DS There is 1 message in this issue. Topics in this digest: 1. Re: New Year woes From: shellhutch@... ________________________________________________________________________ ________________________________________________________________________ Message: 1 Date: Sat, 3 Jan 2004 16:46:42 EST From: shellhutch@... Subject: Re: New Year woes Depending on what state you live in, there are programs called Medical Assistance Waiver programs. They are not income based, they are based on diagnosis and medical expenses. We lost our SSDI very early on for the same reason and put our son on the " Becket model waiver " program in MD and then later the REM program, which is the Rare and Expensive Medical Expenses program. You just have to make lots of noise at the right people. It's a total pain in the butt that they make it so hard, but if you look hard enough there are programs designed for the middle class familles with kids with expensive medical costs that are not covered by traditional insurance. Mom to Bill(DS), , Alec (all age 8) and Hunter (age 6)..and a nurse so I know the " system " from both sides! :-) [This message contained attachments] ________________________________________________________________________ ________________________________________________________________________ http://DSyndrome.com/Multiples ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
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