Medicaid Waiver 101

[Guest guest]

So let me see if I've summed up this week's discussion of Medicaid Waiver Programs, and you policymakers I've sent this to, please correct me if I'm wrong, but above all, share the name of the drugs you were taking when you made these rules, so that I might take some as well to better understand and make sense of them...

1. You wait up to 8 years for EARLY Intervention services your child needs.

2. Your child's name comes up and you fill out all that paperwork and the Case Management Agency and the Service Provider Agency you chose from a russian-roulette wheel of choices writes down all the "services" your child can receive, and you wait and wait for those services to start, but they never really do in full because there aren't enough providers or attendant care workers.

3. You realize that while your child is not receiving the benefits of what's written on the piece of paper, the Case Management Agency and Service Provider Agency is still receiving their money for not providing those services. You start applying for a job through that agency because that is the ultimate job. Do nothing, get paid.

4. They are not doing their job in finding and training attendant workers for you, and even if they do, the attendant providers can't transport. Which is another reason parents need attendant care - to take their child to therapy, outings, etc - while you work with your other children, or work, etc. So, to get around both those issues, you can choose "CDS" to do it yourself and through that, the attendant can transport. So, you choose to do all the hiring, firing, and finding and training, just so someone can transport your child - and you still don't get paid for your time in doing that - and the agency still gets paid while you do that. Granted, not as much, but still much. Again, I want that job.

5. You realize that having private insurance - which so many covet - actually does you more harm than good, because medicaid says to go through private insurance first, but then private insurance doesn't cover what you need. Therefore you can't get it from medicaid because they said to use private insurance. Private insurance says they won't cover it. So families drop their private insurance so medicaid can cover it. And this makes sense how? Half the population that needs insurance can't get it, but then those who have it are screwed by it?

5. So, they can't find you an attendant care provider. You as the parent need to work so that you can be self-sufficient and provide for the needs of your own child. But you can't because your child needs specialized care. Day Cares can't provide that specialized care. So you depend on attendant care so you can work. But you can't find attendant care. The logical thing would be to pay the parent for the hours the agency can't provide the attendant care - so that the parent is self-sufficient and can use that income to provide for what the child needs. Which aleviates the need to jump from black-hole to black-hole in trying to get that through 'the system'. But no, that wouldn't be proper. A parent can't be the provider. The more appropriate thing, is to provide the parent with no provider instead.

6. But oh, I guess in some cases, the parent CAN be the provider! Someone brilliantly came up with the magic number of 21 which makes it all better and proper for a parent to be the provider!!! Someone has a partial clue. However, - and why is there always a "however" - the parent can't be the guardian. Parent needs to be guardian because child has a disability and needs protection. If child didn't, child would be on their own and out of the house at 21 and parent could have a career or eat bons bons watching Oprah finally, or whatever. But that's not the situation. Child needs protection by guardianship, child needs attendant care provider. Either you provide the attendant care, or you protect them. Heavens no, lets not allow both. And - in some cases, a parent can have a child over 21 and be the attendant care provider, and in

the same house have a child under 21, and not be their attendant care provider. Or, and I love this "or" -- you can give up your child for adoption, adopt them, and have all these issues erased!!!

(This is getting into where I really need to know the names of those drugs they were on when they made these policies)

Have I missed anything?

If you have any other conundrum, please share it with me, I'd love to add it to this for my own sick pleasure to keep from going insane.

Sincerely,

M. GuppyMy autism journey isn't about waiting for the storm to pass, it's about learning to dance in the rain.... Texas Autism Advocacy: www.TexasAutismAdvocacy.org

"There are some aspects of a person's life that we have no right to compromise. We cannot negotiate the size of an institution. No one should live in one. We cannot debate who should get an inclusive education. Everyone should. We cannot determine who does and who does not get the right to make their own choices and forge their own futures. All must."