Great Article About the Challenges Military Families Face Who Live With Autism

This article is a great summary of some of the biggest problems military families who live with autism face. Moving from post to post as frequently as we do, especially moving away from those blessed situations where your child is getting every service they need from top-notch providers, is so detrimental to that child’s development. Continuity of care is broken. Another state, school system and fight over a new IEP. Not to mention the stress that change causes to the family dynamic as a whole in this process with moving to a new, unknown area, new boss, new job, new chain of command.

Very, very stressful in a system that needs help desperately for the tens of thousands of autistic children in the military.

This article from the Huffington Post nails it. I have included the first couple paragraphs, but would encourage you to link over and read the rest of this brief, informative article.

Also, I would like to add that it is great to see an autism warrior advocate like Karen Driscoll working for Autism Speaks now to advocate with Autism Speaks for military families everywhere. I can’t think of anyone better for that position and who can better leverage the resources of Autism Speaks for the benefit of the military community.

In advocacy,

Mike

“Military Parents With Special Needs Kids: Who Makes The Real Sacrifice?”

“This is the best place for you to live. There is an amazing center here that works with autistic kids.”

Encouraging words. No one could have known that these words were the last thing I wanted to hear.

It was 2004 and I was living in Sacramento. My 3-year-old son had just been diagnosed with autism. The MIND Institute at the University of California, Davis was hailed as one of the world’s premiere autism research institutes. Everyone I met conveyed the same sentiment — the MIND Institute could single-handedly heal my son.

Something else was going on in 2004; a war. We had not expected to move that year but the needs of the military changed those plans. Just as my son was diagnosed, we received orders to a military base located in an isolated and economically depressed area of Southeast California. My husband would deploy to Iraq a few months after our move. The MIND Institute would do nothing for us…. click here to get the rest of the article

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

The Written Opinion: Great Tool for IEPs

The Written Opinion: Great Tool For IEPs

One thing you always have to realize as your child’s most important advocate is that the fight never ends! Let me say that again slowly, so it really sinks in for you. When you are an advocate for autism…the…fight…never…ends. Even when the pathway in autism looks smooth at any given point to travel on, you may get surprised just around the bend. We have discovered this after moving into a great situation in Florida. At my son’s IEP that occurred last week, it wasn’t necessarily going exactly in the direction that it should. Now, I am deployed overseas right now so I obviously wasn’t able to attend, but she is a pro and if there is any one person I would ever feel confident that could go into an IEP meeting alone it would be my wife. She is an advocate on steroids, knows the law better than most of the spedlaw attorneys we have crossed paths with, and certainly knows more than anyone on any IEP team we have ever convened with! For everyone else, my advice is to take an advocate or at least a friend with you. More eyes and ears are always helpful since the school district is always going to try to jam your child into the minimum that the law requires them to provide. This new district, although the service offering will eventually be great once we find common ground, appears to not follow IDEA in it’s procedural policies in regard to conducting proper IEPs. And she had to deal with a room full of lackeys (the people who have no power or authority to make decisions beyond the boilerplate service offering they try to stuff down your through in 60 minutes or less). So, not much was completed.

So now, Lisa and I are collaborating on our first play back toward the District to attempt to quickly influence the team’s decisions in our favor to craft the IEP that my son needs. Cause we all know, if it ain’t in the IEP, the program to be implemented wasn’t agreed upon…legally. Lisa wrote the body, I provided the editorial filler and she will put the finishing touch on a tool that we learned from the Wrightslaw series of book, website and blog call the “The Written Opinion”. Essentially, it is a letter that does one or more of the following, according to Wrightslaw:

– What happened at the meeting.
– What did not happen.
– What the team discussed or failed to discuss.
– Team decisions to which you did not agree.
– Relevant facts the IEP does not include.
– Correction of wrong facts in the IEP.

As Wrightslaw says, the letter doesn’t have to be a legal masterpiece, it is just a summary of how you experienced the meeting and what you found right, wrong or indifferent about the creation of your child’s IEP. When you create a good one and send it shortly after the conclusion of an IEP that you don’t agree with, it triggers a response from the district. At least, it better because if they don’t respond it will indicate acceptance of your opinion which holds strongly if you have to head toward a due process hearing. Most times it will get the attention, like in our case, of the administrators above the lackeys so we can start talking with the people who are capable of making decisions on behalf of the district (and their pocketbook). Learn more about how to use the Written Opinion here!

In Advocacy,

Mike

Moving Around the Country to Find The Best Services

I am a fan of, and keep up with, the work that Autism Speaks does in research, legislation and advocacy for Autism. I also subscribe to their newsletter. This recent one struck me as I know of many couples who have relocated in order to find better services for their child. We are one of them. What is interesting though, is some of the states listed as the “best” are some that I have heard are the worst. Also, listed in some of the poorest is the state of Florida. I find this ironic as I just moved my family across country to specifically take advantage of the better services that Florida provides! So it is with treatment and services in general for this strange and unique disorders. What therapy works for one autistic child, may not work for the next. What programs a school may have available in-district for some may be perfect for that child, but absolutely inapplicable for the next! So it is with this disorder. Beauty (of programs & services) must be in the eye of the beholder! But I agree with the overall argument in the study, that generally, there is a large gap in need versus available services of all types across the country for the autistic population.

What is interesting from the military aspect of treatment is that military personnel generally do not have the good fortune of being assigned to major metropolitan areas where the likelihood of better access to services exists. Generally speaking, military personnel HAVE to drive in excess of an hour to get care, have to wait in LONG lines and cut through hefty red tape to get access to respite (if even at all in most cases), and can expect a fight in most district with their IEP due to their families transient nature.

Check it out for yourself below: