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Some of the Possible changes to the Affordable Care Act that will hurt the Autism Communities

24 Feb

One of the major goals of the new American government is the “repeal and replacement” of the Affordable Care Act (also known as ObamaCare). So far we haven’t seen a clear idea of what “replace” will mean. Some features of the ACA have been very helpful to our communities: helping more people obtain healthcare insurance and eliminating the ability of insurance companies to deny coverage based on pre-existing conditions, to name but two.

NPR.org has an article that goes into some other questions about what could change:

GOP Considers Trimming Health Law’s 10 Essential Benefits

Here are a few points that stand out:

Habilitative services

The law requires that plans cover “rehabilitative and habilitative services and devices.” Many employer plans don’t include habilitative services, which help people with developmental disabilities such as cerebral palsy or autism maintain, learn or improve their functional skills, via speech or occupational therapy or other support services. Federal officials issued a regulation that defined habilitative services and directed plans to set separate limits for the number of covered visits for rehabilitative and habilitative services. Those rules could be changed.

“There is real room for weakening the requirements” for habilitative services, says Dania Palanker, an attorney and assistant research professor at Georgetown University’s Center on Health Insurance Reforms, who has reviewed the essential health benefits coverage requirements.

Occupational therapy and speech therapy are very common, especially among very young autistics.

Mental health and substance use disorder services

The health law requires all individual and small group plans to cover mental health services and treatments for substance use disorders. In the regulations, the Obama administration said that means those services have to be provided at “parity” with medical and surgical services, meaning plans can’t be more restrictive with one type of coverage than the other regarding cost sharing, treatment and care management.

“They could back off of parity,” Palanker says.

Mental health parity is how other therapies for autism, including ABA, are funded.

Medicaid expansion is also a big target. Medicaid expansion is how health insurance was delivered to many people who could not afford it before.

Fewer people will be insured going forward. The position of at least one Republican (speaking today at CPAC) is that is a good thing. That means more people have exercised their choice. Unfortunately, that’s not the way things work for those in the disability community, where many are under- and un-employed. We are talking about people whose choice is to have healthcare insurance and who may not after the overhaul of the Affordable Care Act.

As an aside–medicaid also provides a lot of funding for services for people with disabilities. The government currently has committed to pay a set share of the costs of these services. There are plans to “block grant” medicaid, which is a way to limit the amount the government pays. If implemented this will reduce the quality of life for people with disabilities a great deal.

There are major changes possible that could affect people with disabilities. This is the time for parents of those who can not self-advocate to step up and be advocates. This is the time for self-advocates to self advocate.


By Matt Carey

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ARC/UCP Action Alert: Act Now to Save Medi-Cal

23 Feb

Changes planned and proposed by the new government could significantly reduce the support for people with disabilities.

The time to act is now. Below is an email sent out by The Arc & United Cerebral Palsy California Collaboration. It is California focused but–you can do this from whatever state you are in. Call your Senators. Call your member of Congress. Let them know: they should vote NO on ALL medicaid cuts.

Act Now to Save Medi-Cal

Dear Developmental Disability Community Friends,

Adults with intellectual and other developmental disabilities overwhelmingly rely on Medicaid (called Medi-Cal in California) for their health coverage.

But that coverage is under serious, major attack in Congress. There are those who want to roll back the 2010 expansion of Medicaid coverage, which was part of the Affordable Care Act, and even cut back coverage that our community had before that.

One plan would give states fixed amounts of money (called ”block grants”) for Medicaid, meaning the state would have to try to find other money to cover the shortfall when the needs exceed the block grants. I think you know what a tough fight it is to get California’s legislature and governor to fund our community’s needs. If the federal block grant falls short and the state doesn’t fill the gap, it would mean people would go without health care.

Another plan would give states a fixed amount per patient, no matter how much care the patient needs. This is called “per-capita allocation.” Again, if the fixed amount falls short and the state doesn’t come up with the money to cover it, it would mean people would go without health care.

There are also plans to impose co-pays and deductibles and Medicaid patients, some of the poorest people in the country. And you can be sure that more bad ideas will surface before we’re done with this fight.

There are lots of people complaining about a lot of things to their U.S. senators and congressional representatives right now. We need to make sure our community’s voice isn’t drowned out.

Here are two things you can do right now:

1. Call Senator Dianne Feinstein, Senator Kamala Harris, and your own congressional representative. Click here to find their numbers and get some suggestions on what to say to them.

2. If your representative is having any public events, get some friends and go to them — and be prepared to talk. Again, identify yourself as part of the developmental disability community. If they are planning to vote NO on ALL Medicaid cuts, thank them. Sometimes we don’t thank our supporters enough. If not, ask them pointedly why not. Sometimes we don’t criticize our non-supporters enough, either.

As someone who worked for state legislators for a long time and got those calls and attended those public events, I can tell you that they sure do get a politician’s attention, alright.

I hesitate to direct you to this link because it’s highly partisan, and our community spans the whole political spectrum. But the tactics it suggests can work no matter where on that spectrum you are. In fact, it’s written by a bunch of Democrats who are copying the Tea Party. Please don’t think we support or oppose this group’s political agenda, because we don’t. But if you are moved to do more than the two steps I’m asking you take now, reading this is a good place to start.

Thank you for your advocacy.

Greg

P.S. One more thing. Please forward this Action Alert to everyone you know in our community. Now’s the time for all of us to get riled up.

Greg deGiere
Public Policy Director
The Arc & United Cerebral Palsy California Collaboration
1225 Eighth Street, Suite 350, Sacramento, CA 95814
916-52-6619

Betsy DeVos, a potential disaster for the autism community

30 Jan

President Trump’s nominee for Secretary of Education is a woman by the name of Betsy DeVos. Ms. Devos has long been an advocate for alternatives to public education. She’s pushed voucher programs and charter schools. Both programs have generally left students with disabilities behind.

Here is one of the videos from Ms. DeVos’ hearing before the Senate HELP Committee. This one doesn’t even catch some of her more embarrassing statements.

If you watch this video, you will see that Ms. DeVos routinely refuses to answer important and direct questions. Would she enforce Federal law? Well, she didn’t even understand that the IDEA (Individuals with Disabilities Education Act) was Federal law. In many programs where students are offered vouchers, disabled students have to waive their rights under IDEA. Ms. DeVos was asked if she would support students being able to keep their rights–and she refuses repeatedly to answer.

There are a few catch phrases you will hear from her that basically amount to “I don’t know what I’m talking about but I don’t want to admit it.” When asked about IDEA she responded repeatedly that these decisions “should be left to the states”.

People often dodge these sorts of questions when they know their answers will be criticized (think of Trump’s “I can’t release my tax returns because I’m being audited” claim. It wasn’t true and now he’s confirmed that he has no intention of releasing them.).

I don’t have the time to go into more details, but she would be a major disaster for the disability community–obviously especially those still in school. Please look into this. If you decide, like I have, that she is not an education secretary who would benefit our kids, act. Call your representatives. Ask them to not approve her. It can make a difference. Here’s one example:

Keep Calling Your Representatives; It’s Working
Thanks to over 1,000 phone calls from concerned constituents, Sen. Heidi Heitkamp announced she would not vote to confirm Betsy DeVos.

Search news sites for discussions of Betsy DeVos. Find your Senator’s phone number and call. Make your voice heard.

I can’t make a comprehensive list of articles but here are two:

Here is a recent article:
Progressives launch last-minute push against Betsy DeVos, and conservatives counter with online ad campaign

And another:
What’s the worst that could happen with Betsy DeVos as education secretary? Two scenarios.

If you thought Donald Trump might have any priority for disability issues, think again

25 Jan

Right after Donald Trump was sworn in as president the website for the White House was drastically changed. While news stories focused on topics like climate change, much less attention was given to the fact that pages on disability issues also disappeared. Disability Scoop discusses this as Disability References Removed From White House Website.

Where Hillary Clinton had a focus on disability issues (she reached out to the disability community and had an actual disability platform), candidate Trump had no such focus. One of the memorable moments from Mr. Trump’s campaign was where he mocked a disabled reporter, but failed to show the integrity of admitting his disrespect when called on it.

There is a Trump apologist argument that says Mr. Trump wasn’t mocking the reporter. As one such apologist put it, Mr. Trump was just “doing a standard retard” (insulting and disrespectful, but that’s exactly what she said). I would welcome video of Mr. Trump making the same motions while mocking someone else.

Disability issues will likely not be a priority for this administration. Frankly, be prepared to see funding cuts and, at best, indifference from Mr. Trump.


By Matt Carey

Donald Trump believes that “the education is flush with cash”. How did he get that “alternative fact”?

23 Jan

Donald Trump was inaugurated last Friday. His speech was overall very poor, but one statement stood out to me above all the others. A statement which is not getting much (if any) press:

But for too many of our citizens, a different reality exists: mothers and children trapped in poverty in our inner cities; rusted out factories scattered like tombstones across the landscape of our nation; an education system flush with cash, but which leaves our young and beautiful students deprived of all knowledge; and the crime and the gangs and the drugs that have stolen too many lives and robbed our country of so much unrealized potential.

Emphasis added.

I don’t think anyone who actually deals with the education system in America would consider it “flush with cash”. That said, no one involved in special education would every say such a clearly false statement.

We absolutely are not serving our students, but this is because our education system is woefully underfunded. My own district cut back on many school days a few years ago when California cut the funding sent to districts. Guess what, when funding returned, the district didn’t restore the days we lost. We have about 10 education days fewer than before the budget crunch.

And that’s just in general. Special Education, since the first law in the 1970’s, was supposed to come with 40% of the costs covered by the Federal Government. OK, they said a “maximum” of 40%, but the Federal government has never come close. Estimates are that the contribution is about 17%.

These are the disabled children of our country. Does “America First” mean, “non disabled American’s first”, Mr Trump? Or will you be the one who finally corrects this injustice? That’s going to be hard to do if you think that schools are “flush with cash”.

You’ve come down from your tower to live in a mansion. One walled off from the world. And you surround yourself with people who, like you, don’t understand the experiences of the majority of Americans. And when you make statements like “flush with cash”, it shows.

I’ll be honest, one disappointment with Mr. Obama’s administration was his failure to live up to America’s commitment to people with disabilities, including funding Special Education. How about you prove you can do better than Mr. Obama–don’t tell us that school systems are “flush with cash”, make them flush with cash.


By Matt Carey

Bernie Marcus was one of Trump’s biggest supporters. Will that help the autism communities?

11 Nov

Even though Donald Trump reports that he’s very wealthy, he did take in a lot of money to to support his presidential campaign. I checked who the large donors were to the Trump campaign and was surprised to see that one of the top donors was the Marcus Foundation. That appears to be Bernie Marcus, founder of Home Depot. He came out a while back in vocal support of Donald Trump (Why I Stand With Donald Trump).

Bernie Marcus also founded the Marcus Autism Center, and if memory serves, jump-started Autism Speaks with about $25M.

Now I am not a supporter of Donald Trump. In fact, I believe Mr. Trump is quite bad for the autism communities. Given that, I have this hope that as a big donor, Mr. Marcus might get some time with Mr. Trump and might be able to advise him on a few topics.

For instance, Mr. Trump once suggested that radio show host Michael Savage should head the National Institutes of Health. Mr. Savage is on record as saying:

In 2008, he said nearly every autistic kid was “a brat who hasn’t been told to cut the act out” and said “there is no definitive medical diagnosis for autism.”

One guesses that Mr. Trump wasn’t serious but was trolling for publicity. But, just in case, someone should tell Mr. Trump that Mr. Savage is a rather poor choice for NIH head. I mean, really, it’s a $31B concern. Not something you pass off to a guy with no experience, no understanding of medicine and research, and who tells callers to “get AIDS and die”.

If memory serves, the Autism CARES act comes up for renewal towards the end of the Trump presidency. As someone who has supported funding for autism research, perhaps Mr. Marcus could put in a good word with Mr. Trump.

Perhaps we should just step back a bit and ask that perhaps someone could suggest to Mr. Trump that having a policy on disability–any policy–might be a worthwhile thing to consider?

Reading Mr. Marcus’ statements of support for Mr. Trump, it appears that he takes issue with the Affordable Care Act. Perhaps Mr. Marcus could explain to Mr. Trump that many autistics and autism parents rely on this new insurance structure in the U.S., and they can’t afford medical health savings accounts. That any restructuring should take the needs of our most vulnerable into account.

A while back Mr. Trump tweeted that he believes in the failed idea that autism is caused by vaccines. Mr. Marcus, who actually had access to real researchers on the topic, has stated:

“Everything that comes back is the same,” he said. “They cannot find any connection between immunization and autism.”

People are going so far as to claim that Trump took time out of his busy campaign schedule to sit down and talk with none other than Andrew Wakefield. Perhaps Mr. Marcus could talk to Mr. Trump, one billionaire to another, about just how much weight to give to Mr. Wakefield (in case you are wondering–the answer is none. Give him no weight).

Sorry to end on that whole Andrew Wakefield thing. Wakefield is a sideshow act in the autism story. Heck, he’s the understudy to the sideshow. But, he’s also a sideshow that has caused more damage to the autism communities than anyone in recent memory.

Mr. Trump has built his image as someone who shoots from the hip and believes his instincts. Perhaps Mr. Marcus could step in and offer some guidance to Mr. Trump’s instincts. As least as far as autism is concerned.


By Matt Carey

Donald Trump in language some autism parents will understand: Train Wreck

8 Nov

I should stop being surprised by my fellow autism parents–those who still cling to the idea that autism is a “vaccine epidemic”. I shouldn’t be surprised that they support Donald Trump. Trump has said he believes the failed vaccine-causation idea. So what if he’d be horrible for the future of our community, Trump says what those parents want to hear.

So, let’s just put this in language those parents will understand:

Donald Trump is a Train Wreck.

“Train Wreck” was a common phrase used to describe autistics 10 years ago. Perhaps the most prominent voice was a guy named Rick Rollens, autism parent and believer in the idea that vaccines cause autism. When people talked about the fact that many autistics are undiagnosed, Rollens responded “Missing child with autism is like missing a train wreck”. Thank you Kathleen Seidel for getting Rollens to stop that.

Now back to Donald Trump: missing the fact that he would be terrible president is like missing a train wreck. Let’s leave out the fact for now that he’s proved himself to be completely unfit for the main duties the president would take on with his childish outbursts and lack of self control, let’s just consider this fact:

He has no disability policy. Further, we can expect nothing from him. He has shown himself to be an arrogant ableist; a man who mocks the disabled.

Trump has no backbone. No guts. It takes guts to admit a mistake and apologize. Trump never will. Sounds a lot (LOT) like the proponents of the idea that vaccines cause autism (looking at you, Andrew Wakefield). When called out for his attack on a disabled reporter, Trump responded that the reporter should apologize (no, seriously, he did!), and further stated:

Mr. Trump stated, “Serge Kovaleski must think a lot of himself if he thinks I remember him from decades ago – if I ever met him at all, which I doubt I did. He should stop using his disability to grandstand and get back to reporting for a paper that is rapidly going down the tubes.”

That press release on Trump demanding an apology was one of the 10–ten!–hits on his website for the search term “disability”. None of those hits are relevant to a better life for my kid.

This is the guy you “vaccines-cause-autism” people want making policies on disability?

Contrast this with Hillary Clinton. 336 hits for “disability” on her website. She’s actively campaigned on disability issues.

But, hey, Trump says you aren’t chasing a failed idea on vaccines. So promote him. Trash your kids’ futures for a chance to hear someone important say, “I, a person who ignores science, facts and anything else I disagree with, think vaccines cause autism. Who needs research when I have twitter?”

I know the “vaccines-cause-autism” groups shy away from the word “acceptance”. We live in a world where acceptance has already dramatically changed the lives of people with disabilities. Want to go back to a world where you can’t send your kid to school? Because Special Education came about due to acceptance: accepting that people with disabilities have rights. Want to go back to a world where you parents can’t take your kid in public? Where stores and restaurants can deny you service because you have a disabled kid with you? Where adult housing means “so you didn’t institutionalize your kid when they were young, so now you can pick one”?

Progress will be made by people who accept people with disabilities. Progress will be lost when people who don’t accept people with disabilities make the choices.

Who is Donald Trump if not a man who has made “othering” a principle part of his campaign? Othering is when you treat another person or group based on how they are different than you, rather than on your common humanity.

Trump’s immigration policy? Othering.

Trump’s policy towards minorities? Othering.

Trump’s plan to roll back marriage equality? Othering.

But, let’s accept that so we can have someone say, “ignore data. Ignore facts. Vaccines cause autism.”

Let’s vote someone in who would gut access to health insurance for many in our community. Everyone has risks of serious medical conditions. Autistics even more so. Heck, that’s one of the “vaccines-cause-autism” community’s favorite talking points. The Affordable Care Act gave access to medical insurance to millions of people who didn’t have it–and that includes many, many autistics.

But let’s take that away. Let’s go with Trump’s plan for medical health savings accounts. A plan that basically says, “do you have enough money to play for medical expenses? Great, here’s a tax break for you.”

Does that sound like an insurance program friendly to people with disabilities? Here, let me answer that for you: NO!

Donald Trump is a train wreck for the disability community. The fact that we have autism parents supporting him is just another example of how the failed vaccine idea has turned many potentially useful advocates down a fruitless and destructive path.

I am so glad this election is almost over. But the serious problems we have as a country will remain, including a vocal contingent of autism parents who will take us to self-destrcution in their one-(failed)-issue voting.

Matt Carey