10 year waiting list for medicaid autism waiver

Anlo

We just started this process and this is what the worker told me on the phone when making our appointment with an intake caseworker. After I hung up the phone I cried. How do people do this? I'm so angry right now.

birdie_1010

It sucks, but you can do this! I will be totally honest and say that the first year is by far the most difficult.  We had two kids diagnosed in a period of 9 months.  It was SO HARD.  We are now two years out from my older son's diagnosis and although every day is still a struggle to keep all the balls in the air, we do it and it is just becoming second nature for us. 

I'm not sure where you are located, but in my state there are other options available that are not as inclusive as a waiver, but can offer some support to families with children on the spectrum.  We can use our funds for PCA hours, respite, sensory equipment, etc.  

Big hugs, you will get through this.  

 

ETA: The best advice I got when we were at the beginning of our autism journey is, "you can only do what you can do." Do not think that you have to do everything for your child all at once.  This has become my mantra and I literally start every day by saying this to myself.  

ntyravgmom

They really shouldn't even mention the medicaid autism waiver, it's been years out since my eldest was diagnosed in 2005/6. ITA wtih birdie, look into other options. Check out www.nichcy.org for information on places in your area.

lite-bright

In CO, the wait list is seven years -- for a waiver that only covers treatment between the ages of three to six. So even if you got an autism dx at birth and were able to get on the waitlist then (impossible), your child would probably still age off the waiting list before getting any aid for treatment whatsoever. 

Also, our insurance specifically excludes any treatment whatsoever for autism. That makes me angrier -- that we always played by the rules and had insurance coverage, but once we actually needed it, they basically said, "screw you, we decided not to cover this and you can't make us. You're on your own."

We've pretty much just accepted that other than school services, we are on our own. My parents offered some financial help after DD1 got her dx that helped us get through the first year. 

It's truly appalling. People think that if you have a SN child, that all this help just appears for you. LOL. But treatment, and aid for developmental disabilities, is not considered a right. It's an "as funds are available" situation. Or so CO's state government explains it.  

ETA: We also get a small check from our county developmental disabilities board each year. It's not much, but it does help us stretch our own dollars farther. And now that we're into our second year post-dx, we were able to max out our FSA so that at least we're using pre-tax dollars to pay for therapies. 

Anlo

lite-bright:

In CO, the wait list is seven years -- for a waiver that only covers treatment between the ages of three to six. So even if you got an autism dx at birth and were able to get on the waitlist then (impossible), your child would probably still age off the waiting list before getting any aid for treatment whatsoever. 

Also, our insurance specifically excludes any treatment whatsoever for autism. That makes me angrier -- that we always played by the rules and had insurance coverage, but once we actually needed it, they basically said, "screw you, we decided not to cover this and you can't make us. You're on your own."

We've pretty much just accepted that other than school services, we are on our own. My parents offered some financial help after DD1 got her dx that helped us get through the first year. 

It's truly appalling. People think that if you have a SN child, that all this help just appears for you. LOL. But treatment, and aid for developmental disabilities, is not considered a right. It's an "as funds are available" situation. Or so CO's state government explains it.  

ETA: We also get a small check from our county developmental disabilities board each year. It's not much, but it does help us stretch our own dollars farther. And now that we're into our second year post-dx, we were able to max out our FSA so that at least we're using pre-tax dollars to pay for therapies. 

The bolded is us too. DH works for a small company, so we've spoken to the higher ups about the possibility of changing the policy, but won't know anything until December.

I'm angry at myself because we're over a year past DS's dx and I'm just now getting around to doing this. I didn't think he would qualify for the waiver because I misread the guidelines and thought that he would have to require inpatient care to be considered.  We have an appointment with a caseworker who will come to our house and determine eligibility, etc. so we're still very early in this, but at this point I'm wondering if it's worth it. I'll still do it for my own peace of mind that at least I tried, but still.

I'm not absolutely sure what the official name of the waiver is, but it's the one that does not depend upon our income, only DS's income (i.e. $0). We make too much money to qualify for income-based aid, insurance won't cover services, so basically we're screwed. We pay what we can, but that means OT and ST every other week. No ABA or anything else other than school.

Thanks for the resources and support. I'll check those out.

Anlo

-auntie-:

That sucks. Is this a Katie Becket Waiver, i.e. non-means tested Medicaid?

Every state does this a little different; I know people who have moved to qualify. I've known families whose child "aged out" before getting to the top of the list. I know one boy, 13, who died before his name got to the top. He qualified a year later.

This makes me want to throw up.