game on

*

We are looking forward to your participation in the Autism Awareness Month event on Monday, April 25.

You will hear from senior White House and administration officials. You also will have the opportunity to discuss your experiences and ideas with other stakeholders in the Autism community as well as with government officials. We hope to have a robust discussion and exchange of ideas.

We will provide further details when you arrive at the White House.

*

Please note that the opening part of the Autism event on Monday from 11:30 AM – 12:00 PM Eastern will be streamed live on the White House website at

http://whitehouse.gov/live

 Accordingly, please circulate this information to your networks so they can watch the proceedings live between 11:30 and 12:00 Eastern.

**

Please see above.

There – the information has now officially been circulated to my ‘network’.

Now, down to the brass tacks, my friends.

What do YOU want the senior White House and administration officials to hear?

I leave tomorrow.

Game on.



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60 thoughts on “game on

  1. Please respectfully remind him that many families living with autism are also serving their country in the military or foreign service, and we require extra support for our children throughout their lifespan. Also, we’d really like to see his house blue! :-)

  2. If you can tell a part of your story, you will be telling a part of ours. The White House needs to understand that autism impacts entire families not just the child with the ASD. Our country needs to do more to figure out what we are doing environmentally to trigger such an increase over the past couple of decades. The theory that it is overdiagnosed or recognized better does not seem to match the statistics.

  3. I just so proud of you and all that you’ve done to get to this point. If you speak from your heart, you’ll be speaking from all of our hearts. We’ll be watching the game beaming with pride.

  4. Treatment for medical issues to be covered by insurance companies. Please no rigamaro, jumping through hoops or “not recognized” as a valid diagnosis. This is a lifelong disorder, consequently medical issues will continue throughout the life of a person with autism. Thanks!!!

  5. Have you ever been at a loss for words or ideas, Jess? If so, I don’t remember. I am one very proud Mama, once again in awe of you.

    I love you,
    Mom

  6. I know I am Australian so this post is not as relevant however, our country does follow some of the things that the US does, so autism awareness in the US might occur here but even if that isn’t the case, just generally:

    Ask them to listen, not act like that photographer, ie nod and then do whatever they like that doesn’t take into account anything that they have been told.

    Perhaps tell them that as stated in Temple Grandin’s movie our kids are “Different not less” therefore accommodations that are made validly for different nationalities need to be made for people with autism who have differences in ability.

    If you speak to Mrs Obama, perhaps highlight the plight of the military families, I saw her on The View the other day saying how little she had known about what they went through and she was talking generally, I wonder how shocked she’d be to know what those with ASD kids have to go through.

    Perhaps print out your blogs and bind them into a book and present it to them so that they can read it at their leisure.
    Then they’d get your stories and everyone else’s as well – so not just one person’s words.

    E

  7. I can’t think of anything to tell them that you haven’t already thought of & aren’t already going to say. You are so articulate and full of light, I am sure you will speak your mind but from your heart and beautifully represent us all.

    One thought, though, since they are bureaucrats… remind them that every dollar spent on autism today is reducing the burden tenfold tomorrow, as all these autistic kids are going to be autistic adults in the blink of an eye.

    Whether they are to be contributing members of, or drains on society then is DIRECTLY traceable to whether or not we do everything we can right now to help them realize their fullest potential.

    Money spent on autistic kids is an INVESTMENT in the future of our entire country, not a give-away to a small fraction of the population (as it has been painted by the hateful idiots).

    Thank you, Jess. Can’t wait to see and hear you represent on Monday!

  8. As you well know, properly educating a child with autism takes more than just a degree in education. Many of our children are not receiving the education they deserve, despite the best efforts of our counties. We need more teachers trained to sufficiently instruct our autistic children. We need more classroom aids, so the few we currently have aren’t overwhelmed. This is exceedingly critical, especially with the frightening rate of new diagnoses. Thank you so much, Jess. If there were anyone that we would want speaking for us, it would without a doubt be you.

  9. I would want him to know that although I am SO proud to be a part of a State Child Health Insurance Program (SCHIP), that it breaks my heart every time I have to explain to a family that has a child with autism that our benefits do not cover autism, that speech, occupational, and physical therapy is limited to 24 visits in 60 days for conditions “in which significant improvement can be expected. That although I have no clue what the solution is, and yes I do know all of that costs money, that there is no amount of “I’m really sorry” that really bridges that gap on the phone line between me, that parent, and their treasured child.

  10. Tell them that not only are our kids being diagnosed in droves, but that there is no access to appropriate treatments thru schools or medical professionals. And that ERISA needs to be reformed so that children can have affordable access to medical treatments n

  11. How about that depending on where you live, services vary WILDLY! WILDLY and INEQUITABLY! That is true state to state, of course, but it varies within counties city to city. And even classroom to classroom. I want to know why educational services are so dependent upon where you live. I want access to the best programs because they are the best programs, not because I’m left to choose my local school because that’s what I’m deemed to do. What happened to waivers? I don’t want to live in fear that my child’s education and development are dependent upon our geographic location. Please share too that the Autism Waiver in MA to get extra money for services was only granted to 150 families. 150! The rest of us are left in the dark. And we’re tired. And our kids need support. And we need support. So much support. I’ll think of more too.

    • And one of the ironies in that waiver money is that I work with our local Arc and provide services to families on the waiver, but my own child doesn’t get that money. He doesn’t get those services. Irony all over the place.

    • Absolutely! The school system in which we were zoned had been placed under a consent decree for their failure to provide appropriate education for children with special needs. We had to sell our house and move to another county in our state to find appropriate educational programs for our daughter.

    • I think that’s the most important part. It shouldn’t matter where you live. There should be a federal law mandating insurance coverage. No child left behind has to include our kids.

  12. I agree with everything posted so far, and I want to emphatically add to Sheila’s post: When I called our insurance company (Blue Cross/Blue Shield) to find providers for our daughter’s ABA therapy, I was told that Autism is specifically excluded in the policy. I asked why. The answer was that “autism is an educational issue; not a medical one.”

    Now, would the president please find out for all of us just how a neurological disorder is an educational issue?

    Also, I just started a blog. But feel free to share it with the president momofzoe.com

    Jess, you are an inspiration to me — it helps so much to know that it’s OK and even therapeutic to write this stuff out.

    Love,
    Jen

    • I emphatically agree with this comment! I live in Michigan also and have BC/BS. My son has ADHD, SID, and Autism. They DENY everything and link back to the educational issue. Very costly and very frustrating. Advocating for appropriate services is like walking through a minefield and after 8 years of the this, I think I have PTSD. And I’m serious. The whole system is designed to make you give up and let the insurance companies keep their money.

  13. More federal funding for research! Without funding, we cannot find cause, treatment or cure. With the rate of autism at epidemic proportions, federal funding is desperately needed! Also, as Sheila mentioned above, insurance needs to be required to cover services for ASD and schools must take responsibility for their part. Schools throw the ball back to the insurance saying it is a medical issue and then the insurance throws it back to the schools saying it is a learning disability. Every state should have mandated hours of therapy for children with ASD that would begin at age 3. There are several studies that explain the cost effectiveness of early intervention and behavioural therapy. (http://vistabehavior.com/Publications%20and%20Articles/EIBI.htm)

  14. And please tell them. I know that you will anyway, that autism is a full-time job. Many families struggle to try to make ends meet so that they can care for their kids. That is true in our case. First my husband was out of work for a year, and now I am. Someone HAS to be home with my little one. Who do you trust your child to? Who has the training and spirit to do what we do and be successful? The short answer I have found is no one does. No one is more vested than a parent. SO, my next question is, how do we live? How is it that we can afford to have a home and feed our families. We’ve moved 3,000 miles and resorted to living with my parents, but that can’t be forever. We need our own space. We need our own place, but that isn’t going to happen because my full-time job is unpaid.

  15. Have a safe trip. I live here in DC. Please contact me if you have any issues or needs. Russ and Susan have my contact numbers. Good luck. You are doing a great thing for all of us.

  16. As support of our military is a federal issue, I would emphasize the impact of service on families of children with ASD. Finding the services a child needs and developing a support network is difficult and time-consuming. Doing it every two years is a Sisyphean task. We need to do better for the families who serve this country.

    The other would be pushing for recognition of autism as a medical/neurological condition, not a “developmental disorder” excluded from medical coverage. The insurance companies’ exclusion of therapies puts an increased strain on public resources when families with good insurance coverage need to seek state sponsored therapies to help their children (thus reducing the avaialable assistance for children with no insurance) and the strain on those families when additional private therapies need to be paid for out of pocket. The insurance companies’ current profit margins are cutting into the ability of families to adequately prepare themselves for the future, for the children to receive the therapies they need to be productive, contributing members of society and ultimately their families will also require more public assistance as the parents age because they have had to mortgage their future for present help. The federal governement, along with states and companies need to start taking the long view and see how present practices are affecting everyone’s future.

    Whoops that turned into a bit of a rant there, but I am sure with your eloquence you can appropriately couch the message so it can hopefully be heard.

    Thanks for being our flag-bearer (again)!

    Rebecca

  17. Echo all of the above!

    And that *Autism is a spectrum.* Neurodiversity produces extraordinary scientists, musicians…even politicians and policy experts. Enough with the public media boogeyman of Autism. All of the challenges and heartbreaking, bank account busting, family wrenching difficulties of Autism are real. We need awareness and support–obviously. But the gifts–for every family touched by Autism and for our society– of neurodiversity are real, too.

    Go, Brooke’s mom.

    Karin

  18. That there needs to be better insurance coverage. There are those of us that are stuck in the “middle.” We have insurance, but it doesn’t cover autism. We make “too much” money (haha) to qualify for most state/county services. Our insurance company sees autism as a “black hole” (their words, not mine) because there is no guarantee that the child can be fixed. It is heartbreaking to know that we can’t provide our son with the therapies that we need because we simply can’t afford them.

    THANK YOU!!! You rock.

  19. that we worry constantly about our kids’ futures. that the wait list for proper placement when they age out of the school system is ridiculous. that government workers who are suppose to help dont’ answers their phones or call back. that autism is a financially devastating to most.

  20. Insurance coverage for ABA! It kills me to go to my insurance website, see ABA as a suggested treatment and then read the policy of the same insurance carrier who states it denies coverage because it is experimental and unproven!

  21. Dear Senior officials –

    I think you should know how expensive it is to have a child on the spectrum… even one who is high-functioning, like mine. We NEED both health-care access and insurance reform to mandate coverage for a variety of treatments. We need the arbitrary line between medical, behavioral and educational therapies to disappear so there is less time spent arguing about whose job it is to provide the treatments or pay for them and more time and resources spent delivering them. We need you to understand that if we are to support and help these children grow into adults who hope to function independently at ANY level, who will not require full time care and support by others well into adulthood if not for their whole lives, then these children need varied interventions early and often. And we need to be able to access and afford them.

    My daughter sees a behavioral therapist once a week, and participates in a social skills group once a week. Because these are considered educational, not medical interventions, they are not covered by our insurance. Her public school couldn’t, or wouldn’t, provide the accommodations, including reduced class sizes, that she needs to function, so we pay tuition at a private school that can and does. Not because we wanted her in private school, but because otherwise, my bright, funny, sweet mainstreamable girl literally shuts down.

    She doesn’t participate in girl scouts. She doesn’t take ballet or gymnastics or karate. There will be no summer camp for her this year. Not because we can’t find programs for all of these activities catering to special needs kids, but because after paying for her therapies and school, there just aren’t dollars left over. As for her neuro-typical sister and her activities – well, there are no family funds for those, either. What there IS is an abundance of parental guilt and stress that while her parents knowingly and willingly sacrifice to get our ASD girl the supports she needs, it is not her sister’s CHOICE, and it is not fair!

    As I said before, we are the ASD family who has it easy, with a high functioning child. She doesn’t NEED 30 or more hours a week of ABA therapy. She no longer requires PT or OT – she can and does feed and dress herself more or less appropriately, can bathe and toilet herself without assistance. I can only shudder when I think of those families and how they are getting by, and what they are choosing to do without.

  22. Okay I wanted to send you an email but I don’t see an email address to do so. So lets see if I can write what I want to write carefully and if you want want more info you can contact me via my personal email which you have. When you visit the President Monday, tell him that Autism is closer than he thinks. It effects more people than he thinks. Like people who are trained to protect him, his family and the vice president and his family. And while these people are standing guard and putting their own lives at risk they have families back home who are just trying to get through the day! Send me an email Jess and I can give you actual stories and pictures to take with you. Things I will never ever be able to write on my blog but that someone should share.

  23. A study shows that we moms of spectrum kids have stress levels equal to combat soldiers. It affects OUR health. So, not only do I have to deal with my two kids, I have to deal with my health issues as well. So, yes, it is a whole family problem. I wish that beyond awareness, that people actually know what autism is. I’m tired of fighting insurance companies and school staff about basic needs. We need everyone to know that this is a whole child issue. Medical, educational, family, social. And, it has no end date. These needs will be with the children into adulthood – intense intervention at an early age can often help reduce the needs though.

    http://www.examiner.com/special-education-in-national/companion-research-studies-prove-moms-of-autistic-children-suffer-higher-stress-levels

    http://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/

  24. I may not be a mom, sister or aunt who has been affected by autism in my own family, but I am a senior Early Childhood through sixth grade Special Education major. I am from Texas, where just months from graduation my best friends and I are all being told that “necessary” budget cuts will mean that after four years of hard work, no matter how well prepared we may be, we will not have jobs. To me, this means that I will not be afforded the privilege of working with your sweet, beautiful and incredibly bright children.
    I love working with students with autism. They are an absolute joy to work with and I am extremely passionate about doing all that I can to help each and every student succeed, regardless of their autism “label.” I want nothing more than to put my knowledge and skills into action to help support your families in any way possible. I read your stories here, there and everywhere and am often moved to tears because I want so badly to help you in your fight. However, without funding for vital special education programs and the use of evidence based practices such as ABA and other awesome therapies in our schools (yes, in all 50 states!), my dreams of working with your incredible families are shattered. My dedication to and training in this field will seemingly be wasted.
    Jess, please, please, please remind the President and anyone else who may be listening that any cuts made to funding in education (federal or state) are not to be taken lightly. As someone stated earlier, any hasty decisions made now have the potential to manifest their negative outcomes many times over in the future – OUR future.
    Thank you for all that you are doing for our children. Like I said before, I’m not a mom, but I sure do love your kiddos. They inspire me each and every day to be a better, stronger, more sensitive person. :)
    Good luck! We’re all right behind you!!!
    -Jessica

  25. 1. Fund special education
    2. Autism insurance parity
    3. Neurodevelopmental benefits that don’t end at 7 (and no number of visit limits)
    4. Autism tax credit (like the $1000 tax credit) because many of the things that we have to do still won’t be covered if by some miracule they give us 1, 2, or 3.

  26. Hi Jess, to be brief- my wish would be that the fundamental flaws in the special education system would be addressed. Under no circumstance should parents be burdened by having to pursue legal action to have a child educated appropriately. IDEA isn’t complete, at least to me. Thanks.

  27. My Dear, you carry so much. We are all so grateful for your voice. Be at peace with this part of the journey – yes, it is huge – you are speaking for so many. But we all feel that no one else could say it better, more passionately, or with more impact than you.

    Thank you, for being our voice on Monday. YOU WILL DO GREAT THINGS.
    XOXO
    Love,
    Rachel

  28. I agree that IDEA needs to be fully funded and that we need insurance coverage for therapies. If we help these kids when they are young, they have so many more chances for better lives as adults. (And cost less.)

    Also, we need an understanding that autistic kids and adults are citizens and just as important as everyone else. Special needs individuals are a vital part of our diverse nation and need to be treated as such. Presidential leadership should make that clear by making sure this population is included in the national dialogue.

    You are going to rock this, Jess.

  29. So proud of you. Please convey that whatever he chooses to pursue, he has to have a spine and stand up to the Republicans who just want to block whatever is on his agenda no matter what it is. Autism is non-partisan.

  30. I hope it goes great for you. I’d like the Powers That Be to know that because my husband is a Federal employee, our insurance does not cover ABA therapy for my son, and they do not have to abide by the insurance mandate in Indiana. We were able to get my son his own policy which DID cover his therapy, but I know that all of the federal employees who live in non-mandate states would not be able to get it covered. My son is a citizen too, and he deserves fairer treatment than what he is getting.

  31. Well, tons of things, but mostly this: autism does not go away on your 21st birthday… us adults need services too! I am blessed to have amazing services through the state of PA, but many states don’t have anything at all.

    • Lydia, you’ll be pleased to know that Sharon DaVanPort (I may have misspelled her name) is also going to be there. She is an adult with autism and heads up the Autism Women’s Network. She’s fabulous!

      • Dr Stephen Shore will be there as well.

        I have yet to get a list of invitees but am hearing names through the grapevine. Would love to hear others if anyone knows of them!

  32. Please tell them that as much as we try not to think about it, we autism parents will not live forever and the wondering what will happen to our children when we are gone haunts us.

    There are a lot of children with autism out there. Someday they will be adults with autism. Who will have their backs?

  33. I would like to second *m*. Our children are growing up. There are HUGE waiting lists for services for adults throughout the country. Based on current budget cuts and possible restructuring of Medicare and/or Medicaid, there may never be a way to get off a waitlist and actually receive help. What will happen to our children when we are gone? Does the government want them to live on the streets? Some of you with children who have higher levels of cognitive functioning may NEVER see your children receive any support, but they may still need it..

  34. Tell them not only do they need to quit cutting the budgets on our special needs programs, but they need to give schools incentives to train all teachers in the public school systems to understand and support our children, not just the IEP teachers. Also, fund the states so they can successfully hire new teachers and teachers aides where they are needed, because my son is in a class with 21 other children and he is overwhelmed, overlooked, and sometimes ignored because his teacher only has an aide some days for a few hours in the morning. I know they need to work on the insurance companies, too, but maybe if we start w/the programs in public schools the insurance companies will not be able to deny that autism is a problem that spans the child’s entire life.
    Thank you, as always, for being our voice and our heart!

  35. Here late today… What an intelligently-written and comprehensive list. All I can think of to say is this. The people you will meet are constantly inundated with requests from worthy causes. Just bring your passion and eloquence to the table. Make them feel a connection, and make them remember us from the masses. I have absolutely every confidence you will do so in spades.

    Knock ‘em dead!

  36. Please tell the White House that we need insurance reform for services for children and adults with autism and other developmental delays/disabilities. I’m not just talking about coverage for ABA and other behavioral therapies, too. Our insurance only covers 20 visits a year for ST and OT. Most of our children need at least 1 or 2 sessions a week of these therapies, not 20/year. In our state, the waiting lists for ST and OT provided by EI are very long (several months), which is too long to wait, so we need private insurance to step up to the plate to provide the therapy our children desperately need.

    Please tell the White House that it only makes sense for insurance companies to provide these benefits. Studies show that it will not universally raise premiums the way the industry claims it will. In addition, the intensive early therapy will relieve some of the burden on the government for providing services to adults with autism or developmental disabilities by helping these individuals to achieve a level of greater functioning and independence.

    Tell the White House that if they don’t act to increase access to therapies and insurance reform now, they will be faced with the task of providing services for the alarming number of adults who will be affected with autism in the future. The prevalence of autism in our little boys is 1 in 70, of which my son is one of them. In the future, that will translate into 1 in 70 adult men with autism. That is a startling figure that the government should take into consideration when considering insurance reforms for autism therapies.

  37. Thank you Jess, for using what little time you have to share your stories, open your life to all of us through your blog, and make a difference by uniting us and getting the attention we need. There is so much that goes into raising a child with autism. I cannot say anything that hasn’t been said already: We need access to services to help our children grow and thrive. Therapies, support, parental education. Nothing was covered by insurance when my son was diagnosed, nothing. That needs to change. Now we fight the battles with the schools to get appropriate services and a proper education. That needs to change.

    Speak from your heart. You’ve got this.

  38. I agree with the insurance coverage comments. Even in states where there is a mandate, most exempt self-insured companies which includes many larger employers. The tax credit would be a great first step which could be put in place quickly. If they can put in tax cuts for home buyers and car buyers, then a credit for families who have dependents with special needs should not be difficult.

  39. Speak from your heart like you do on your blog and please also remind him that our children grow up. Even those who are high functioning may need help initially to adjust to college and/or jobs as well as life skills in general. Some will need life long help. However, with help they can and do contribute to society and they too deserve funding. Tell him a mind is a terrible thing to waste.

    Whatever you say speak from your heart for your girls and all of those on the spectrum. I know you will do us all proud!

  40. More federal funding for social skills training. It seems money is funded for ABA, and the school districts cover OT and speech, but social skills, the most important life skill one could have is overlooked. Thank you for representing us and please post pictures:)

  41. First off, Jess I am so proud of you! Please tell that person that there is a huge gap between IDEA and our kids. Our angels need medical services that insurance companies are not willing to pay.

    Last, make sure the president knows how upset we are that he didn’t lighted up his house blue. I even dreamed about it. Have a good trip and please keep us posted!

  42. Remember all the parents that follow DOAM are carrying you on their shoulders to this meeting, please do not carry the weight of everyone on your shoulders as you do this.

    Remember you can only do what you can do and whatever you do will be appreciated.

  43. Encourage him to help change the view of autism – from the tragic, hopeless image that is all-to-often seen in the media – to the reality of it…yes there may be challenges, but there is joy, hope, laughter, opportunity, etc., most of the time. I for one am seriously annoyed by getting the “I’m sorry” response everytime someone hears that my son has autism. Why are people sorry? I’m not. It’s because all people know about autism is how “tragic” it is. Encourage him to check out http://www.rethinkingautism.com.

    Also, here are some prime concerns:

    1. Special education funding.
    2. Health insurance – some individuals can’t even get basic coverage.
    3. Adult residential options.
    4. Adult employment opportunities/training. Maybe provide tax breaks for companies that hire/train those with autism and other developmental disabilities.

  44. HOLYWHATTHEHAVEIMISSED…. JESS – kickin myself for not being able to check IN. WOW – I know you blew them away, I personally couldn’t THINK of a better spokesperson!
    I can’t wait to read blog of update….. YOU GO GIRL!
    Kris

  45. WOW – 1 other thought, as soon as you walk in the white house will be lit up “ALL BLUE” FOR All affected…….
    and Thank you… Jess.
    Kris

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