what do you want him to know?

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So those of you who have been around here for a while might remember that around this time last year, I wrote THIS,which led to an invitation to THIS which is how I ended up going HERE which I then wrote about HERE, HERE, HERE, HERE, HERE, HERE and then finally HERE.

In the last post above, I wrote the following:

Michael Strautmanis took the stage. According to the agenda, Mike is the Deputy Assistant to the President and Counselor for Strategic Engagement to the Senior Advisor Valerie Jarrett. For his sake, I really hope there’s a shorter version of that that he can use at cocktail parties. For my sake, I hope it’s OK to call him Mike.

Mike has been with the President since before he was the President. I am told that he was the one to whom (then brand-new) President Obama referred HERE.

I found it impossible not to like Mike. He is one of us. He is the parent of a child with autism. He gets the joke. He also understands why we’re not laughing.

I wrote about Mike’s words to us that day. How he urged us to work to find ways to come together as a community – to work through our differences. I wrote about him telling us that we cannot stand divided. That we cannot fight amongst ourselves. That we must come together and stick together. That we can argue behind closed doors, but that when we open those doors we MUST be holding hands. That we need to seek partners. That we can only do that TOGETHER.

And then I wrote the following:

I introduced myself to Mike before I left. I thanked him for his leadership and for all that he has done for our kids. I told him I was a mom. No longer did I say just a mom. I’d long since banished the just. I stood up straight and said simply, “I am a mom.”

He pulled me into a warm, knowing hug.

And somehow, standing in the EEOB, right in front of the very presidential stage, hugging an advisor to the President of the United States seemed like the most natural thing in the world.

We are parents of children with autism. That connection transcended the fact that we’d never met. It transcended the bizarre setting in which we stood.

We are parents of children with autism.

God willing, that will transcend our differences as a community. Because we’ve got work to do.

Together.

Mike and I connected that day. We have e-mailed many, many times since. We’ve spoken on the phone at length. Mike has indulged me as I’ve rattled on (and on) about what I believe that this community so desperately needs. He’s allowed me the space to tell him what I think his boss’s administration can do to help us.

And he’s listened.

He’s listened to me tell him that we are failing our military families. That it’s unconscionable that we are forcing the people who fight to protect us to also fight for the care that their children need.

He’s listened to me tell him that we need support from the top down – that we need his boss, our President, to LEAD – to tell people from the lofty height of his office why it is so important to invest in our community. To not follow the tide, but to use his power to help us SHIFT the tide – to insist on what is right and just and logical whether or not it may be popular. To talk at every turn about why we as a society must value – truly, deeply and systemically value – the potential of people with autism and to convince the non-believers why it is so richly worth the cost – from both humanitarian and fiscal perspectives – to do everything in our power to unlock it.

He’s listened to me talk about the dramatically uneven levels of support around the country – from state to state, zip code to zip code and school to school. He’s listened to me talk about how much a child’s services hinge on their parent’s ability to advocate effectively for them and how – in this, the greatest country on earth – that is so desperately wrong.

He’s heard me talk about the need for ABLE accounts and a federal autism insurance mandate. Yeah, I know – mandate. It’s a dirty word. Call it whatever you want, but there’s got to be some kind of uniformity in order to protect the rights of autistic individuals to receive care no matter where they live.

He’s heard me talk about the desperate need to remove the barriers to creating feasible, comfortable, safe housing for our children as they run headlong into adulthood. He’s heard me talk about creating and supporting employment opportunities for autistic adults, harnessing their unlimited ability to contribute to our society.

And he’s listened.

MIke has invited me back to the White House.

There’s no big event this time.

Just me and Mike.

Sitting down to talk.

So you know how this goes, right?

When I go to the White House – when I go anywhere to speak on behalf of our families – I don’t go alone.

You’re coming with me.

All of you.

We have half an hour – thirty minutes – on Thursday morning to tell Mike what matters.

We have his ear.

He has the ear of the President.

What do you want them to know?

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88 thoughts on “what do you want him to know?

  1. There could be no finer a representative than you. You will say everything there is to say. I am so proud of you.

    Love you,
    Mom

  2. Two Things:
    Stop damaging future generations (we know how this is happening)
    Do right by the ones that have already been damaged.
    It is that simple – what every parent in the world is asking for.

  3. First of all – holy cow. So proud of you.

    Secondly – Thank him, for all of us. For taking the time for each of our beautiful babies.

    Lastly – remind him that it’s a spectrum. Give him the swimming pool metaphor, and tell him that every part of the pool (shallow, middle, deep) has very specific needs. And that they are ALL important. Our kids in the shallow and middle are more likely to be bullied and commit suicide. Our kids in the middle and deep are more likely to need lifelong support. But that all of them – every one – needs support, as do their families.

  4. Our children need help. We have states that are decreasing ID waivers front left and center. This trickles down to school budgets.

    Where I’m told my child isn’t autistic ENOUGH to get an IEP and services he needs.

    Or at the very least, give parents of autistic children xx money a year to help for services. I have one who needs mire speech than the school will give, and another who can’t go to the dentist because he has to ne sedated which involves medical, dental, and my pocketbook.

    Or make it illegal for companies to fire patents because they need to take time off to help their autistic children. God, I wish we could do that.

  5. Jess,
    You are right we will be there with you cheering, laughing and most probably in my case crying like a baby. You go on girl, and keep giving Mike those hugs as I know he is a great hugger!
    Semper Fi, Bernadette Jarosz
    (Marine wife and mother of Gabby who is affected by Autism)

  6. I will echo Molly…tell him thank you on behalf of my two boys, their brother, their friends and all of us parents.

    My wish list is long, but it starts with there needs to be top down incentives to companies for helping our children as they become adults. Workforce training, tax incentives for companies, etc.

    And then more hospitals and clinics should be encouraged to work together based on the model of The Autism Consortium in the Boston area. Information, research should be shared. Autism has an affect on the whole family. We should all be working together to help each other.

    And my big one: Coverage for autism therapies shouldn’t depend on where you live, what your parents do for a living, or what school district you live in. Like health care, every child needs insurance coverage for speech, OT, ABA, etc.

    (now stepping off soapbox)
    There’s no better person than you to have this sit down frank discussion of what our families need. Thank YOU for doing this for all of us.

  7. First absolutely thank him! Second there is so much money spent on doing research On stuff like does smoking during pregnancy cause autism? Why? Even without getting into debate of causes and if should be researched some of these studies just seem silly. Smoking during pregnancy is bad move on. Yes bullying causes kids to have longstanding issues. Can they put the money in providing the supports so that the kids don’t get bullied to begin with. Wow so many things need attention related to supports and assistance from birth through death! So many adults have no where to go for help. I can’t even find an autism specialist that sees adults. I can’t imagine trying to find appropriate place to live if I needed to. I am preparing for my son to live here as long as we can but what about when I die! I can’t imagine how others feel who have kids somewhere else in the pool (love that analogy). Nobody talks about the adults – I guess that is because Jenny mcCarthy has never seen an autistic adult (eye roll). Sorry for rant I think you know what I am saying. Services needed through lifespan stop spending money trying to find ways to blame the mom (smoking, antidepressant use, obesity, etc…)

  8. I want him to know that we parents are dedicated to the autism community as a whole, not just our own families, and there are parts of the country (like central Pennsylvania) where Applied Behavior Analysis, the most proven effective method in helping children with autism succeed, isn’t even available, and that families here are struggling so much financially that, even if these supports could be found, our income couldn’t support it. I’d want him to know that we believe that there’s more than meets the eye when it comes to autism. Our children each offer something unique to our society; they are our future. I’d want him to know how much sleep we lose at night, worrying that someday, when we die, we’re terrified that our children will be alone and unsupported – that there is not true safety net for adults with autism. And I’d want hintonknow how thankful we are that he’s offering his time to you today. It’s an incredible feeling, knowing that you’ll be heard.

    Good luck today, sweets!
    xo
    Kate

    • Exactly what Kate said! Even in Chicago our resources are limited. We spend half of our week driving. Now that we found something, our insurance won’t cover ABA. We can’t afford the 3 appointments a week T needs. And professionals in the fields need support… We need them, we need more of them!

      This leads me to insurance. Even working for a major corporation there are loop holes in federal and state insurance laws that are such said major corporation does not have to cover ADHD or Autism services. We pay out the nose for insurance and services recieved are the bare minimum. When a corporation crosses state lines, laws get fuzzy. If a corporation self funds their insurance, the laws don’t apply to them. Now we are left with bills or having to stop therapy even though it is working.

      Also, all my son wants is to be included. He wants to go to kindergarten next year at his brothers school, which he will, and I want to know he is being treated well. Up with neuro diversity!

      I’m so proud of you! You are a great voice for all of us!

      Hugs!
      Nicole

  9. wow, congrats jess!

    rather than pass along any issues i ran into during my life…i’d rather you go into the difficulties that military families face…you’ve been great about bringing attention to that…would love to see some positive changes there.

    i don’t even know what to articulate what would have made a difference in my life…but military families, we know what they need, that is a serious situation that needs attention.

  10. That Early Intervention works and cannot be turned into some political bargaining chip, thrown to the side in favor of someone else’s pet project. It needs funding, and lots of it so that our kids can be identified from an early age and have access to good care as soon as it happens. In the long run, it is a cost savings to diagnose and treat early and worth every penny on behalf of our kids.

    Best of luck and love to you. We all need you in that room.

  11. What an amazing opportunity. I would tell him first “Thank you” for the autism awareness. second, that 30 minutes could never be enough time to say it all but I know you’ll try and you’ll do an amazing job. So here is my 2 cents. I am at a different point in our journey than you are. I have said that before. My son is 15 and a lot of kids we know are 18 and 20. Getting services through school is SO important because it lays the foundation for them. It is such a vulnerable time in so many ways, friends, learning, growing. The big issue in Michigan right now is transition and it is SO important. Not just housing. Jobs, LIVING and LIFE. A whole entire life in front of our kids. What kind of jobs are there? Housing? recreation? How will they become a happy, fulfilled, independent (or as much as possible) person? Those are the huge looming questions we are talking about now and for the next many years. It’s scary when you don’t know the answers.

  12. that the ability to access and afford good therapies by knowledgeable, experienced professionals should not be the privilege of the elite – that the difference between a life of independence and a life of dependency comes down to being taught to manage effectively, and if a family can’t access the tools, they can’t effectively teach this… That the American Dream shouldn’t be withheld from our kids based on their diagnoses. That without those whom the world sees as different. weird and scary, we’d have no innovators…

    • yeah, i agree with this completely…i was lucky enough to find a very good, qualified therapist, and it made all the difference for me. i had what was considered to be fairly decent insurance…and it still covered less than half a year of therapy. i had to self-pay, for my part…the doctor was nice enough to lower her fee…even then i couldn’t afford it. i had to work out an installment plan, even after the reduced fee. it was embarrassing,

      not sure if help should be available to clients, or if financial incentives could be given to therapists who help out low income clients…an area that needs attention.

  13. The development of LIFELONG strategies for success. Years of therapy from EI to age 22 too often result in our loved ones sitting on their parents couch watching TV and playing video games full-time.

  14. How deeply dissappointing it is that health insurance for federal employees took a step backward this year and specifically EXCLUDED aba coverage. In many ways federal employee health benefits provide a model for private companies, and the federal government could at least be leading the way here.

  15. AMAZING….to say the least;) tell mike that we need insurance coverage,better understanding within the schools between students and teachers,general ed along with special ed teachers need more training in autism!the family needs treatment just as well as the child (its a family journey) and the siblings need to be included because they are going through this battle as well….and we do need to keep the research going if not for us
    but for our children and their children and for those who want to have another child but
    scared due to not knowing why or how’s)

  16. So proud of you Jess. I know that whatever you say, will be said well. You know the issues, and you know what kind of support that families need. GOOD LUCK.

  17. Awesome!
    I would emphasize that although most services out there are geared toward kids, there’s a huge number of autistic adults who need profound understanding and support. These are the people who were diagnosed at older ages (when the incidence was still 4 in 10000!) at a time when almost nobody had heard the word “autism”. They didn’t get early interventions, walk teams, or publicity. And they are struggling. Providing services to them now will help pave the way for the services our kids will need in the future.
    Good luck! You are an amazing mom and a wonderful advocate for us all!

  18. Speaking from a personal perspective – In my area we could use more doctors who specialize in ASD’s and more places that provide therapy. There are 2 in my area and both have REALLY long waiting lists. After months of waiting for a doc appt, you then have months of waiting for a therapy slot. Then when a spot opens up, it’s at 1pm on a Tuesday … ya know … when there’s no-one avail to take the kid there. We don’t have time to sit around and wait. Our kiddies need services now!

    Thanks … I’m excited for you :-) Can’t wait to hear how it goes. I know you’ll do us all proud.

  19. First, like so many others here, tell him “thank you”.

    Second, please implore him to make some reform in insurance rules. The fact that some kids cannot get therapy because insurance won’t cover it is unacceptable. These kids are our future, and early intervention and therapy are proven to be successful!

    Third, education reform. My children are blessed. Our special education programs are pretty good. So many are not. I am floored by the number of people who don’t get the IEP services we do.
    Fourth, like Alysia mentioned, the support of industry and corporate America to help provide jobs, training and transition. Our kids deserve the chance to highlight their talents and contribute to society.

    I’m sure there’s more….but thank you for asking! So excited for you!

  20. I want him to know that as parents of a 14 y/o autistic young man, we are attempting to plan for his future. We have no road map, no guide lines. No SAT scores, no pages-long-lists of after school activities, athletic achievements, scholastic awards and “traditional” accomplishments. No meetings with guidance counselors. No wish list of colleges and universities. We are making it up as we go along. Special Needs Trust Fund, Assignment of Guardianship (where to put his 12 y/o NT sister on that list was super fun *insert heartbreaking sarcasm here*). I want him to know that we are TRYING, but we could use some help, some direction. What more do we need to do to ensure that this wonderful young man has a full and exciting future? A future that includes some measure of independence and personal fulfillment. The same future every parent desires for their child. That’s what I want him to know.

  21. FIrst, how amazing! Amazing both that you get to do this, and that you want to know what we think. For me? I’ll attempt to shove Niagara falls through a drinking straw, because you asked and you’re awesome like that.

    We’re drowning out here in the country. The last agency I tried to get therapy in-house (so Ryan’s not missing three hours of school twice a week for me to drive him the 50 minutes one way for ABA at Baylor) told me that they’d put me on a waiting list because there’s one therapist for our area. By area? I mean several counties. We are a one-teacher’s salary family, both with college educations, and we can’t figure out what do to other than keep pedaling and praying that the money to drive out there holds out, and that another therapist would rise up who loves these kids and wants to take t them and us by the hands and HELP US figure out how to help him. We are taking advantage of medicaid for Ryan and HIPP (Health Insurance Payment Program) for us, and because of HIPP, ends are meeting for the first time in four years. For that we are thankful.

    More than any of the money junk (because honestly, even with the money there’s not enough hours in the day)… I want him to know that no matter how much you have, when your child is getting bigger and to the point where he might hurt you or your younger children (accidentally, of course) during a meltdown, its indescribably heartbreaking. To have NO IDEA what started it, or what made him so angry and/or scared that his whole body turns red, and he’s sweating, crying, and flailing, and to be completely running out of options of how to help or even properly deal with him behaviorally and emotionally, is a fear I can’t describe. It’s a heartbreak I can’t describe. The future? We have one fearful foot in the future, okay maybe just a toe… but every look scares the bajeebers out of us.

    What would I tell him? We’re drowning. We’re scared for Ryan. But we aren’t gonna drown without a fight. ;-)

  22. I have nothing new to add – just THANK YOU – to Mike and especially to you. The mental image of you sitting in that room, with hundreds and hundreds of us “behind you” has tears rolling down my cheeks.

  23. We have a fabulous frontline team, but they fight uphill battles with administration at EVERY level- from ignorant vice principals who think our kids are “junk” and “Wastes of resources”, through district, state, and even federal levels with the same unfortunate attitude. The society as a whole needs to learn the value of education and the purpose of accommodation. We as a people need to understand these things not only on the elementary level, but also in the general workforce. Learning to value people for the skills and ideas they can bring to the table, rather than judging them on their ability to move their arms or speak with their mouth, is something we have long lost.

    Also, mental health support for kids with disabilities is SEVERELY lacking. We had a real crisis last year stemming from an improperly handled school transition, and were put on six-month waiting lists just for evaluation. The best we could have done was the local community services board, but we made too much money to be eligible to use the services (and we need the income to pay for the speech, occupational, and visual therapies our kids need!)- and it was still a 2-week process just to be considered, and then a 3-week wait for service. Fortunately, our family doctor stepped in and put our child on anxiety medication; but not all doctors will do that, and we still haven’t gotten him in to a proper psychiatric evaluation. The child was trying to jump out of cars and was running in front of garbage trucks saying “I want to die!” AND WE COULD NOT GET HIM HELP. What part of that could possibly be right?

    • I second this. My daughter came out of the foster care system (adopted) and she cannot get mental health support other than meds. It doesn’t matter that she is self-harming, having nightmares and so on because of the trauma she has been through. They say she is too impaired to benefit. Even if they would approve it, though, there are no providers any where around to provide counseling or ABA or anything. Our state is sorely lacking in resources.

  24. Jess, you’re going to be great! How amazing this is happening for you…for all of us!
    -I agree on a mandate for services covered by insurance. Expensive. YES. But caring for adults with more involved care needs that could have been addressed when they were younger if services were accessible….way more expensive.
    Thanks!
    -Beth

  25. Jess- Thank you for all of your efforts and for being a voice to our community. I believe healthcare coverage and access to care / services nationwide is one of the big ones. I also really feel strongly about early identification and better training programs for pediatricians/ family MD’s . We know for sure early intervention is proven to work. Thank u again!!!

  26. That all families are suffering with the burden of trying to afford appropriate and necessary interventions & therapies. That we should not have to go bankrupt to provide services for our child that taught them their name & how to make sense of their world. That schools are not doing enough & do have the resources & trained teachers, aides and staff to support the laws that state best & least restrictive environment, not just babysitting. That insurance companies are stringing us along with loop holes & the waiting game. That most state laws are inadequate. That if this country doesn’t wake up & figure it out the cost of what will happen with the 1 in 88 when they are adults because they were not given the therapies they need WILL debilitate this country!!!

    That what they are NOT doing is unconscionable….

  27. Thank You Jess!
    Maybe someday my FB status post won’t be what it is today….”(insert tiny sarcastic whisper) yay….Transitional IEP meeting at LHMS this morning :/ OH WAIT….let me rephrase that…..ummm….waste of time because they(most of ‘em) totally disregard everything the minute I walk out the door. That is if they had even listened in the first place.”

  28. I’ve been told my 13 y/o who has ADHD and Tic Disorder may be on the spectrum (though not officially diagnosed). Even though there’s a chance he may not be on the spectrum, I follow your posts/blogs and think you are just amazing. The work you do, the voice you have, the time you put in; all for kids who cannot now, but could one day is awesome!

    Every parent, no matter the diagnosis or extent of diagnosis, wants the world for their child(ren). All that is needed is the opportunity. Schools, companies, towns, cities, counties, states and the country should think about this and come up with ideas that will allow access to those opportunities to everyone; especially to those who would not otherwise have that access.

    Not being officially on the spectrum, the only thing I have experience with is the high price of OT and the very limited number of OT sessions covered by health insurance per calendar year. Just when we see some progress, we run out of insurance coverage and have to wait until the next year to continue (6 months of waiting and trying to continue some of the therapy at home on our own).

    Thank you for all you do Jess! Thank you to Mike Strautmanis for being so open and for being a path to the highest office in this great country!

    Jess, you are amazing! Much love and respect to you! You are a champion to children and families everywhere!

    MIchelle

  29. White House? NBD for you.

    First, please thank this man for listening, helping.

    – Adult support
    -Military Families
    -Insurance coverage
    -lack of consistent information in medical community
    -schools not able to serve students who are on a spectrum, from the high (my daughter, who received nothing) to the low (students who are virtually forgotten)

    Thank you, my friend, for all you do. And thank you Mr. Strautmanis.

  30. We need the administration to ensure coverage under the Essential Health Benefits package for autism spectrum disorder. And not just diagnosis .. meaningful treatments. Guidance from HHS has been vague to date, even though the underlying testimony in Congress was very much autism specific. We need them to follow through for the sake of mllions of families impacted by this.

    We need them to NOT tie our funding under the Combating Autism Reauthorization Act to other appropriations. (They recently shifted us to that model and now our funding is in peril.)

    We need them to advocate strongly for CMKAA.

    We need them to pass ABLE.

    We need them to continue to be reminded that the voices of self advocates are critical.

    We need them to continue to be reminded that many families of severely impacted individuals cannot attend hearings, Hill Days, the events that many others do .. their voices are critical too.

    There is so much more, but I’ll stop right there. Thank you, Jess, for being such an effective, beautiful voice.

  31. Jess (and Mike) — First, thank you. Second, autism research and URGENCY is a matter of national security. If the numbers keep increasing what will happen to our economy, our school systems and our medical facilities? This is an epidemic and it is not being given the same urgency and attention that it deserves. We need MEDICAL research. Research. Research. Research.
    I’m tired of reading that obese moms can trigger autism, that living by a highway can trigger autism … why not get to the root of the issue and stop funding studies that only make the mothers feel even more guilty.
    As we go into the election year I am looking for the candidate that recognizes the seriousness of the issue and is not afraid to fund studies that look at the full impact of the vaccine schedule and all the adjuvants the vaccines contain.
    I’d also like to see more research on the glia cells of the brain funded and I believe it should be MANDATORY that pediatricians actually TREAT children on the spectrum. A referral to a neurologist and a shrug of the shoulders is not medical care.

    And therapies should be covered by insurance. I’m losing my home to foreclosure in a week and it is because once we paid for the occupational therapy, speech therapy, genetic blood work, applied behavioral therapy, vision testing, hospital emergency copays and supplements … there was nothing left to pay the mortgage with. I chose my child’s health over keeping our home. That is not a choice I should have to make as a mother of a child with a diagnosed medical problem. AND — I had health coverage at the time.

  32. First, thanks to you for being a great source of information and inspiration for me. We are relatively new to this whole thing. We were lucky that my boy was diagnosed early and that we live in a “generous” school district. There are so many kids and families that are not so lucky, and it is not right. All kids should get the help they need. Thanks to Mike too, for listening.

    I think education for the educators is very important. They all need to be “on the same page” regarding kids that are anywhere on the spectrum.
    Ignorance only hurts these kids and their families.

    Also-services for military families, insurance coverage, and family support are extremely important and very much needed everywhere in this country.

  33. Yes, yes, yes to a federal mandate. Helping our kids shouldn’t be a fight. We need services, and we need to be able to access them.

    Thank you for being a voice for so many of us.

  34. First, Thank you for being a voice that someone will listen to. I know so many of us are avocates for our children but no matter how much we do/say, not everyone is will/wanting to listen or help. I hope that by you going and speaking for everyone in the autism community, that all the issues and struggles that each one of us has will be heard. I know that this is the first step of many and I know as a community we will be behind you to move things on to the next step.

    Like other parents have said,

    Education, starting with those who are there to diagnos all the way up the chain.

    Better and more early intervention programs avalible, and more within each community so families are not driving all over their county/state trying to get sevices.

    Insurance that covers ALL the expenses for all families; not picking and chosing who gets the best or any.

    Education in the school systems, from teachers to parents to classmates and the schools being able to teach and assist children properly. To really understand their needs and that they are unique and special learners.

    Programs in place for children transitioning from teenage to young adults and adulthood. Having programs where they are learing a trade to make them a productive adult and contribute all of their wonderful gifts to society.

    Thank you again.
    Debbie

  35. Hi Jess,

    First, thanks and good luck with that meeting, and then, regarding topics for discussion, I see three issues per time line:
    1. Immediate – Money. More funding for EI, schools districts, adult services, academic research.
    2. Short term – Insurance. That all federal programs and mandates, and all entities that receive federal money cover autism and that all organizations that are now exempt through ARISA are covered.
    3. Long term – DSM-5. This is the most damaging long-term policy change (other perhaps than republicans wining the November election) on the horizon. Autism needs many more sub-categories, not less as the ability to identify sub-categories is crucial for more advance treatments. Just imagine cancer treatment if we were to define all cancers as either head, chest, abdomen, other. Basically, I would like the Fed to say that they don’t buy this DSM-5 nonsense and that in the absence of more and better sub-categories, they will stay with DSM-4.

    Thanks,
    Shaul

  36. Jess, thank you for being a voice for our community! I will echo the topic of health insurance coverage. It’s crucial that children diagnosed with neurodevelopmental disabilities receive all the services they need through their health insurance plan. This needs to be a federally mandated law with NO EXEMPTIONS! Also, co-payments should be waived for ongoing therapeutic services related to the ASD diagnosis as parents are paying thousands of dollars in co-payment fees each year. I also feel that the families that are living with and raising these special children should also receive coverage for the necessary support services that they need such as therapy, counseling, sibling support groups, etc. Eustacia Cutler (Temple Grandin’s mom) has made this very clear in recent years and she has created a foundation (with Temple) for this specific reason. Best of luck with your meeting!

  37. Thank you, Jess, for being a voice for us. And thank you to the Administration for listening. Here’s what I would say…we as the autism community are not asking for anything those not impacted by autism ask for for their children, and what we as Americans hold so dear…equal opportunity. In education. In access to medical treatments. In employment. In housing. In research. In policy making. Though autism makes our children different, it does not make them less and whether we are writing policy, planning community support initiatives or just being an average citizen and going about our day, we must always realize our undeniable connection to each other. Talk to the people who live this; the families, the self-advocates, all the stakeholders and learn from us. Together, we can right the ship.

  38. I want to know why an education diagnosis and a medical dianosis aren’t the same flipping thing. If my child has a Med diagnosis, why do we have to go through more testing of the same kind?? How many times can a child take the same ADOS before they know what to do to get you to leave them alone? Why does some eye contact cause people to dismiss a diagnosis? Isn’t it a spectrum? Not ALL kids are the same. I wish, pray, hope for some unification for us and our children. Some understanding, some willingness to support our kids no matter what. JUST like they do for the millions of other challenges that children face.

  39. I echo so many of the thoughtful comments above and add that full funding for IDEA needs to be discussed.

    When my son was dx’d by a major children’s hospital in Boston (because I was fortunate enough to have insurance coverage for a complete neuropsych eval), we were told that our next step was to go to the local school district and that the school would provide all the services listed in the lengthy report – from full school day, full school year, 20+ hours of ABA, OT, S/L, etc. We received a medical diagnosis and then were passed on to the public school system.

    The disparity between schools within a single district and school districts within a single state is huge. The disparity in schools from state to state is even bigger. Access to necessary services and treatments should not depend on where you choose to make your home. It is fundamentally unfair that children in one school, one district, one state have more or less than they need for support services for medically necessary autism therapies.

    If families do not have the resources or insurance coverage (as discussed in other comments) and can only rely on the public schools for services, IDEA and all its requirements must be supported.

    Thank you for listening. Jess is a wise and wonderful advocate for our community.

    Love you Jess!! xo

  40. I know this is asking a lot, but please mention that there’s a spectrum beyond the spectrum. That there are children, like mine, who are not on the autism spectrum, but who have developmental delays and challenges and who also struggle mightily day to day just the same. And that these children, regardless of their diagnosis or lack thereof, also need support and resources.
    Thank you, and good luck!

  41. Thank you Jess, for being our voice! And thank you Mike, for listening!

    HR 2288 needs to be pushed through the system! It is awesome that active duty military dependents can get ABA and other services, but it is a terrible injustice that the children of retirees (both medical and those that served 20+ years) cannot! These men and women gave up so much for us, the least we can do is to give them what they need to help their kids. My husband, who served over 20 years in the Army, is currently working in Afghanistan as a military contractor. He’s been doing this for 6 years, and will continue to do it as long as he can, so we can afford what our son needs….how is that right???

    There needs to be insurance reform! Being able to get your child the help they need should not be dependent on how much you can afford out of pocket, and parents should not be pushed into mountains of debt to get their child help. ABA is not experimental, it is a proven method of helping our kids.

    There has to be education reform! While some districts are awesome, and have wonderful programs and services for kids like ours, others don’t even seem to know what autism is, much less what to do for our kids. Our school district serves over 30,000 students…but has no autism specific program, will not put aides in inclusion or mainstream classes, and does not consider sensory issues an educational problem so they refuse to address them until the child is disruptive…and then they are addressed as a behavioral problem. It was so bad that we ended up pulling my son out and homeschooling, because i knew without a doubt that he could not handle an inclusion class with 17 kids in it without an aide to help him, and his “support” team admitted that they would not be able to challenge him academically in a developmental delay class. And I know several other families who have had to do the same thing, for the same reasons.

  42. My child is 7. I am scared of the future. What it will mean to have an adult child who may be developmentally delayed. The options are minimal, and that is being generous. I would love to see “caseworkers” similar to DCF caseworkers, that help families with this diagnosis navigate the services and options, and help them advocate if necessary. A system that included a national UPDATED registry of ABA therapists, and other specialists, so that we parents aren’t spending months on the phone and the internet, trying to find the information.

    And the military families, absolutely, are a priority.

    And finally, the savings account for our kids that is tax exempt.

  43. Federal mandate on autism health insurance, with NO caps, NO $ limits and NO age limits! Double or triple research money. Spend money on research on what to do for our kids who are here, not just on causation. Mandate adult services, including housing, social security, housing, meaningful vocational training and services, etc. Reward companies for hiring people with disabilities. We need affordable types of housing, all different types. Improve educational services and make school districts provide well-trained behavior specialists and good academic and behavioral support for students with autism. Do not let school districts abdicate their responsibility for special education accountability. Cover autism treatments, especially ABA, under Medicaid. Recognize BCBA as a reimbursable credential for both educational and medical purposes.

  44. So many important things said above. I will add my humble opinion…I would love for the administration to consider inclusion of all people in all parts of life a must. This is about schools, communities, work, etc. That inclusion in schools isn’t about…let’s see how they do in the regular classroom, and when the child doesn’t have the right support to succeed and crashes and burns, we yank him out to a specialized classroom – because it’s obvious the child cannot succeed…as opposed to the adults around them working harder to make it work.
    If we had a mantra of inclusion – real, honest to goodness respect for all – a lot of our issues would get taken care of. But realistically, we need the support of presidential administrations to help with money to have the right programs in place to take care of the rest of it.
    Good luck with your visit. I’m sure you will do great and get the priorities right for what needs to be heard.

  45. Tell him Thank you.

    copying akbutler: “And my big one: Coverage for autism therapies shouldn’t depend on where you live, what your parents do for a living, or what school district you live in. Like health care, every child needs insurance coverage for speech, OT, ABA, etc.”

    Our insurance didn’t cover anything, ANYTHING, beyond an evaluation for the diagnosis. We couldn’t afford to pay out of pocket for any service. We turned to the school….and there the budget is shrinking and shrinking and shrinking.

  46. As often as it’s been said, I know you’ll be conveying our thanks — but I’ll say it too. Thank you to the listeners, thank you to the magnificent messenger (that’d be you!)

    So many needs. I’ll echo CB’s comment though — full funding for IDEA. President Obama raised the issue in the 2008 campaign, and stimulus funding gave a temporary swipe at it. There’s support from both left & right (even the American Legislative Exchange Council wants full federal funding for IDEA, though they then want to gut IDEA and give the money to private schools who don’t want to be regulated, don’t get me started…)

    The funding was a promise that came with IDEA in the first place, and we’ve fallen short pretty much ever since. Our kids deserve better!

  47. Jess,
    I love your positive voice in our community, and I’m honored for you to represent us. If I can say one thing to Mike, it would be Semper Fidelis. This is a phrase among Marines that means “Always Faithful”. I ask for his help to keep faith with our military families and provide the medically recommended behavioral health treatments (ABA) our military children with autism require. This is something that can be fixed today with his help (oh…and a phone call from our Commander in Chief).
    Semper Fi, my friend.
    Karen Driscoll – Marine Corps wife, mother of 3 (one with autism)

  48. For right now, a Federal Insurance Mandate that provides a required minimum level of insurance required coverage for children with Autism. My son turned 7 a few months ago, and that very day, insurance stopped paying for any services related to an Autism Diagnosis. They can do this because my insurance is self funded through my very large company and they don’t have to follow any state laws. Only federal. We need $55K per year out of pocket now to get Dominic the therapy recommended by not only his neurologist, but every researcher out there that has studied ABA and Autistic kids. We are out of money, and its our son (and future taxpayers) who will pay now that the one therapy that’d been successful is being removed.

    Also, more money to finding the environmental triggers that cause the regressive form of Autism.

  49. Everything! I’m sure you will be able to sort it out but I have been meeting with local candidates for town commission on a single subject – what happens when our kids grow up? Independent housing with supervision is what I am discussing. (Our town is already pretty good with students.) Of course, our military, too. Very big on our military. They defend us so we must defend their families.

  50. Remember the military families that have served faithfully; and don’t deny them coverage upon leaving the service because their usefulness to the government is over — their wounds and sacrifices continue to haunt them and they continue to pay the price for peace long after they leave the service. I would like to see the Commander in Chief remember that he is OUR Commander in Chief and its not just a title to us and it shouldn’t just be a title to him. We need him to lead with ferocity.

  51. I am a proud Army wife and mama to two autistic boys. I’m reading your post from a hotel room, because we fly to our next duty station tomorrow. I am humbled that you have picked up the banner for families like mine– military families who can’t afford to retire because we would lose coverage for our kids. Instead, after 19.5 years of service, we are choosing another deployment to Afghanistan. There are so many important topics to cover in those 30 coveted minutes. I trust you’ll find a way to say what most needs to be said. You always do.

  52. I wish I could hit ‘Like’ on most of the above comments! I think you’ve got great agenda items already! Ra, ra, ra! Cheering you on!

  53. Jess,

    Way to go. Thank you for all your work. Please request funding committed towards the autism research and discovery of treatments. We have put AIDS under control in the last 10-15 years. Let us devote next 10 years on Autism.

  54. Talking, with Jess or anyone else, for that matters, is cheap. We need action. That means pushing these issues to the top of the DPC and OLA agenda and working with Joining Forces to make a legislative push to get things done. Don’t get me wrong, JFs is fine and all, but until it starts tackling hard issues, I see it as not much value added.

  55. Oh gosh, I hate to take up 2 spaces but can I add that while my son does get some of his speech therapy and OT covered by insurance, they won’t cover his anesthesia for dental issues since as far as the insurance company is concerned, a child doesn’t need to be fully anesthetized to fix a cavity. But MY kid does. There’s NO WAY he will sit with a gas mask, much less let a dentist drill in his mouth. Insurance also won’t cover his visit to a feeding clinic because they say he hasn’t been diagnosed with anything that makes feeding/eating physically difficult. Yes he has. He has autism and DOESN’T EAT. I just would love to see insurance companies do more than the bare minimum. I’m sorry if I’ve ranted or gotten too personal.

  56. Jess, congratulations on a return visit, and a huge thank- you to Mike Strautmanis for lending his ear once again to our community. There are so many issues unfortunately, but the one that always comes to mind first and foremost is Early Intervention. It’s time for a federal mandate that every single state in our nation must recognize a child’s autism/PDD diagnosis, and in turn should be required to provide some type of scientifically-based therapy that addresses the core issues of autism. Now that better diagnostic tools are available, children are being diagnosed years before they turn three and are eligible for educational services in the public schools. Every family should have access to more than just occupational, physical, and speech therapies once their child has the diagnosis. Intervening early is not only one of the few proven ways to help our kids, it is also simply the right thing to do. It’s time for all states to be required to change their policies to reflect that need.
    You’ll do great!

  57. I don’t have time to write much, but any insurance mandate should have to include self-funded plans. I work for a VERY family oriented company in a state with an autism coverage law, but because it is a self-funded insurance plan, they don’t have to cover OT and other services for autism, and so they don’t.

  58. There is NO ONE I would rather have represent this community than you Jess! I know you will make the absolute most of your 30 minutes with Mike and again you will leave an enormous lasting impression!

  59. mandate insurance coverage for speech, ot, pt, and ABA across the board. Every child deserves the chance at an independent life. They can’t do it without these therapies!!!

  60. I’ve been reading your blog for a few months now Jess, and I know that you will say what needs saying… thoroughly, eloquently and with determined purpose.

    As the grandmother of 2 beautiful boys on the very low functioning end of the spectrum, I would tell him something I’m sure he already knows firsthand… that I worry every single moment of every day of my life about what will happen when my son and daughter in law, my husband and myself, the aunts and uncles…. are no longer around to care for these precious boys who at 2 and 4 have barely uttered a single word between them… will they have a safe place to live? Will they be cared for and loved? Will they have all the things they need and deserve to be mentally and physically well taken care of?

    The constant struggle: the clawing and fighting.. for… every… single… benefit… the struggle to navigate the mazes and roadblocks, the struggle to advocate and advocate productively… …these struggles need to end now.

    I am still new to this. The pain is still overbearingly raw at times…. (and right now I cannot imagine it being any less)…. My heart breaks into a million pieces for my son and his wife who have been blindsided by 2 “severe” autism diagnosis’ in 2 years time. Finding resources, funding, any kind of help ….should be the last things that we as parents, grandparents…and as a community in the good old U.S.of A. – should even have to think about.

    And yes, I know everything I’ve just written has been felt and said many, many times over and is not very profound, but I thank you for the opportunity to vent.

    And I thank you for all that you continue to do.

  61. solid services to help children with autism/special needs and parents of these children transition into adulthood when they age out of the (school) system. I get anxious thinking about where we will be and how to navigate that when the time comes for my daughter. While services aren’t exactly working smoothly for kids, there is a system in place that works generally well. It’s when these kids become adults and the lack of a refined system to help them worry me. That keeps me up at night.
    cg

  62. Failing military families with ASD children is so deplorable – especially since the military are paid so little – that I would make that a priority before helping the rest of us, who are in better shape.

    We need educational options for our kids in their public schools; this is such a spectrum, yet systems try to shoehorn our kids into regular programs that don’t quite fit with an aide rather than developing new approaches. Gov’t money well spent in our town was a two-year grant for a city-wide autism specialist (the grant paid half, the city paid half) and she would trouble shoot existing programs, facilitate communication between parents and staff, and develop and implement new programming options by working with both parents and the system. Every system has some staff that are “weak links” and this position helped alleviate issues with those staff.

    No system would ever pay for an ombudsman like this; it only happened because there was a government grant.

    Kids on the spectrum need small class sizes. This rarely happens. Usually, a child is failed first, parents threaten to sue, and the kids ends up in a private SPED school a bit too far from home.

    We need financial incentives for school systems to try to meet the needs of our population. Otherwise, since they don’t want to pay, they will do as little as they can get away with.

    Extended year and extended day are an obvious need for many who cannot make a year’s progress in a school year, for social maturity or academics. Yet, school systems don’t embrace this, and fight it. What there is is too few hours, and usually not really appropriate – just the cheapest option. Even in my wealthy town.

    Thanks for listening. Some of these kids, given the right help, can become tax payers instead of welfare recipients, or just need less- and cheaper – support in the long run. It’s a good investment.

  63. I’m not sure if this has already been said so If so, I’m sorry. From an educators perspective…I think it’s important that ALL (including Specialist, custodians, ISS, principles, secretary’s, etc.) parties involved in any school system should have some sort of training on how to interact with our kids. Short and sweet!
    GOOD LUCK!!!

  64. Of all the terrifying and frustrating things that happened when getting our son diagnosed 6 years ago was being told by a pediatrician that my two year old needed to see a neurologist. I was given a list of 10 names. I could get an appointment with one and that was for a year and half later. Other doctors were willing to put me on a waiting list again for no time sooner that a year and a half. Also none of these doctors took insurance. All required payment of $1,500. So it didn’t matter if there was ins coverage for autism testing these doctors would not take it. A few years ago the state of Connecticut was going to do a study to find out why there were higher incidence of autism in lower Fairfield County than the rest of the state. Happily no one wasted money on that and maybe someone figured out it was because more people in lower Fairfield County had the $1,500.

    II was able to get my son into a study being conducted at Yale because of a tireless phone campaign. So he was seen by a team of doctors 6 months after I was told he needed to see someone. I thought being told my son needed a neurologist was going to be one of the scariest times of my life. As it turned out needing one and not being able to get access was even scarier. I was ask by one office if I was willing to travel, I said of course. I live in Connecticut. I am a few hours from
    Boston or NYC of course I will travel for an appointment. They mailed me a list of areas where one could get easier access. It California, Arizona and Wyoming. How could this be true I said to myself. But I did what we mothers do I wouldn’t take no for an answer. Maybe you could bring up access to neurological staff as an issue. Perhaps it’s a bit better now but that was a difficult time.

    Thanks for all you do.

  65. Here in Pa, we have what is called the disability loophole, which funds autism treatment not covered by primary insurances. The system is not perfect, of course, but it means we get services if we stay here, a 600 mile drive away from all of our family in MA. As has been said before, a child’s access to therapy should not depend on where they live.

    Another very big concern is employment when they are older. I have three children on the spectrum, ranging in severity from Aspergers to nonverbal, regressive autism. They will all be employable. They all have talents. Tax incentives, training and job placement programs are critical. Scholarships and assistance to those able to attend college in whatever way they can – physically or virtually- are vital.

    Invest in these children. They will succeed in many different ways, and they will pay society back, over and over again. Just think of the many entropeneurs who have or are suspected to have autism. Their potential can only be realized with your investment, and it is more than worth it. Thank you for taking the time to work on this.

  66. Please tell him that the taxpayers can’t afford NOT to have a federal mandate. And BTW it also happens to be the right thing too! You go girl!

  67. Jess, first, I am so proud of, and excited for you. What an opportunity.
    I unfortunately do not have time to read through all of these responses yet, so I might be repeating…but (as I have said many times, I am not an Autism Mom, I am a teacher) teachers need the support and backing to provide everything that these amazing children need and deserve. I do my best every day to serve, teach, inspire, and LOVE the students I work with. I fight against the local schools to get these kids what they need and deserve. I work privately and DREAM DAILY of having the ability to open my own school/center where I would KNOW that the kids are being treated as they should be and are being allowed to reach their full potential. It gets exhausting on a day-to-day basis fighting for the students, for the families, and for the things that I know in my heart are right.
    Backed by the government or not, I will continue the fight for the kids I am blessed to work with…but some help from higher-up would be welcomed with open arms. Each and every child on the spectrum that has entered my life has profoundly touched me, THEY have taught ME. Oh, if I only had someone to share all of my ideas and dreams with…if we ALL could come together to make this a better country…a better WORLD for all people on the spectrum…ah, I could go on forever.
    I may be a “pie-in-the-sky optimist”…but I truly, completely believe that my ideas could change the future of the school system…I need to find a way to be louder than I already am…hopefully Mike can pick up the microphone and help give voice to people on the spectrum, their families, and yes, even their teachers.
    *all fired up, but putting the keyboard away*
    Thank you, Mike, for reading…I know you want these things too for your angel.

  68. If we could start ADDING teachers to schools, instead of consistently taking them away and get back to reasonable class sizes, it would benefit everybody. Not only are the teachers overwhelmed just by the number of children they teach, but they also need to have a better understanding of kids on the spectrum who are being “main-streamed”. Many times they are asked to do this with little-to-no extra training.

    Not only are teachers not being trained appropriately (due to funds being cut), schools within the same district are fighting over who “gets” the Resource Teacher or are spreading him/her too thin amongst multiple schools.

    The needs are simply not being met across the board for our kids. It leads to a lot of unnecessary frustration no matter what way you look at it – teachers, kids, parents. It’s set up to be a lose/lose/lose situation.

    Setting everyone up for success would be:
    -consistently ADDING teachers so there will be SMALLER classrooms. STOP cutting from education and start adding!!! I admit, I don’t have a clue how, but I do know it needs to happen. My son’s class has 30 students. It is ridiculous and just too.many.kids… especially when more and more kids have IEPs, etc.
    -each school should have their own Resource Teacher, who knows the ins-and-outs of ASD. The kids need the support, the teachers need the support and – with statistics as they are – a Resource Teacher would clearly be kept very busy at just one school and work wonders in creating a healthy school environment.
    -teachers need to get consistant, extra training on how to help and accept kids with ASD. My family has personally had good school years (in a state and district where they were known for being on top of ASD needs) and also personally experienced horrible school years (in a state notoriously bad). The good school my son was thriving in an environment where the teachers accepted his quirks and saw his amazing talents. The bad school, my son was vomiting every morning due to the stress of such a toxic environment. His teacher had NO idea what to do with him. He went from his first year on Honor Roll to multiple Fs. Educating Teachers is HUGE!

    Not only would these steps help kids on the spectrum, their families and their teachers, but by putting money back INTO education, it will help ALL families and the community as a whole… whether they have family members on the spectrum or not. win/win/win/win! That’s what I’m talkin’ about! ;)

  69. 1) We must have Congressional hearings on autism NOW. Autism must be declared a national emergency NOW. Tens of thousands of children and families suffer every day of the week. Can we afford to wait until 1 in 10 are diagnosed with autism?

    2) Research dollars need to be poured into looking at autism causes stemming from neuro-immune dysfunction. Science says that an epidemic CANNOT be due to a developmental or genetic disorder, it can only be caused by a DISEASE process. I’m not talking about bio-medical or environmental causes. The only way that an autism “epidemic” (autism 1:88, polio 1:1500-2000) is possible is by a disease process. Whatever reason or start, in the end autism is expressed through a potentially treatable and preventable complex neuro-immune, complex viral disease process. Looking for environmental factors is not recognizing that whatever environmental insult, birth insult, or other, the end result is a child’s innate neuro-immune system becoming dysfunctional.

    3) Please tell him about President Obama’s home state of Illinois: In terms of per capita spending on people with special needs, Illinois ranks behind every other state and the District of Columbia. Illinois ranks 47th in the nation in spending on community services for special needs and dead last in the development of community living options. Also, with Illinois facing a potential $10 billion deficit that includes a backlog of about $1.2 billion in unpaid bills for public schools, districts throughout the state have been slashing teaching and administrative positions left and right. This forces districts to cut services for special needs students and puts special education programs in jeopardy, especially if the money doesn’t come soon.

  70. awesome, Jess! You will be the perfect representative. Please tell him that the nonsense between the school and medical field needs to stop. It is ridiculous that my child is diagnosed as autistic by the U of M, but according to the school is not autistic enough to get services. And because the school won’t provide services like speech, ot, & pt, the insurance won’t pay because they say it is the school’s responsibility. Because the school won’t give her a dual diagnosis, we cannot qualify for the state stipend to cover expenses for expensive items like weighted blankets or speech therapy on our own. They refuse to give her counseling because they say she won’t benefit from it because she is too cognitively impaired, yet the school claims she is only mildly cognitively impaired and not autistic. This mess between the school and the state has got to stop. It benefits no one. This is the state of Michigan.

  71. I’m late to this party! But I’ll still add that there’s an important conversation to be had about autism and higher ed.! And ditto AKButler on Stemforce. We’re having Garret out this Fall (which she had a little something to do with), and he is definitely Being the Change,

    Karin

  72. Jess and Family – I hope you are having a wonderful time. We’re following the posts and photos and can’t wait to see what’s next.

    For Mike – As I work in higher ed, I thought I’d direct my comments to initiatives there. The Model Comprehensive Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSID) provides grants to institutions of higher education to enable them to create inclusive transition and postsecondary programs for students with intellectual disabilities. It has been a wonderful program and TPSID needs to continue to be funded after FY12. Also, access to loans for comprehensive transition programs needs to be expanded beyond the current Pell grants and work-study and we need ABLE accounts to deal with educational and other long term expenses.

  73. Ditto what everyone said ….and you will nO doubt have all the right words and represent us and our children better than anyone else could! You go girl! Give ‘em hell! We are all behind you!

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