DownSyn Forum

DanielsMommy

OMG, I am fuming mad. Daniel has had the Katie Beckett MA waiver since he was born.

This year was his clinical certification and apparently....he isn't medically fragile enough to qualify. UGH!!!! DS isn't enough on its own.

Now, it's a double edge sword here...who wants their kid to be any more medically involved than they need to be...but we NEED this coverage. It allows Daniel to have Kids Connect which is extra support and therapy at daycare. Without it...he is just a regular kid in daycare without any extra support.

She said he was denied because he doesn't require the institutional level of care required by KB. So, since his heart was successfully repaired....it's a non issue NOT!!!!

So, there is an appeal process....so far this is what I am doing..please help me with more ideas. Additionally, his school sent 2008 progress...so that alone might help in the appeal.

1. Going back to cardio to write up a detailed summar of what CHD means
2. ENT - write up summary to include sleep apnea.
3. Kids connect (daycare support) to give them their evaulation.
4. More detailed parent summary (could use some input on things to include).
5. Current school assessment (the one they sent was from 2008)

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Lisa - Mommy to Elayna 10-1-02 and Daniel (Ds) 6-7-05
Always have hope....Without rain, there can be no rainbows.

Momof6 · Posted: February 08 2010, 1:19 PM Post subject:

Wow, that's just crazy. Thoughts and prayers that the appeal works for you.

Have they asked you yet if he'll out grow the ds? I had some lady on the phone one day from Total Care ask me if Austin would out grow ds. When I got done with her, I'm real sure she was close to running out the door to never return. Any best of luck. Praying for you and your little man to get what he needs.

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~Christine~
Mom of 6
Brandon ADD/ADHD 17, Chelsea 14, Connor 12, Logan 6, Cody 4 & Austin 1 ( DS & Hirschsprungs pull through 12/8/08 )
http://www.caringbridge.org/visit/austinpaquin

burnsun · Posted: February 08 2010, 1:39 PM Post subject:

I know every state is different........ in our state it has to "instituion level" which in the case of my five....... is Devon only.....

Miranda met qualifications when she turned five.....and will wait for the list and to get to the top.....maybe July maybe never........

Ours is not the katie becket type because we recieve medicaid with their adoptions (since US children) but it is a waiver which helps me with about half the funding for my kid wranglers (my two helpers one in morning (2 hours) & evening (4 hours) and weekend outing when Eric is not here)....like a PCA ....... I hope to eventually qualify all the kids as they get older so we can keep them in place...... much better at $1500 month than the cost for instituionalization......... but who knows if or when

We had to send IQ tests all medical tests......letters from all doctors. the denials of items that we needed covered from our regular insurance...... our ssi qualification for disability (the kids had these from when they were in the system) their IEP's which state MR and other ongoing needs and issues and "standard deviations from norm comparisons.......

but I will tell you that with budget cuts and all the people yelling about socialism and how we do not need "crap" like that....... budgets are cut to minimu cause you the parent are suppossed to take care of all his need
and in most states Daniel would not qualify now that his heart is repaired and you would not institutionalize him.

I had to sign a legal paper saying that without help..... keeping devon at home would be finalciually a problem and we would consider turning him over to the state for institutionalization....... (ironic he just came from that...... but it was a paper....... had to be signed.......to get the program here)

Good luck!!!!!!!!!!!!!!!!

_________________
Jane
mom to
Colin Miguel (11/19/00) DS
Devon Richard(4/13/01) DS & Autism
Melea Isabelle(2/13/02) DS
Adrian Elliott (7/04/03)
Eliza Marisol (5/15/04) DS
Miranda Olivia (2/1/05) DS & Partial Complex Seisure Disorder & iratractable epilepsy
Jordan Alexander(3/17/2007)
Emerson James (1/08/2009) 33 week preemie

wife to the best & greatest guy Eric

http://princessgrumpy.blogspot.com/
read about the daily adventures of Princess grumpy and her special siblings and their daily adventures

http://thegrumpyfamily.blogspot.com/
the family blog of our unique & special family

Georgianna · Posted: February 08 2010, 3:18 PM Post subject:

Down syndrome alone isn't enough to get medicaid in Arizona either. Renee gets it because she has some pretty complicated health issues which they deem severe enough to be institutionable. I don't know many kids around here that have the long term care coverage that we get though.

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Georgianna, mom to Ryan (12) and Renee (10.5 w/ DS and Cystic Fibrosis)

Ibby · Posted: February 08 2010, 3:54 PM Post subject:

Is the Katie Beckett the only waiver in your state? In Iowa, we have several different waivers which a child can qualify for. I work in the waiver program for Iowa. I wish there was a way to help you....I'm so sorry this is happening for you!!

Ibby

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Ibby
Wife to Tim- 22 years. Mother to Maggie,21; Bridget,19; Kevin,17; Sean,15; Daniel,12; Catherine,11; Robert,8; Emily,7; Maria,5; Hope, 4, AJ (Ds) June 14, 2006

http://www.onetruemedia.com/shared?p=26012b09b29bd00fe629cb&skin_id=0&utm_source=otm&utm_medium=text_url

LinMac · Posted: February 09 2010, 4:21 AM Post subject:

Lisa

I know the KB Waiver means so much to Daniel and your family!
The system is very different here in Ireland so I can't advice.
I'll pray you get a good out come from your appeal.
Go for it girl....and good luck!

_________________
Linda & John
mom to Hannah Kate (Age 12 ), Robert (Aged 6 - DS)

First day at school

esamy · Posted: February 09 2010, 4:43 AM Post subject: same rubbish all over the place

some days get you down when you feel like all you do is fight for the things you need. Were I am in Australia we are funded for aides who work with the children in the classroom. Erin only qualified for 10 hours a week because she did not have behavior or health issues yet she needed the help for academic reasons, no matter who I spoke to or what I said it didn`t matter...... so frustrating. Keep on fighting you get better at it Very Happy

happymom · Posted: February 09 2010, 9:39 PM Post subject:

We've been trying since Netanel was born. There is no waiver for DS in MD. I know what things cost out-of-pocket so I feel for you. I really hope you find a way to get it.

_________________
Married ,Mommy to 8
girl 24 married with dd & baby boy 3/21/09, boy23 married with baby boy 11/30/08, boy 21, girl 18,girl 16, boy 13, boy 11, Netanel 4 with Down syn

Supernova · Posted: February 09 2010, 9:51 PM Post subject:

Uuugh, I feel your frustration! Is there an advocacy group in your area for people with disabilities? There is a place like that here that is run by parents, lawyers, and parents who are lawyers..LOL. I call them before I meet with Novas "case workers" to see what exactly I can go in demanding for my child, what our rights are.
What is wrong with the priorities of our health care system??

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Supernova · Posted: February 09 2010, 9:53 PM Post subject:

http://www.ridlc.org/
I found this...if you're not already connected..they might be of some help..
Good luck with this.

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eli'smommy · Posted: February 10 2010, 8:59 AM Post subject:

You might already do this, but just incase here are some of my suggestions.
* Make it personal - I make it like a book with chapters and with each chapter I have a picture of Eli - Usually have around 10 pictures. I feel if they see his face they will see him as a person.

* I include a daily scedule for Elijah. Pointing out how much time you have to spend with therapy and continuing with it all week long.

* I write a letter about Elijah and describe where he is at medically and developmentally. With Elijah we go to the pediatrician 15-20 times a year, and I compare him going to how many times my neice goes - which is usually 3 times a year. If there is anything medically with Daniel include it with notes of the visit from the doctor.
I get a print out of all the prescriptions we have had filled throughout the year.
I hope some of this will help. I could probably come up with some other stuff, but you might already do this. If you have any other questions feel free to PM me.
Good Luck. I know it is so stressful to think you will not get approved.

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Melissa
Elijah 4
Gavin 8 months

Michel · Posted: February 10 2010, 12:17 PM Post subject:

There have been some several suggestions here. New York State also has several types of waivers for children with chronic health issues and/or developmental delays. Also are there any advocacy agencies that can provide help in your state.

Sending positive thoughts and prayers,
Namaste,
Michel

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Mom to Beth(excelling @ 17) and Mikey(12-Ds, PDD-NOS, asthma, GERD, chronic sinusitis, sub-glottic stenosis, tracheo-laryngomalacia, and that is quite enough thank you!