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So, needless to say, we were super excited to see October 15th coming up on the calendar. For weeks before the date, I started digging for information. There really was none tobe had. My last call for information was made on Friday, 10/13/12, when there was still no information. I was told to talk to our primary care physician for everything from how the referral processed worked to what providers would be available. The ridiculousness of being referred to someone else to get information on decisions that this company was making infuriated me. The conversation ended in me telling the supervisor that I had asked to speak with that I was gravely concerned and disappointed in the lack of information and the way that the insurance company had handled these changes thus far.
Monday, 10/15/12 was like Christmas morning for me. I called customer service around 9 a.m. After getting very little information from the person that initially answered my call, she transferred me to someone in behavioral health, who actually seemed to know what he was talking about. I was told that there was no need to get a referral from the PCP, that all that needed to happen is that the person/center who was going to be providing the therapy needed to contact the insurance company with a copy of Noah’s most recent evaluation and diagnosis. That seemed easy enough. Giddy with excitement, I called the Program Director at Noah’s center and gave her the information. She called us back later in the afternoon to inform us that YES, in fact, Noah was approved for the ABA therapy, however, since the center does not have a contract with the insurance company yet that they were unable to enter the approval into the system. And herein lies the problem. There are no in-network ABA providers. Apparently, there is no agreement between the providers and the insurance company as to what an appropriate amount is to pay them and so we’re stuck. You’re stuck. Everyone is stuck. It sucks. Not so much like Christmas morning anymore.
You see, we’re one of the lucky ones. We happen to have a current evaluation from one of the four Approved Autism Evaluation Centers (AAECs) in the state. Many people are currently trying to get one of these evaluations for their child and are not only running into 18+ month waiting lists but are also told that if they make an appointment that it may be self pay (to the tune of $1000) because there are no contracts set up with the insurance companies. Not to mention that (did I say four) AAECs are primarily located in Detroit, with only one center in Grand Rapids. That makes it an incredibly difficult to get treatment or an evaluation if you live in Marquette or Mackinaw City or Gladwin.
With that being said, no one cares about our children like we do. So, we’re going to have to do the work to make the changes. Just like all of the parental manpower that went into getting the law created, the same amount of work is ahead of us in getting the treatment network created and MAKING this into a working system. If you’re interested in making a change, consider doing some of the following:
Please let us know how things are going and feel free to share information on this page or here. We need to band together to finish the job and make this happen. Best of luck to all of you!
After responding to an inquiry from the Autism Alliance of Michigan last week, Erin was contacted by Robin Erb of the Detroit Free Press regarding an article she was writing about the recent autism insurance reform in the state of Michigan. After a half hour phone interview Ms. Erb asked if she could send out a photographer to take some photos of us and Noah. We were more than happy to oblige. We anxiously awaited the arrival of the Sunday newspaper and were thrilled today when we found that it was the cover article for the health section. I will try to get a scan of the article as the cover photo is full-page and quite impressive, if I do say so myself. Click here to see the article on the Detroit Free Press website!
So much has happened in the past two months!! We’ve been so busy that I’ve neglected the blog. I guess that I can just say that I’ve been on sabbatical. In any case, here’s an update of what we’ve been up to…
On March 29th, after several trips to Lansing and sitting through many hearings and legislative sessions, the Michigan legislature passed the autism insurance reform bills! As much as this is a load off of us and the other families in Michigan who are in our position, I thought that I would more excited. I could barely believe it as I sat in the Senate gallery and watched as our dream became a reality!
Autism Awareness month (April) was a great one for us! We were given tickets by a friend to take Noah to see the Pistons play at the Palace of Auburn Hills. Our seats were AWESOME! Noah loved the snacks and the halftime show, but the cheerleaders were his favorite!
Larry and I were lucky enough to receive complimentary tickets to the First Annual Autism Alliance of Michigan Gala! The event was hosted by Lt. Governor Brian Calley and Emceed by Frank Beckman, of WJR. It was fun to get all dressed up and celebrate our victories!
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A post that I saw today on Facebook regarding misappropriation of funds by Autism Speaks intrigued me. It’s an accusation that I’ve seen more than once in the autism community. Some are so staunchly against the organization that they have set up online petitions to boycott it. My experience with Autism Speaks has been very different so I felt that I had to investigate.
When I searched misappropriation of funds and Autism speaks on www.google.com, I found a handful of articles. Several of them were online petitions not describing the reason that they were posted. I found an article regarding misappropriation of funds by a chapter of The Autism Society. I did find that people were unhappy with the amount of money that comes back to local families and organizations for direct services. I later found an article explaining this. The fact is that Autism Speaks does not claim to be raising funds for direct services. According to the Autism Speaks website, their mission is:
“At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.
We are dedicated to funding global biomedical research into the causes, prevention, treatments, and cure for autism; to raising public awareness about autism and its effects on individuals, families, and society; and to bringing hope to all who deal with the hardships of this disorder. We are committed to raising the funds necessary to support these goals.
Autism Speaks aims to bring the autism community together as one strong voice to urge the government and private sector to listen to our concerns and take action to address this urgent global health crisis. It is our firm belief that, working together, we will find the missing pieces of the puzzle.
Autism Speaks. It’s time to listen.”
Autism Speaks never claims to provide any type of services to any one individual, family or organization. In fact, they clearly state that they fund research, raise public awareness and attempt to bring the autism community together. The evidence of these efforts are plentiful. They have grants and fellowships available on their website, administer clinical programs such as a genetic resource exchange and clinical trials. They provide family services such as the 100 Day Kit, which guides families through what they should do during the first 100 days after diagnosis. Additionally, as evidenced by the passage of autism insurance reform in Michigan last week, as well as 29 other states, provide advocacy services.
I have seen their advocacy first hand in my efforts to assist in getting the autism insurance reform passed in Michigan. During our attempt in 2010 to get this legislation passed, Autism Speaks sent representatives to speak with legislators and provide information to them, such as actuarial studies from states that already had coverage. In the most recent (and successful) effort, Autism Speaks sent representatives to try to bring groups from across the state together in one effort. Additionally, Autism Speaks has done more than one can imagine to raise autism awareness, with their “Light It Up Blue” campaign and their partnership with Toys R’ Us in raising funds and awareness through their stores, as well assisting with the creation of a “special needs” toy catalog.
While many may not agree with the mission of Autism Speaks, I think that it’s a far reach to say that by meeting it that they are misappropriating funds. Everyone is entitled to their opinion, but I do ask that prior to forming an opinion, that you become educated about what it is that they intend to do and whether or not those goals are met.
You might remember last year in April, which is autism awareness month, some local business supported Noah and autism awareness by selling blue puzzle pieces for $1. Here’s how you can help:
If one of our community partners is not near you, you can make a donation here on Noah-ARC.com and we will post your puzzle piece for you at the bottom of the page.
It was a busy week. It never seems that we get more than a couple of days notice as to when there will be a hearing or committee meeting for SB 414, 415 and 981, the bills are known as the autism cost reduction act. This week was no difference, we found out on Tuesday that there was a hearing scheduled for Thursday which also happened to be Erin’s birthday. The autism cost reduction act will require that private insurance pay for therapy for people with autism, this includes Applied Behavior Analysis (ABA). However before the bills were brought up they voted to accept amendments to all three bills.
The amendments have yet to be published so we are not totally sure of the impact of the changes. We do know of two changes the first being that children must be re-tested every three years to verify the child still has there diagnosis. This is not a problem Noah is re-evaluated every few months to make a treatment plan. The other major change is a change to the yearly monetary cap for services. The bills as they passed the senate had a $50,000 per year cap for ABA therapy. To us this meant that insurance would pay $50,000 a year out of the $60,000 we currently pay out-of-pocket for Noah’s therapy. The change is that the yearly cap is dependant on the child’s age, up to age 7 the cap remains $50,000 per year, ages 8 to 13 the cap is lowered to $40,000 a year and from ages 14 to 18 the cap is lowered again to $30,000 a year. The reason for reducing the caps is that normally as children with autism get early intervention and as they get older less therapy is needed. The change that is more upsetting to people is that it cuts off people at 18. The bills as it passed the senate were better for families that are affected by autism, however the bills as they stand are better than nothing.
As I said before Thursday was Erin’s birthday, I won’t say how old she is. It wasn’t the best birthday for Erin as she was not feeling well but she made it through and she had an awesome cake!