I haven't even read any blogs lately, let alone write anything for my own. Not only was the Buddy Walk this past Saturday, I also had a lot to get done for work. I am happy to be back in blog-land tonight!
We recently found out that Levi was approved for a Michelle P. Waiver, which is one big, stinkin' deal! The Michelle P. Waiver is the result of a lawsuit over the lack of community based services available to people with mental challenges. The idea is to have an alternative to institutional care & allow individuals to live in their homes with services and supports. Occupational therapy, physical therapy, and respite care are a few of the types of services covered. There are two types of waivers in KY (Michelle P. and Community Based) and a parent can chose either one. I have been told that the Community Based Waiver is easier to get but that a Michelle P. Waiver has a bigger budget and would still benefit the child as he grows into adulthood (although you do have to reapply ever year).
While we do receive therapies from the First Steps program through the state, we are currently getting only 45 minutes a week of physical therapy & half as much in occupational and speech therapy. I am extremely interested in horse therapy & more time doing the other types of therapy that Levi already gets.
But one of the biggest reasons to get this waiver is that it automatically qualifies Levi for a Medicaid card. Our insurance costs quite a bit per month, plus we pay 20% of most procedures (like his $800 hearing test) and hospital stays. We have paid thousands upon thousands of dollars for Levi's medical expenses this year, and I know other families that have had a much more expensive year than we did. Keli & I were joking about how they say kids with Down syndrome have "designer genes." I told her that must why they cost us so much!!
I have made many, many phone calls and done a lot of research before starting this process. I was told by one office not to try to start this process until he was nine or ten years old. I was also told that it would cost $365. Levi was approved at 15 months of age and it didn't cost a penny. The inconsistency of information is irritating, but shouldn't deter a person from trying to get the support they'd like to have.
I have asked questions of many parents, therapists, case managers, and others before starting this process and still took a few wrong steps. I even changed my mind about what type of waiver I wanted to apply for. Along the way everyone I've spoken with has been very helpful and kind...Well, except the lady at the Family Services office several weeks ago that ripped a huge fart in the hallway while she walked me back to the entrance...Actually, I take that back. She was helpful and kind...just flatulent.
Here are a few things I either learned the hard way or had to get inside information to...
First get your special needs child listed as disabled with your local social security office. Click here to enter your zip code to find out which office is closest to you.
We knew we wouldn't qualify for SSI benefits (because of our income and because we both work), but that isn't why I was there. I had a case manager tell me that the people that are getting waivers now are the ones who have their children listed as disabled with social security. A person who may qualify for help would need to bring financial information to the interview and could actually apply online. My favorite question during the interview (while Levi was sitting on my lap) was, "Has he ever committed a felony?" I told the woman that he was usually a pretty good boy.
At the end of the interview, she told me that we would need to come back in when he was 18 to apply for disability benefits...or to come in again if we decided to put him in an institutional setting. Really? I am sure she had to say that & it was probably in her script somewhere, but come on! This is my baby you are talking about! Okay, I'm digressing...
Get an assessment of your child.
A person getting a Michelle P. waiver would have a local mental health agency come to evaluate the child. Local home health agencies do the evaluations for Community Based Waivers.
Michelle P. is what I decided to go with, even though I've heard it is harder to get. The reason it is harder to get it that there is no assessment specific for children, so when the person doing the assessment asks a parent, "Does he dress himself?" A simple "No" wouldn't set a special needs baby apart from any other baby. A parent needs to say things like, "No, because he doesn't have a strong grip. He cannot stand. He cannot balance. He doesn't have the strength to pull something over his head..." This is key. Otherwise the assessment of my 16 month old might look exactly the same as any other 16 month old. It is imperative to set the child apart and make it clear on the paperwork that he or she is delayed.
Some tips on answering the assessment questions:
There is a "Safety Issues" section. This is the area to really show how your child is different. If the paperwork doesn't show that your child has safety issues, he is a lot less likely to be approved.
Since Levi has the tendency to throw his head back at times and hit his head on the floor, I said his reflexes are not integrated which causes him to bang his head.
His tongue thrust can cause eating & swallowing problems. The ENT told us to not let him drink from a straw and to only give him thick liquids. I talked about all of these things with the woman who did our assessment.
A few other specific things I added: he doesn't have "protective extension/protective responses" (which is why he can't catch himself from falling over). He also doesn't have "righting directions" (as in right vs. wrong) to help him correct himself when he starts leaning one direction or another. I included his breathing issues as well.
After the assessment, you wait for a phone call to find out if you were approved or not. Then you have 60 days to get a case manager and have him or her get the rest of the paperwork finished.
The good news is that Levi was approved. The bad news is that if I hadn't started calling and digging for information, we'd have never known!! Apparently, we were approved on August 31st and about a month had passed before I knew anything!! I called and called and finally left some impolite messages saying that I expected my call to be returned. The woman who was supposed to let us know had the wrong phone number. When I finally got a hold of her, I was told a case manager would contact me in two weeks (which leaves only two weeks for the case manager to come out to our house and get the paperwork completed). I am not sure how long it takes someone to do that if it takes them 2 weeks to make a phone call. Ugghh...I just hope we get everything done in time!
Enough of that. Here are a FEW of my favorite pictures from the Buddy Walk. I will post more before the end of the week.
Here is a collage of some of the special children we were there to celebrate. DSACKs slogan is "beautiful, capable, loved." So true.
My favorite picture. It was taken shortly after Levi decided to wake up and be a part of his own walk!
Our adorable nephew & his mommy
Family pic after the walk
Levi & his BFF, Miles
The teamAn event like the Buddy Walk wouldn't mean near as much without these lovely people sharing it with us and showing their love and support for our special little boy.
Thanks for reading. Thanks for caring. Thanks for being a part of our lives.