The MacArthur Amendment And Healthcare

Chrisa Hickey

On April 20, 2017, it was announced that an amendment to the American Health Care Act (AHCA) was being proposed. The amendment was authored by Congressman Tom MacArthur (R-NJ). On April 25, 2017, the full language of the amendment was released. You can read it here.

It’s not great.  It gives the states the ability to strip away all the gains in mental health parity that were guaranteed under the Affordable Care Act (ACA).  Here’s two reasons why you need to call your congressperson now and tell them that the MacArthur Amendment must be stopped:

State Waivers

The new language allows states to apply for waivers of the Essential Health Benefits clause of ACA, in order to reduce premium costs.  Before the ACA, mental healthcare was NOT required to be covered by any insurance policy, including state Medicaid.  The MacArthur Amendment would allow states again to remove mental healthcare from policies to save money. By the way – it could remove women’s health benefits too, like prenatal and other OB care.

Health Status Underwriting Waivers

This language would allow states to take high risk people – read, folks with pre-existing conditions – and put them into a high risk pool where premiums for anyone with a pre-existing condition could skyrocket. This waiver would remove the clause in ACA that prohibits insurance companies from charging folks with pre-existing conditions more. So, yet again, a chronic medical condition could bankrupt you.

Call your congressperson – click here to find out his or her number.  Be polite, but tell them – My child has a serious mental illness that requires lifetime treatment. The MacArthur amendment would allow my state to take away my child’s mental healthcare, or increase premiums for this pre-existing condition to the point where we could not afford his or her treatment. Please vote NO on the American Health Care Act and the MacArthur Amendment. Calling works better than letters.

“Frustration” by Jason Bolonski is licensed under CC BY 2.0

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ME Versus Me

Chrisa Hickey

I went to the third annual HealthEVoices Online Advocacy conference this past weekend.  I learned a lot that I want to share with you over the coming weeks. But probably the most important thing I learned is that I don’t have to be everything to everyone, all of the time. I love the advocacy work I do. I love helping parents just starting down this horrific road not have to navigate the same disasters that we had to navigate. I love getting big companies to stop doing things that perpetuate stigma.

I want to do more of those things. But I get mired down in having to “friend” everyone on Facebook, answer every email and messenger request, and respond to every tweet. And, frankly, being “on” all of the time is really wearing.  I end up burnt out and not doing the things I really love, like working directly with parents and writing my blog and other articles.

So, I’m going to stop.

I’m not going to accept friend requests on Facebook from advocates I haven’t met. I’m going to let some comments and trolls go by on Twitter.

And them I’m going to do.

I’m going to write more. I’m going to finish that goddamned book. I’m going to attend more IEP meetings with frightened and confused parents.

I hope you’re ok with that.

I hope you’ll do the same.  Tell me how you will change up what you do to care for yourself better.

“Relax” by Scott Leslie is licensed under CC BY 2.0

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fearfutureparentingPresident Trump

How Do I Trump Fear?

Chrisa Hickey

I have been trying to explain to friends, family, and others why I, a middle-aged, middle-class white woman, am afraid of what the next four years holds now that Donald Trump is our President Elect.  I keep reading comments like, “we will have to wait and see what happens,” or “we will all be okay.”  Sorry – screw that.  I will not sit back and just wait and see what happens.  Because of Donald Trump, things are already happening that are dangerous.  Things have already been proposed that will impact the quality of life and potentially harm the lives of those that I love.

My fear has nothing to do with his crass language. I’m not afraid for myself.  I’m afraid for my children,  Tim and The Girl in particular.

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Victory! Cedar Fair closes FearVR Ride

Chrisa Hickey

After our calls and emails to Knott’s Berry Farm and Hollow Studios, the online petition, and posts, articles, and letters from the Orange County chapter of NAMI, Pete Earley, Ron Thomas, and Los Angeles Times writer Steve Lopez, Cedar Fair Entertainment, the parent company of Knott’s Berry Farm, California’s Great America, and Canada’s Wonderland Park have closed the FearVR attraction in all three parks!

Ron Thomas, father of Kelly Thomas, shared this email he received from Knott’s Berry Farm last night:

Knott’s Berry Farm is proud of its popular annual Southern California Halloween event, Knott’s Scary Farm. For more than 40 years we have delivered unique and immersive haunted experiences to our fans and loyal guests. Our evening attractions are designed to be edgy, and are aimed at an adult-only audience. Over the past week we have heard from a number of people expressing their concern that one of our temporary, Halloween attractions – FearVR – is hurtful to those who suffer from mental illnesses . Contrary to some traditional and social media accounts, the attraction’s story and presentation were never intended to portray mental illness. As it is impossible to address both concerns and misconceptions in the Halloween time frame, at this time we have decided to close the attraction”.

Best Regards,

Public Relations | Marketing
8039 Beach Boulevard, Buena Park CA 90620
Office (714) 220.5130 | Fax (714) 220.5124


Steve Lopez of the LA Times is the reporter that wrote the book that became the movie The Soloist, about Nathanial Ayers, the amazing classical violinist he met on the streets of Los Angeles after Ayers developed schizophrenia. Let’s not forget what Steve wrote in his article  about the ride (linked above):

But another line in the email made me wonder if Knott’s was taking blame or pointing a finger: 

They knew it was about a mental institution.  As Ron Thomas was quoted in the same article, “if it waddles and quacks…”

Call me cynical, but now, we need to KEEP it closed. I fear that, after the fervor dies down now, they will quietly re-open the attraction.  I will keep an eye out for that.

In the meantime, please contact Knott’s Berry Farm and Cedar Fair Entertainment and thank them for closing the ride.

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Stigma is Alive and Well at Knott’s Scary Farm

Chrisa Hickey2 comments

Knott’s Berry Farm is an amusement park in Orange County, California.  I’ve been there several times, as a child and as an adult with my kids, including Tim.  Every October they turn the park into Knott’s Scary Farm, decked out in all the finest in Halloween regalia.

This year, they announced a new virtual reality experience they have titled FearVR: 5150. From their own website, here’s the description:

Enter the Meadowbrook Institute and witness the abnormal case of a terrifyingly unusual patient named Katie…Disturbingly vivid sights and sounds invade all of your senses. Encounter the darkness that has taken over the medical staff during your fully immersive hospital stay.

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Angie’s Story – Parents Like Us Club

Chrisa Hickey2 comments

Just over two years ago I was gloriously naive. Before the police knocked on my door the morning of May 31st, 2014, there was a lot I didn’t know.

I didn’t know my daughter had a serious mental illness. Morgan had always been a quirky child. Extremely intelligent and intensely creative, people often said that she “marched to the beat of her own drum.” Although (in retrospect) there were a few red flags over the years, we were continuously reassured by her doctors and educators that Morgan was well “within the range of normal.”

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Four Reasons Why Fighting Stigma Is Important

Chrisa Hickey1 comment

There is some sentiment among advocates for persons with serious mental illnesses like schizophrenia and bipolar disorder that movements like Mental Health Awareness Month and fighting stigma is a waste of resources because it doesn’t help get treatment and resources to the most severely mentally ill. I disagree. I think awareness and stigma fighting are an important component in getting those people the services they desperately need.  I have four reasons why.

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Heathe Voices 2016 – Deeply Rooted Connections

Chrisa Hickey

Last year I wrote a post about attending Healthe Voices 2015 in Jersey City. It was an amazing new event hosted by Janssen Pharmaceutical and Everyday Health that brought together 60 online advocates across many different conditions to help us strengthen our advocacy work.

This year, I was honored to be asked to be on the Advisory Panel to help create Healthe Voices 2016. I, along with seven other amazing health advocates, worked with Janssen to put together the program for this year’s conference. On April 15, 2016, nearly 100 online advocates came together in my hometown of Chicago.

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