Expect Spin With Autism Mandates

This is to be expected as mandates across the states now start to take effect. “Creative” maneuvering by the insurance companies is going to delay, defer, or deny coverage for ABA as much as possible due to the effect on their bottom line. ABA costs money. A lot of money. Most families in states who have recently passes autism mandates already know this and are going broke providing ABA and other interventions to their children with autism.

This article is not surprising though. Insurance points at the schools and says, “This is a governmental, educational problem.” The schools point at insurance providers and say, “This a medical problem and the insurance companies are responsible.” Unfortunately, parents are left in the lurch.

Gamesmanship will be played full swing as the statistics of autism increase, mandates are put to the continued observance and execution test and providers try to manipulate their insured with lunatic requirements that realistically can’t be met – such as is the case in Michigan.

Having lived in Michigan, I can attest to the shortage of providers and the long waiting lists for services. I can’t imagine how families who qualify for the mandate will jump through the hoops that insurance providers are creating. It is sad as well as disconcerting, and I hope that some semblance of enforcement of plausible terms can be created.

Please click here to read the entire story...

“A state law requiring insurance companies and health plans to pay for treatments for children with autism goes into effect today, but autism advocates and parents say that while the new measure is a significant step, many families may get little, if any, help from the new statute anytime soon.

Michigan has far too few medical professionals who offer the specialized therapy autistic children require, they say, and some insurers appear to be setting conditions that could make autistic children and their families wait many months for help — if they get it at all.

In the meantime, families with autistic children either go without the treatment that can help their sons and daughters learn to function, or teeter on the brink of financial ruin…”

In Advocacy,

Mike

How Much Is Too Much When It Comes To Your Child’s Treatment?

I wanted to share something with you that I believe every loving, involved and advocating parent struggles with when it comes to the care and well being of his autistic child. I know that many of mine and my wife’s discussions revolve around this, and that it seems to be a recurring topic naturally in our household. My goal today is just to share a topic that I believe many families living with autism struggle with and to reassure you that you are not alone if you have experienced similar. I am eager to hear your experience.

What I want to discuss in a broad context is that of deciding the proper treatment and care for your child’s autism.

Instead of discussing the different kinds of treatment available today, and whether your family subscribes to researched-based, scientifically-based or perhaps other various styles and methods of treatment options currently available, I want to hone in on the specific, secondary effect that the pursuit of any treatment option has on the family dynamic.

I will start with these questions:

1) How often do you and your spouse discuss if the treatment method you are using is actually working for your child?
2) If you do have this discussion, has it ever gotten heated?
3) Have you made major life changes or decisions such as move your family to a different state, change jobs, move to a different school system, quit a career, get a second mortgage, max out credit cards, take out loans, borrow from friends and/or family, take on a second or third job in order to provide your child the BEST and MOST amount of treatment that you could possible provide?
4) Have you ever had to put the needs of your other family members or children second to the treatment needs of your autistic child?
5) Have the treatment needs of your autistic child created difficult logistic problems in your household when it comes to things like travel to and from therapy, babysitters, having to call in sick from work?

I have to be honest that my wife and I have struggled with just about every question above? Who wouldn’t when you love and want the best possible outcome in life for your autistic child, right? As the primary advocates and caregivers for our child didn’t we agree to a “whatever it takes” attitude in pursuit of that care?

My main question for today in lieu of an answer is: How much is too much?

When do you draw the line? When do you draw that line between your faith in a perfect order of things in life and the secular works you attempt in getting treatment for your child? At what expense do you pursue treatment options at the expense of your marriage, health, emotional well-being and the other members in your family? Does your family “struggle” with autism, or does autism just “live with your family?”

I am hoping to get some feedback on this from my audience. What are your thoughts on this and why?

In advocacy,

Mike

New CDC Statistics on Autism Spectrum Disorders

The recent publishing of the new statistics for ASD by the CDC are certainly not surprising. I don’t know about you, but I see autistic children EVERYWHERE. Of course, when you have a child in your home who lives with autism it doesn’t take long to recognize the signs in other children. Dropping down to 1 in 88, and 1 in 54 should give pause to everyone, regardless if you have a child with autism or not. The growth in diagnosis is going to have a profound impact on society as a whole. I am a firm believer that resources need to be created and maximized in order to more effectively and quickly diagnosis and treat those on the spectrum as early as humanly possible. The earlier the intervention starts in life the better that child’s chances are for a potential full recovery. Changing the diagnosis and “shrinking” the parameters to exclude those on the fringes of the spectrum is only going to cause a greater problem in society. The saying goes, “pay now or pay later.” The problem with not providing necessary interventions to this growing sect of our population screams, “pay now or pay much, much more later.” Our overburdened Medicaid system, and dare I say judicial system will receive an influx of those in the decades ahead from those children today who do not or cannot receive the help they need.

What you can do now is to educate yourself. Look at the facts and statistics. And if you know a family who is dealing with autism in the home, reach out and offer a helping hand in someway. Even just encouragement into the family living with autism makes a tremendous difference.

In advocacy,

Mike

Military Moves & Autism – Moving To a New School District

Well, you just came down on orders. In six months from now you’ll be reassigned to a new duty location across the country. You have done this before, but this time you know things will be different. The last time you PCS’d you didn’t have little Johnny. Because Johnny was diagnosed with Autism a year ago, you know that the change is going to be difficult for all. But now that you know that EFMP approved your new assignment and you know the post or base you are heading to, then now is the time to start preparing for one of the most stressful parts of a military move with an autistic dependent – the educational transition to the new school district.

My wife and I have relocated to new school districts five times in the past four years. These moves have been both in-state and out-of-state moves and three of them have been with the military. For anyone who has relocated with an autistic child it can get pretty stressful. There are many things to consider in the move, and the bigger the jump you have in preparation the easier the transition will be (if you can even use the word “easy” and “PCS” in the same sentence, lol). From the usual concerns that all military families have during PCS time such as whether to live on or off post, rent or buy a home, what is the local area like, are the schools good, is the crime low and are there recreational things to do for the family within close proximity to base, a family with an autistic child has many more things to consider. Here are the top considerations we have when it is time to move:

How many local providers are available and how close are they to where we intend to live? In our case, we want to know how many providers of ABA there are and how far are we going to have to travel round trip from provider to home.

This can be done with an easy Google search or by looking at the recommendations from many mainstream websites of national Autism organizations such as Autism Speaks, Autism Society and many others. Also, a call to the local EFMP office of your new duty assignment can be helpful in directing you toward resources or providing information on providers of the specific treatments or therapies your kid needs. As a parent of an auttie, you can expect to do some driving. Most private providers don’t provide busing like your school district does. In fact, one of the biggest contributing factors for Moms staying at home when they have an autistic child is because of the transportation needs of their child. You’ll want to spend the least amount of time as possible in the car, so try to live as close to the center as possible. Plus, mileage deductions for the medical reasons only go so far on your tax return and gas costs a lot of money. It’s not a fair offset. Of course you’ll have to weigh the proximity of living near your provider with the point below – the school district that you feel will be the most conducive to their educations.

Do your due diligence on those private providers that appear to be the best fit. We want to know things like the credentials of staff, how long they have been in business, services they provide, do they do in-home care as well, do they take Tricare as an insurance provider, how long have they been in business in the area and do we get a “gut feeling” from them?

The biggest things to consider are above, but most importantly you want qualified professionals providing service to your child. In our case, we want certified behaviorists providing the interventions of our kids’ ABA. BCBA is required of course, and it is a bonus if they have a PhD, teaching certificate, ASD certification and other pedigrees to add value to their offering. Since we will have a relationship with our provider we want to make sure that the director or owner is someone we naturally like. Do we like how they express themselves over the phone and in person, the information they have provided to us? We aren’t as fixed on the accommodations on-site at their place of business (such as expensive facades, hi-tech computers, etc), but more importantly is my son going to get great programming here from professionals who really care about progress.

What is the “scoop” on the school districts in the area you intend to live? We want to learn as much as we can about the service offering typically provided by those school districts and how “friendly” they are to autism.

You are only going to learn so much with online research. For every blog post, discussion thread or article on a website that you find about the available school districts that sheds a negative light on them, with enough digging you will find positive as well. The thing with autism is that it is a ‘spectrum’ disorder. Because of this the treatments vary from one autistic child to another. As the saying goes, “If you’ve met one autistic person, you’ve met…ONE autistic person!” They are not all alike and they all don’t respond to the same treatments. What provides the greatest result from my kids may not provide the greatest result for yours. Your child may require something entirely different to achieve measurable progress. So, don’t base your whole opinion on what you read on a blog post! Be careful who’s anonymous advice you take from someone your don’t know or you’ve never met – they just may be a lunatic (kind of like me and this blog, lol).

Calling the school itself is not going to yield much good information either. Here’s why: if there were particular schools out there that provided the utopia program offering for autism then every family affect would instantly move to that school district and quickly exhaust the limited resources available. When you call to a school’s special education (SPED) department and speak to anyone with credentials there they will usually tell you that you would first have to enroll your child, examine your IEP (or create one) and then they could discuss program offerings. That is the kind way of telling you, the discerning, investigating parent, that we’re not telling you one way or another (for the reason I stated above). Be careful to heed what I shared above. Don’t get duped just because 50 people said they were treated horribly by a district. If 50 people stand up in a crowded room and say something stupid, it doesn’t give it credibility just because 50 people said so. Those 50 people may not understand your child’s rate to a FAPE through IDEA or have a clue how to advocate for proper services with that particular district. EFMP at the new post may be helpful to give you some insight if you are able to articulate what your current IEP stipulates or you know the service needs of your child.

Your best bet as you are calling around to the different private providers as suggested earlier to determine which one fits your child’s needs best is to ask them which districts in the area are friendly in providing the type of services that they provide and your child needs. You see, with your insurance benefits through Tricare, (ECHO and Autism DEMO) up to $3000 per month of services will be provided by the private provider you choose. These private providers are usually your ally in giving you the straight scoop on local school because if they are a good one, they will want your child to attend in a district that will openly work with and file share with them to give your child the best continuity in care that is possible. The left hand (private provider) wants to know what the right hand (public school) is providing. Good providers will be able to provide guidance and some even contract with local schools and can indirectly help the transition when it is time to enroll because of the working relationships they have with the SPED at a certain school district. The insurance benefits your child receives will be provided in addition to the services he qualifies for with his ISFP or IEP. When schools are more likely to collaborate with your private service provider to provide the necessary and appropriate programming he needs, the better shape you are going to be in.

School districts are funny entities when it comes to special education and autism. I think the dramatic increase in autism diagnoses over the past 5 years has caused some shock to school systems that have and still continue to have ill-equipped untrained teachers and staff. Most schools still don’t readily have access to BCBAs nor have them on staff. Especially the more rural the setting the higher the likelihood that you may have unqualified teachers to provide the necessary services your child needs. Because EFMP has to approve your assignment, chances are you are going to be within a few hours of proper services based on your kid’s needs and there is going to be a sizable population with larger school districts. The rule of thumb is to guide your assignment to a location that is near a major metropolitan area. With an autistic EFMP dependent the chances are slim that you will be assigned to the middle of nowhere (as we have all seen or heard tales of the posts and bases that literally are in the middle of nowhere.) If you are fortunate to be near a population center, which I hope the assignment branch and EFMP has done for you, you will have more opportunities for proper care.

In addition to ours advice to above is what the Department of Defense offers on their new website for families with autistic dependent. They have some pretty comprehensive advice. You can click here to access the link.

Hopefully, these are a few things you will think about as you prepare for your next relocation!

In Advocacy,

Mike