What a Trump presidency could mean for autism families

The following is a transcript from the November 14th ASF science podcast, by Alycia Halladay, PhD

I had a podcast slated for today that outlined potential for biomarkers in autism. It was a follow up to last week’s oxytocin podcast. But then we had the election on Tuesday and it seemed a little inappropriate to not at least acknowledge that things are going to change in a big way, at least our new President wants them to, so there will be movement. I don’t know who you all voted for and this is not intended to bash Trump, but I think it would be useful to at least comment on some of the changes that could take place under a Trump presidency that are related to autism.   I’ll keep my comments short and to the point . I don’t think any person with autism or without autism voted for Trump because the rights of the disabled were their #1 concern.   This summary isn’t anti-Trump, it is “pro autism families who deserve to know what is at stake”.

Because he hasn’t necessarily been specific, I’m going to base my thoughts based on what he has said, not what the press has said, or what pundints have said for that matter.  I’m using his Contract With The American Voter as a guide.

Let’s start with autism or helping the developmentally disabled. He does not have a specific plan for autism, other than he has publically stated that he thinks vaccines cause autism and has been very vocal about that. He has not commented or made any statements about anything related to autism, such as the NIH budget, expansion of services or supports for people with disabilities. These are things that Clinton did lay out, but Trump has not.

From here on in I’ll focus on what he has said or policies he has endorsed that will affect the lives of families with autism.

Immediately he has said that he will add an additional federal investment of $20 billion towards school choice. This will be done by reprioritizing existing federal dollars. This is school vouchers. So instead of improving our existing schools and programs that need help, he will redirect money to fund the education of individuals at other schools. The problem with schools is overcrowding and lack of teacher incentives as well as training. Vouchers don’t solve that – so take that for what it is worth.   This could very well affect those individuals with autism who receive supports and services through their public schools, like my daughter. He also hates common core so much he has said he is going to get rid of the Department of Education. On of his first 100 days will be to hire someone to transition the Department of Education. Essentially, he wants to basically get rid of any oversight on education. I would argue that without some oversight and laws, schools are driven by money.   The ones that get left behind in this process are those that cost the most money – in other words, those with special needs.

Second, in his words, he will “Repeal and replace Obamacare with Health Savings Accounts (HSAs)”.  OK, love it or hate it, the Affordable Care Act (not Obamacare, by the way) put in place efforts to improve screening and diagnosis for ASD, improve services through patient navigators, and got rid of preexisting health care conditions that might have hindered insurance coverage. This means for the Americans that receive health care coverage for their child’s behavioral interventions through ACA insurance coverage, services will be cut or lost. He has a plan for private health care accounts and he identifies where Medicaid is lacking. However, his plan for Medicaid is to offer block grants which are discretionary. Instead of matching state dollars, block grants offer a lump sum and let states decide if they even want to contribute. Which let’s face it, the answer is going to be likely NO which means services will be cut. This isn’t a biased opinion, this is the general consensus of health care economists. Unlike current Medicaid rules, it doesn’t guarantee coverage for anyone.   Under a house republican plan for block grants last year, this plan would CUT $1 Trillion from Medicaid over a 10 year period. That would not only hurt the chance of people waiting for supports, it would result in cutbacks to those receiving care. But a democratic president, Obama, would haven ever let it through, so it was just a plan. Now with a republican president who has flat out said he is going to offer block grants to the Mediciad system, it will likely go through. Many people with autism are supported through Medicaid. I hope he keeps his commitment to Social Security in making sure it is not an entitlement and should be used to help those have a safety net who cannot do for themselves.   If he does, OK. However, he has specifically cited fraud in disability as a major issue and he has said he is going to tackle it. According to his calculations, one in 20 americans claim a disability. He says that is too much, but a separate database, the US Census Bureau, put that number actually one in 5 having some sort of disability. So based on those numbers, less people are claiming a disability than have one. Again, maybe there are people that don’t have a disability or have whiplash after getting bumped by a car or something, but I hope he does not use this as a way to cut disability payments or eligibility for those who are truly in need.

Third, which is actually second on his Contract with the  American Voter, is the institution a hiring freeze on all federal employees to reduce the federal workforce through attrition. This exempts: military, public safety and public health. That last one is key. Who is “public health”? Is he going to stop hiring health care workers at federal institutions like the NIH? Is he going to hire or get rid of some departments like the Department of Education, the Department of Health and Human Services? I mentioned he is planning on getting rid of the Department of Education because he doesn’t like common core and thinks that should be a decision left to the schools.  What does he see as public health? If he is going to call for a hiring freeze, he needs to be more specific.

Fourth, he wants to remove barriers to entry into free markets for drug providers that offer safe, reliable and cheaper products. He says that congress will need the courage to step away from the special interests and do what is right for America and that slowing consumers access to imported, safe and dependable drugs from overseas will bring more options to consumers. I just quoted him there.

So this all sounds good in theory, and I’m all for making more treatments available for more people. But one of the areas of government he’s targeting is the Food and Drug Administration, or FDA. The FDA, while it does have flaws, provides an important service. They closely examine the efficacy and safety of medical compounds like drugs and devices so that people are not getting cheated or harmed. Removing some barriers is fine, but I think what he means is removing regulatory barriers, which are there for a reason.   This may open the door for unregulated, untested, and dangerous treatments that prey on desperate families. Without rigorous evaluation, which will be paid for by insurance?   This is a big question with a huge need for answers. Without regulation and oversight, it will be the wild-wild-west in terms of selling snake oils and fake treatments to families who are the most desperate in need, and the least educated, on what does and does not work.

On the bright side, he does say that he wants reform of mental programs and institutions in this country. “Families, without the ability to get the information needed to help those who are ailing, are too often not given the tools to help their loved ones”. I think we can all agree on that. His stated motivation for that, however, is to deflect the responsibility for gun violence towards those who have easy access to guns with no business having one. He has shamelessly promoted the National Rifle Association and agreed with their illogical thinking about gun safety in the hands of  those with mental health issues. It doesn’t mean there can’t be gun regulation AND mental health reform.  But without a plan on how to improve mental health services for people it’s unclear what will happen. What does reform mean if he is cutting federal funding and reorganizing health care providing, and how is Medicaid going to play into it? Who is going to be in charge of these reforms? If Medicaid is cut, how are services for those with mental health issues who can’t afford them be paid for?

And it’s not just about money. I mean, it is sometimes, but sometimes it’s more important than money, like our environment, and our viability on this planet. He would like to deny climate change exists (and trust me, we would all prefer that global warming not exist either), but global warming is real, backed by science and research. It isn’t a theory. It is hurting our environment and hurting us. Trump has said publically and openly and again as part of his contract, that he will cancel payments to the UN Climate Change Programs and use the money to fix America’s water and environmental structure. Without the US buy in to the Paris Climate Accords, the agreements put in place will be unenforceable. His solution is to use the money to fix US water and environmental structure. Again, while I am all for fixing infrastructure, this is not a substitute. Climate change and toxic environmental exposures are not a local problem with local solutions. They are a global issue. This may be the most lasting legacy of the Trump administration. Whether you believe environmental exposures cause autism, or that they contribute, toxic environmental exposures harm human health.   Environmental toxins have been linked to everything from asthma, diabetes, yes autism (in conjunction with genetic factors), and in fact SOME disabilities are reduced with mitigation of environmental exposures.   Climate change is real – it has been scientifically proven. It is not a hoax made up by the Chinese. It will affect the air and water quality for not just future generations but THIS generation. Scientists have documented what will happen if the Paris Climate Accords are not instituted. What is even more troubling is that he is going to eliminate the federal department (EPA) that regulates toxic chemicals and their use.  I think he sees it as a waste of government time and effort and money.  So there really will be no checks and balances for US or foreign industry for how much chemicals they release or produce or test for safety. This is an incredibly sobering thought and we all hope he takes a breath and slows down and really thinks about the consequences of these things.

And now to the conclusion and the elephant in the room. Trump openly mocked a reporter with a disability. Whether you’ve watched some weak bizarre youtube video on a site called “catholics4trump” of the rebuttal of his actions or not, he did. Nobody listening to this podcast is dumb. He did, and it is clear that he does not see the rights of the disabled and the needs of their families as primary issues.   If you voted for Trump you voted for trump for reasons OTHER than he has the disability community in mind.

I hope everyone listening has had a chance to take a deep breath and as my friend David Mandell put it:  “Whatever you care about – alleviating poverty, ending hunger and sickness, loving the stranger in our midst, protecting the dignity and rights of those with disabilities or who are just different from us, ending racism, misogyny and sexism, seeing to the proper education of our children, guaranteeing the rights of our LGBT brothers and sisters – whatever it is, double down. Volunteer more, give more money, protest, educate others.” My addition is:  become more determined than you were before. There is good work to do, and we still can do it. Thanks David, and thanks to all of you for caring, no matter who you voted for.

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