Generation Rescue Seeks Community Input on White House “List”
By Kelli Ann Davis
Last Wednesday, the White House held a special disabilities briefing with the CEOs from 75 non-profit organizations which included Mark Roithmayr, president of Autism Speaks. When I found out about the meeting on Friday, I immediately made several calls to top White House officials in an effort to set-up a private meeting between us since we were not invited to this important briefing. Within a few hours of my calls, I received an e-mail asking me to submit a “list” outlining key “issues to discuss” in response to my request.
In December, Generation Rescue submitted several “high priority issues” to the Transition Team (thanks to Julie O. for helping me comprise the original list) but now, I’d like to expand and refine the list and I’m asking for input from the community to help me do this.
Please feel free to add your own “high priority issue(s)” which you think the White House should address and/or comment on any of the current issues already listed below:
A National ASD Strategy, developed by a panel of experts on ASD approved by the stakeholders, will identify targeted outcomes, establish measurable goals and timelines, and create accountability for ASD research.We recommend within the first 100 days the President appoints this panel with the purpose of developing a National ASD Strategy that communicates a sense of urgency reflecting the alarming increase and prevalence of ASD, and declare autism a national health emergency.
Establish A National Institute of Autism (NIA):
Currently, autism research is fragmented among at least 5 institutes within the National Institutes of Health (NIH).
We recommend the President issue a directive to the Secretary of Health and Human Services (HHS) calling for the establishment of a National Institute of Autism not only to eliminate the fragmentation, but more important, to serve as a central location from which the planning, management and coordination of all ASD research stems. This 28th Institute under NIH would significantly enhance the effort to identify and prevent Autism Spectrum Disorders at their earliest stages and foster the research of innovative treatment interventions to help reduce their impact.
Appoint Federal ASD Coordinator to Oversee All Federal ASD Efforts:
By establishing one top-level point person to coordinate ASD efforts in the White House, we will ensure that ASD receives the recognition and priority it deserves in the federal government.
We recommend this person be representative of the ASD community as a whole, committed to independently advocating on behalf of those affected.
Fully Fund the Combating Autism Act and Federal Autism Research Initiatives:
Since the bill has been enacted, federal funding for ASD has not increased to the levels authorized by the Combating Autism Act (CAA). The CAA authorized $645 million for NIH research over five years, but the plan falls short by close to $200 million.
We recommend the immediate funding of the CAA in its entirety in order to more urgently and effectively develop treatment and discover cause.
Establish an Autism Advisory Board (AAB):
As outlined in the report language of the Combating Autism Act, as well as in a letter from the Science and Technology Committee on July 14, 2008, an Autism Advisory Board should be established to better serve the interests of those affected by autism.
Recommendation for such a board accompanied the bill in the form of a House Statement made by Congressman Joseph Barton, then Chairman of the House Energy and Commerce Committee, stating, “The Secretary may also provide other formal mechanisms, such as an Autism Advisory Board, to provide public feedback and interaction with the IACC. Further, the Secretary may opt to provide such a mechanism under existing statutory authority, without the recommendation of the IACC.”
We recommend the President issue a directive to the Secretary of HHS to establish an AAB, with input and participation from the public.
We further recommend the AAB be comprised of qualified public (non-government) representatives, equally divided among community stakeholders, clinicians and researchers. This board will provide much-needed stakeholder feedback, guiding the autism strategic plan to find cause(s) and treatments to help the most persons with autism in the fastest way possible.
Support Special Needs Education for Children with ASD:
Barack Obama and Joe Biden have pledged to work to change IDEA’s definition of “autism” to Autism Spectrum Disorders to ensure that all children diagnosed with ASD disorders receive the support they need.
Unfortunately, abusive behavior towards ASD children within the school system is becoming more wide-spread; a combination of poor training, lack of supervision and undefined standards, has placed many children in harms way.
We recommend each school district have an Autism Compliance Office which will coordinate and ensure the following: staff training; a Behavioral Intervention Plan (BIP) for every child; and strict monitoring on the use of punishment (time-out rooms and restraints) with severe penalties and/or convictions for any violations of the BIP.
Furthermore, school districts who fail to incorporate an Autism Compliance Office should be subject to a loss of federal funds.
Thanks for your help and I’ll keep you posted.
Kelli Ann Davis is the D.C. Political Liaison for Generation Rescue
What about doing a study on children who have RECOVERED from autism?
Find out what's working! Kids ARE getting better and leading normal lives. That's got to be more cost effective for our country.
Thanks for all you do.
Posted by: Sunny | April 29, 2009 at 10:34 PM
THANK YOU for doing ANY thing and EVERY thing you can. I agree with all your suggestions, in addition to adding a serious underlining to the mandatory insurance coverage of biomedial treatments, ABA therapies and so many of the hundreds of lab testings we do.
THANK YOU for all the parents and grandparents and for our beautiful children that we are fighting to see become functioning,happy adults!
Posted by: Debbie Alvarado | April 29, 2009 at 10:36 AM
Much better funding of high quality adult services especially community based services for those severely afflicted that do not respond to treatment or for those that we have been too late to treat.
In Illinois there is a n institutional center called Howe in Tinley Park. The disabled are being abused and dying and our State officials are still funding this place even though Federal funding has been stopped due to abuse. This should not be allowed. These poor disabled people are being mistreated. The local newspapers have written to close the place, but they are still open and our State officials let it go on. It is a disgrace. More than 25 deaths due to abuse or neglect have occured at this place. Only some are autistic, but this is an outrage. The President needs to hear these stories.
Posted by: Kim Murphy | April 27, 2009 at 07:59 PM
Yes, cover all alternative autism treatments, biomed including vitamins, minerals, Omegas anti-virals etc, chelation, HBOT, more adult stem cell research, Chinese medicine, speach therapy, ABA, anything that is working for some. Let some well known highly respected Dan's run it, but with an open minded parent board to anything that works.
Also, yes more training for law enforcement about autism. In Chicago policeman beat a severely autistic 15 yr old.
Much better funding for schools, so cost is not an issue when helping these children.
Yes, testing for pregnant moms and babies to look for vulnerability. Also, look at a reduced vaccine schedule.
Posted by: Kim Murphy | April 27, 2009 at 07:46 PM
Biomedical treatments should be covered by insurance, and biomedical interventions should be included in medical school, on the aap website, on the cdc website, and on the nih website.
Posted by: Beth Monterosso | April 27, 2009 at 01:30 PM
Every chid diagnosed should be covered by medicaid no matter incomes, and ABA should be covered also and be priority for medicaid.
Posted by: Elsa Maniscalco | April 27, 2009 at 11:14 AM
We need medical coverage for treatment given by DAN doctors. Our children can heal if we can treat them with the DAN protocols . For many parents, the cost for DAN treatments are too costly and these children arent given a chance. Another concern is residential facilities for adults with autism. There arent nearly enough in this country. Doesnt the government have a responsibility to help these people.
Posted by: Kristina Wehr | April 27, 2009 at 11:08 AM
I think it should be mandatory for schools
to have properly trained staff and to implent appropriate services such as ABA for
our children. We live in MS and services for
children with Autism are very limited due to
the lack of knowledge of school officials
along with the unwillingness to change.
I would also like to see something done in the way of vaccine safety.
Posted by: Kim Saucier | April 27, 2009 at 11:04 AM
I know I am late in commenting but we need:
* support for biomedical intervention especially in the form of coverage for supplement deemed medically necessary by a doctor.
*better labeling of products containing gluten and casein.
*better training of public servants (police, fire, etc. in recognizing and assisting those with ASD.
*support for adults with ASD in employment, housing and independent living.
Thanks for offering us the chance to contribute.
Posted by: Maria | April 26, 2009 at 07:39 AM
Thanks to ALL of you for your comments. I will be compiling these points and revising the list so it's ready for the White House on Monday!!! (That's the goal anyways ;-)
This is a HUGE deal and it's been a big help to me -- sometimes, all of it can be a bit overwhelming -- to say the least.
(I have soooo many projects on my plate I feel like it's Thanksgiving and I'm pigging out and for the record, I HATE pigging out and rarely do it!!! But in this case, it comes with the territory ;-)
Posted by: Kelli Ann Davis -- YOU ALL ARE GREAT! | April 24, 2009 at 02:41 PM
Institute a version of the "Amber Alert" system for our children - and affected adults - who wander.
Expand Project Lifesaver to a national basis (ie. every city, town, village, etc.). Not just a mandate that it be done, but have funding provided as well.
Extend ECHO program benefits to retired military servicemembers (the last I heard this program was only for active duty servicemembers), and if the requirement still exists that the ABA therapist working with the affected child must have a BCBA, remove that requirement. Requiring a BCBA is a very good way to get out of reimbursing for ABA.
Require all first responders to be trained in how to effectively deal with children and adults who have autism.
Establish programs for our children for when they "age out" of what the school system provides.
Regarding insurance mandates, do not let there be a requirement that the ABA program must be supervised by a mental health professional (psychologist or psychiatrist) in order for the ABA therapy to be reimbursed. Also, do not let there be a requirement that the therapist must be BCBA.
Posted by: Carolyn M | April 24, 2009 at 10:35 AM
DAN Drs. should be covered by all health insurance companies, along with the medications that go along with chelation. Manufactureres of vaccines made accountable for their ingredients. Pediatricians made aware of the effects of giving multiple vaccines at one time. Take away the HePB vaccine following delivery unless otherwise mother has tested positive. Test for the Epidurals for their effects on newborns, or do away with it.
Posted by: Peggy Anderson | April 24, 2009 at 01:49 AM
With one swipe of his pen and at no cost to the American taxpayer, President Obama can effectively curb the current autism epidemic and save the country billions of dollars by eliminating future ASD cases. I suggest that the President be advised to take the following actions:
1) Until the precise causes of ASD are fully understood, I would advise the President that it would be prudent for him to direct the CDC to recommend a childhood vaccination schedule based on the 1983 vaccination schedule; i.e., the vaccination schedule in use before the rate of autism began to so drastically increase;
2) The CDC should recommend that doctors test key vitamin levels, e.g., oil-based vitamin A and vitamin D levels, as part of the well-baby checkup process and prior to every inoculation. If the vitamin levels are low, doctors should advise parents that no additional vaccines should be given until a subsequent well-baby vitamin level test indicates that the vitamin levels have been restored; and
3) The CDC should recommend that women of child-bearing age have their body’s heavy metal load tested on a regular basis and prior to becoming pregnant, e.g., using a biomarker test such as a porphyrin test. If the heavy metal load is determined to be high, a potential mother should be advised not to become pregnant until her heavy metal load is decreased. An expecting mother should be advised regarding how to safely reduce her heavy metal load, and should be advised to delay vaccination of her child until the child’s heavy metal load is decreased.
Posted by: John Hemenway | April 24, 2009 at 12:08 AM
We need all teachers, aides, bus drivers to go through comprehensive behavioral intervention training. Law enforcement should also have a similar requirement. Funding for standardized federal guidelines for these requirements should be at the top of their list.
While we're at it, standard requirements/guidelines for the proper ciriculum for autistics in school systems should be at least tied to the availability of federal school subsidies.
We also need some availability for extra funding for housing and assistance for adults.
Let's get better standards for requirements for those professionals who provide therapies for our kids.
Doctors should also be required to understand the differences in diagnostic and treatment of autistics. Medical problems should not be allowed to be easily dismissed as behavioral issues. Research into the medical cocommitants of autism should be another priority.
Posted by: livsparents | April 23, 2009 at 10:43 AM
Chelation and all other biomed needs to be put into main stream. It works often enough and well enough and really even beats most heart and cancer treatments in terms of benifits for it to be relegated to fringes of medicine. Best of all, it helps a child, and its benifits will pay off for decaded per child, not a older person.
Education for the kids needs to be streamlined, standards set nationally and public schools cannot be allowed to drag their feet. In fact autism diagnosis should entitle the child to a school grant which can be given to the school that best caters to the child's needs. ABA ought to be a rule as should ESY, strict after school where they get the kids playing in a controlled environment as well as anything else the kids and parents need in terms of monetary and other support. Spend the $ now and watch these kids turn into super citizens, or scrimp now, and take care of them as they are wards of the state all their life.
Vaccine safety is an oxymoron. Needs to be defined as such.
Posted by: Srinath | April 23, 2009 at 09:01 AM
I believe the CDC should no longer be in the business of assessing vaccine safety. They have been the primary cause of all of the foot-dragging, ever since Simpsonwood. They already know vaccines cause neurological defects, including autism. Let's put the serious research into the hands of a new, unbiased, untainted, scientific commission charged solely with finding out the real answers to the scientific questions.
We will not have the truth until we strip the CDC of its power to keep hiding the truth from us. Did you know the CDC is part of the Dept. of Defense? Their world view is "collateral damage" happens. I want the view "do no harm" to be the guiding principle in vaccine safety.
Posted by: Nick's Mom | April 23, 2009 at 08:22 AM
Push for support/funding for various teaching modalities; not just ABA. Behavioral is fine for some kids, but not others. We needed a relationship based modality; Son-Rise from the Autism Treatment Center of America: http://www.autismtreatmentcenter.org/ Our kids are not one treatment fits all, and parents should be able to choose what works best for there individual child.
Posted by: Nicole MS | April 23, 2009 at 01:23 AM
DAN/Biomedical treatment needs to be covered for our men and women in service to our country.
I am tired of taking the heart breaking GR phone calls from spouses of deployed troops who can not get biomedical treatment or adequate therapy.
Posted by: karenatlanta | April 23, 2009 at 12:59 AM
Establish a national physician education program so every state has doctors who know how to medically treat children on the autism spectrum. That is, actually running some labs and then understanding what they mean, prescribing treatments and following up on the progress. A big step up from "here's your script, goodbye."
Posted by: nhokkanen | April 23, 2009 at 12:27 AM
Oh, I've got another one! How about that all death certificates for deceased infants where the cause of death is unknown, inconclusive, SIDS, cerebral hemorrhage or encephalitis must be accompanied by a certified copy of their vaccine record?
Posted by: Garbo | April 22, 2009 at 11:24 PM
What about some kind of program to help single parents of special needs kids financially? Some of us have no one to watch our kids so we can work full time and so are forced to live WELL BELOW the poverty level. We can barely afford to keep our basic bills paid and obviously cannot afford the treatments, special diets, etc. even if they are Dr. prescribed, Medicaid simply does not pay for the things these kids REALLY NEED
Posted by: Lindy Schultz | April 22, 2009 at 10:11 PM
Please don't forget services and supports for teenagers and adults - these are sadly lacking. Not everyone is getting 'recovered.' Those who are here now and are young adults need jobs, living arrangements and community support. We need research into best practices for these supports as well.
Please don't forget our teenagers and young adults.
Posted by: chantal Sicile-Kira | April 22, 2009 at 09:24 PM
study the 5,000 injured group we,they already have. vs. a unvaccinated healthy group..study the cluster groups in nj and the somalia group of affected babies.. look at the kids that have recovered and the ones who have not..do the science,, find out what the political , medical, ramifications of living in a global society really mean, seems like global economy is equal to our children being acceptable damage.. candace
Posted by: candace passino | April 22, 2009 at 07:22 PM
MUCH more involvement of parent groups in decision making/reviewing process when it comes to autism strategies. Name several organisations like yourselves.
Establish prevalence figures ASAP across the States.
Push for legislations on transparency of everything to do with autism. And of vaccines.
Push for appointment of an Autism Tzar - someone who would be 'approved' by parent/grassroot organisations as having the best interest of children at heart, and whose office would work closely (and transparently) with parental advocacy organisations.
Posted by: Natasa | April 22, 2009 at 04:24 PM
Sent another e-mail to the White House about an hour ago giving them a "head's up" on Jim's Huffington Post piece and our current "brainstorming" session:
"Also, I've asked our community to submit their thoughts on key issues they feel the White House should address regarding the current autism crisis. Once I compile them, I'll send the new, updated list to you for your review."
They've responded back and are expecting a revised list within the next few days!!
Please keep the suggestions coming.
As the saying goes, "Two heads are better than one and in this case, multiple heads are even better!" ;-)
Posted by: Kelli Ann Davis -- White House Update | April 22, 2009 at 03:13 PM
Update and modernize the VAERS system, and make VAERS reporting mandatory rather than voluntary.
Make the VAERS reports meaningful by having someone actually follow up on the reports and DO something with the data. Like, study them and get the medical records and find out what these people might have in common.
Put in place a law that when a vaccine is recommended by HHS/CDC, ALL DOCUMENTATION of that vaccine and its regulation automatically becomes public and immediately accessible by anyone who wants to see it. All clinical trial data including raw data, all post-release follow-up data, adverse event reports, manufacturing inspection reports, FDA compliance issues (I'm talking to you, Merck), marketing dollars spent. This is the price the drug companies must pay for the huge profits that the FDA/CDC rubber stamp gives them. Total transparency for any mandated vaccine -- if it is part of the public health program, then it is all public. Nothing is a company secret.
Demand an approval process untainted by pharma influence. Remove from ACIP, FDA and CDC any officials or experts with financial ties to pharma.
Develop science-based, written guidelines for safe parenteral dosages of vaccine excipients, particularly aluminum, including for infants who are premature, underweight, or immune compromised.
Mandate that CDC must consider, before adding a vaccine to the recommended schedule, whether the additional excipient levels exceed the safe limits based on scientifically-derived safety guidelines.
Require that for all mandated vaccines, all vaccines from the same manufactured batch have the same lot number, and that each lot be tested not only for efficacy but also for levels of excipients and contaminants before being released.
Posted by: Garbo | April 22, 2009 at 03:00 PM
I'd like to see support for a national insurance mandate for autism treatment modeled after one of the states that did it right- no loopholes. Our kids are sick and it's time that insurance companies stop denying claims for medical treatments for our sick kids!
Posted by: Kristen | April 22, 2009 at 11:30 AM
Not that it would help, but I can think of two autism related issues/requests.
1. Abolish the vaccine court. Vaccines are very profitable for pharmaceutical companies. How the hell can we have a special kangaroo court for a BUSINESS? Vaccines are big business. They don't make these things as a public service, and the notion that they do is one born from the very corrupt scumbags that were paid to say it in the first place. (choir preaching)
2. Lift the statute of limitations on vaccine injury. How can we have a statute of limitations when the US government refuses to admit that they can cause autism? If everything says they're not responsible, how can those who believe the government, or believed the government in the past, be excluded from being able to sue for damages? (probably more choir preaching)
I think at the LEAST the legislation should be amended to exclude cases where the injury is still with the victim. If you get injured, heal, and then decide not to sue for 3 years, tough luck. If you get injured, and 3 years later you are STILL INJURED, you should be allowed to sue.
Of course you might be met with "How do vaccines relate to autism or other disabilities? There is no conclusive evidence, blah blah, blabbety blah, blah blah, you're screwed."
Good luck, and like I tell everybody about to sit down with politicians, hide your wallet.
Posted by: AutisticLiving.com | April 22, 2009 at 11:08 AM
The one thing that most needs doing is a vaccinated versus never vaccinated study, but it needs to be done in a very open fashion by independent researchers. That is the only research that is really going to answer the question of whether having your child fully vaccinated is a good idea, or not.
I agree with the previous poster that there needs to be individual freedom to make medical choices for oneself and one's children--NOT any limiting of choices to "evidence-based" or "standards of care" selected by bureaucrats, "experts," "advisory panels," insurance companies, or anyone else.
Too many kids have improved health from non-standard treatments. So there needs to be lots of effort put forth to insure that alternative treatments and helpful OTC supplements continue to be available to those who wish to use them.
Somehow the FDA needs to be revamped to get rid of the influence of pharma, so that dangerous drugs aren't approved/recommended as treatments, and to prevent the agency from making important supplements unavailable OTC, for any reason. Recent reports indicate the FDA is currently removing OTC access to certain forms of B vitamins as well as DMSA. Both are used widely, and effectively, if parent reports are accurate, to help metal-toxic kids get better. This seems very oddly coincidental to me. Hmm. What's next? Alpha lipoic acid? Vitamin C?
Whether or not CODEX worries are real, there needs to be work to guarantee that all people can continue to obtain vitamin, mineral, enzyme, and herbal supplements in potentially useful concentrations, OTC.
If we aren't free to make health/medical choices for ourselves, we are not a free people and this is not a free country.
Posted by: Sue | April 22, 2009 at 11:01 AM
FREEDOM to decide and choose what is appropriate medical care and treatment for our children.
This means an individuals rights over the state is protected and respected.
It also means think tanks cannot decide what is an appropriate treatment on statistics alone. Insurers and government agencies make exceptions to "evidence based" modalities when a child responds to something that others may not. Individuals should have the right and funding to try and pursue these avenues.
Posted by: Keith | April 22, 2009 at 09:15 AM
It would be better if you ask Jenny McCarthy to help you come up with a list. She gets to the meat of the matter really quick. Such as - the problems with the vaccines. Such as - make them green. Such as - too many too soon.
In addition, I am not sure why Generation Rescue needs to tell them who to appoint or what to do or how to do it. Shouldn't that come later, after we tell them what the problem really is, at the grassroots level? Right now, the White House thinks like the CDC, that diseases are a plane ride away (heard the President on the Europe trip). There is much they do not know and I am unsure who is supposed to be telling them.
Posted by: FWIW | April 22, 2009 at 09:03 AM
Is their a link to the list anywhere? It would be interesting to see who was on it?
Posted by: Dale Todd | April 22, 2009 at 09:02 AM
Why not ask Dr. Bernadine Healey to become part of this project? She has the credentials and has an open mind about causality.
Posted by: Julia Kunkowski | April 22, 2009 at 08:28 AM
Direct a federal mandate to support National Academies' recommendation that parent education must be included in public schooling of students with autism in order to improve academic and functional outcomes for individuals with ASD.
Recent rates of autism counted and studied by the Centers for Disease Control and Prevention must be made available to the public.
Reiterating that a Vaccinated vs. Unvaccinated study in the U.S. be funded and rigorously conducted revealing ALL health outcomes.
Posted by: Alison Davis | April 22, 2009 at 08:13 AM
Review of recently passed Autism insurance and service bills. I have found many have more holes than a screen door. They make the politicians feel good and we always get a clip of a thankful crying mother but when it comes time for a claim or service, the support is not there. We need a White House policy directive that gets us all on the same page.
Also I feel very strongly that the have and have not society is getting greater. We need to have a national ABA initiative.
We Also need a rural initiative for services. Families without means to get to a metro area are being left behind on services. I know city folks are being neglected as well but it seems that funding is directed there first.
Posted by: Tanners Dad | April 22, 2009 at 07:00 AM