Becoming Parker’s Mom kicked me out of the Shrinking Violet Society.  My membership was immediately revoked as my absolute need to find my voice took over.
I sometimes refer to this as when IÂ earned my Army Boots.
Because I am a member of an army. An army of parents who have children with special needs.
Why, you may be asking, do I refer to us as an army? Aren’t I being a teeny tiny bit dramatic?
- Well, imagine having to FIGHT for your child to be placed in a proper school environment, the least restrictive one, where they actually believe your child can learn.
- Or having to FIGHT your insurance company to pay what it says right in your paper work they’ll pay for. Unless your kid is born with an extra chromosome. Then all bets are off, baby.
- Then there’s the FIGHT against the word people love to use when describing how stupid THEY are by trying to compare themselves to your kid. (Oh, I know. They weren’t really talking about YOUR kid. They were talking about everybody else’s.)
Or how about the fight to get a bit of help with keeping your kid alive?  Do you know how hard it is to qualify for a Medicaid Waiver or DSPD in the state of Utah?
Did you know that last year a 2 million dollar cut was mandated for the Department of Health and Human Services? And did you know that often, during committee meetings within the DOH they look at the legislative mandates and figure if they can cut a few kids off the waiver, make the DSPD lines longer, and up the qualification of the acuity grids to the point where a kid already needs to be dead to qualify, well then they can take an early lunch and be done with it.
Okay. So maybe it isn’t that simple.
But I do wish I had a dime for every time I’ve been told that a decision has been made ‘in committee’ which is code for ‘ ain’t nobody here taking responsibility for that decision.‘
Then there are those who believe that any and all federal funding for Medicaid, DSPD, etc., should be denied.
And the ones who send me emails telling me that by accepting Medicaid for Parker I am in fact holding a GUN TO THEIR HEADS AND ROBBING THEM!
(Hell, I don’t even have time for a shower most days, much less planning an armed robbery.)
Or, my favorite. If you have a child with special needs who needs help, go to your neighbors and host a BBQ to raise those funds!
Whether or not you believe health care is a right , I happen to believe that protecting our social safety nets is the right thing to do. And I’d be willing to bet that if it were YOUR child’s life on the line, you’d agree.
Because of this, I’ve set up a meeting with Senator Dan Liljenquist, Representative John Dougall, and Holly Richardson from Holly on the Hill fame.
The subject?
Reforming Medicaid.
Dan has a lot of ideas for returning Medicaid back to those it was originally intended for. Kids with special needs. People with disabilities. Those who are spending their lives at the American Fork Developmental Center.
And not just my kid. BUT YOUR KID TOO. Yes. You read that right. I’m willing to fight for YOUR KID TOO.
To let you know how important this meeting is allow me to share with you one of the 3 emails I received today from member of Utah’s Young Republicans.
ahem.
In this email I was informed that directly after Senator Liljenquist finishes speaking at the meeting I’ve set up, he’ll go directly to the UYR meeting where he’ll be speaking to a group of people that want to DO AWAY with any kind of Medicaid at all.
Including the kind your kid may be receiving. Or one day hopes to receive.
So, you see. This isn’t just about Parker. It’s about every kid who relies on a safety net to stay alive.
And that includes those of you who currently subscribe to HIP Utah and other programs of the same nature. Cause guess where this funding comes from?
Tax dollars. Including Federal Tax dollars.
It really is true that knowledge is power.
And Thursday’s meeting is all about gaining some knowledge.
And maybe telling a certain local Legislative Representative that the whole ‘Host a BBQ” theory really doesn’t pan out in reality. (But don’t tell him I told you to do that, k? heh)
I hope to see you there!
When: Thursday, January 13th
Time: 5:00-6:30 p.m. (yeah, I know it’s dinner time. maybe just this once you could feed the family pb&js so you can make it?)
Where: Highland Elementary in Highland, Utah
10865 North 6000 West Highland, Utah
Twitter: Alicecrumbs
says:
Oh man, you FIGHT. In the UK things are much less complicated, and for all its failings the NHS is incredible and amazingly fair. I am just so sorry you have to fight at all. Keep going and thank you for working so hard. Xxx
I am really going to try and get down there. Its really sad what has happened to medicaid. People give me the evil eye if I say Jax needs medicaid, because medicaid has turned into insurance for people that don’t want to get jobs and live off welfare for 10 years or more! That is ridiculous! Like I’ve said a billion times, I have fantastic insurance, but its not enough for these million dollar kids. Its not my fault they charge outrageous prices. Maybe if the government had fixed that problem, we wouldn’t need medicaid as a secondary!
Lacey and Jax recently posted..Do we have to be grown-ups
Dear Lacey,
BE THERE. k? hee,hee
Good Luck – I don’t live in UT or I would be right there, fighting with you. My kids are on Medicaid in the state of OH and it’s a mess. They instituted managed care programs a few years back – but if you have a disabled/special needs child you can still receive traditional Medicaid. So I have 3 kids on traditional and one on Managed care – which means I’m really dealing with 2 different insurance plans.
Good luck – it’s tough to take a stand and make a difference. I applaud you.
~amy
Amy Hillis recently posted..I am not a Saint
If I wasn’t so far away I would come! I think this is wonderful what you’re doing. Please keep up the good work! I look forward to hearing about the outcome of the meeting. Tomorrow we are having a conference call about Medicaid in our state whose DHHS has a $228 million deficit.
Good for you. You fight for what you deserve. I am in Canada. I have to fight for some things but nothing like you have to. Hugs and Power to Yah.
Twitter: valmg
says:
You never cease to inspire me. This is incredible. If I were in UT and not NJ I’d definitely be there.
Have you considered going to the Buddy Walk on DC in February? I can send you the info I have.
Just found this. I was searching because of your comment on John’s site about ASD special needs services. I would love to share opinions with your sometime. I am a speech therapist for ASD. I work in preschools for children with special needs as well as at 3 secondary schools and there again, most of my work is with children with special needs. I’m with ya–kids belong in the least restrictive environment in which they can succeed. I am also an educational consultant for the High/Scope Education Foundation based in Ypsilanti Michigan. I help with the SPED side of it. I also co-wrote the book “I Belong, And Active Learning Approach to Early Education of Children With Special Needs”. I co-wrote it with Terri Mitchell (an amazing early childhood education guru) who heads up early education in the Canyons District. Anyway–enough about me. I would love to get a parent’s perspective on things.
P. S. Medicaid, although far too confusing for me, is a heart wrenching thing for me. I agree with you whole heartedly and wish I would have known about the meeting. I also wish I was as articulate as you. Do people really accuse you of robbery?
I read your blog on and off- at this point I don’t even know how I found it though! I have a three year old (VACTERLS-H, Hyperinsulisim, and a buttload of other medical dx) who receives Medicaid through Katie Beckett as secondary coverage. I am a state employee, married to a man who runs a small business, and on the PTA. Sometimes I have people tell me that we are “lucky” to be part of the system and have Medicaid for him. Hhhmmmppph….it was not luck that got him Medicaid, it was this momma who knocked heads together, filled out hours of paperwork, and brought in three boxes of medical records in the middle of a blizzard to a social security office an hour from our home. He could not have gone home from the NICU without Medicaid as he has tens of thousands of dollars per month of medical claims for nursing, meds, equipment, etc. I have to try very hard to not snap their heads off that they feel I am lucky to receive something that my child is entitled to in order to keep him alive. Kudos to you for standing up and advocating! Lori
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