Tuesday, November 01, 2011

When what is covered demonstrates flawed values…

I just read this piece in the St. Louis Post-Dispatch and it has me all fired up on a Tuesday, y’all!

Let’s jump right on in, shall we?

Longtime readers know that my sister and I are co-guardians of our older brother. Our brother is autistic and aphasic. He does not speak in sentences…has a vocabulary of less than 100 words…but can communicate better through sign language.

I grew up in a house with too much going on for our parents to bother shielding us from reality.

I knew that my brother’s behavior and speech therapy cost a lot of money. My brother is 41 now and when he was a child the options were far more limited than they are now, but my parents worked tirelessly to provide him access to whatever was available. 

And I knew it…felt it…saw in on my father’s face when he sat down to do the bills or went to work at a job that he found little fulfillment in just because it paid him a high salary.

Our entire family worked as a team when it came to speech therapy and behavior therapy. And we shared in my brother’s triumphs and setbacks.

My brother worked his ass off. He went to school year ‘round and then came home to a never-ending series of exercises. Every event, every meal, every interaction was laced with training or skill building or corrections. Trust that I doubt I could have been as strong as he was or half as successful.

We all enjoy the benefits of my brother’s efforts. He is a fantabulous man who is eager to communicate and share his opinions. We’ve found a system and honor his use of sign language rather than push for more verbal communication.

Pause…sip coffee…continue.

When autism insurance reform gained momentum in Missouri, I supported the hell out of it even though it would not apply to my brother. 

I know, better than most, just how expensive education and therapy can be…and just how amazing the outcomes can be when families have access.

Autism insurance reform was needed because insurance companies refused to cover needed treatments and families who had paid premiums for years were getting hustled on the back end when they needed services.

When autism insurance reform passed I cheered…for the families and children it will benefit and in honor of my parents who would have been all over that fight.

Now it looks like some institutions that like to talk the talk of caring for children with developmental disabilities and/or communication challenges are being outed for not walking the walk when it comes to providing coverage for the services that actually demonstrate caring for children with developmental disabilities and/or communication disorders.

Insurance by Christian Brothers Employee Benefit Trust, which comes from Christian Brothers Services (a nonprofit Catholic organization), does not offer coverage for autism treatment services.

And they don’t have to.

Because they are…wait for it…a church plan.

Yep…they are a church-based whatever that is a non-profit and thus exempt.

As detailed in the St. Louis Post-Dispatch piece, when a local St. Louis family tried to get autism treatment services covered they were denied. The child in question has Downs Syndrome and is autistic. The mother was directed to read her insurance certificate, which read…

"The Christian Brothers Employee Benefit Trust is a 'church plan' as designated by the Internal Revenue Service and Department of Labor. It is not a group insurance contract within the meaning of state group insurance laws. Therefore, the Christian Brothers Employee Benefit Trust is not subject to the mandated benefit requirements imposed by state group insurance laws."

Pause…allow that bullshit to marinate…continue.

Now you know and I know that you know that I know that clause is one hell of a get out of providing all manner of services shit.

Usually, Catholic services make the news for not providing reproductive health care like emergency contraception to rape survivors or tubal ligation or abortion care to save a woman’s life or…well, you get the picture.

With this latest public display of callous disregard, they are showing their cards a bit.

And the smell of hypocrisy is ripe as hell.

Despite the rhetoric from the right that claims otherwise, one of the reasons many families fear having a child with developmental disabilities is because they don’t think they will be able to afford the care that child would need. Nothing can be more gut wrenching than knowing a child needs something…and, damn it, we are talking about “need” here not want…knowing there is a need that you simply cannot meet.

I’ve seen that look…felt that fear…known that something was going to have to give so something needed could get done.  And my family was blessed to be in a position to even consider most of the services my brother had.

But far be it for Missourians to expect a religious institution that benefits from non-profit status under the guise of providing care to the community to actually provide care to the community.

That’d be too much like right.


In this as in so many things, the wrong is never limited to reproductive healthcare…it may start there or get media attention there, but the theme of public rhetoric and private rancidity never ends there.

Mayhap the family featured in the article will find relief in the federal healthcare insurance reform they probably opposed for fear that it would provide coverage for abortion services that it can’t because of Hyde?



Bridget Bufford said...

Sad. That is a sorry situation. The father works in a school, yet can't get necessary services for his own child.

Anonymous said...

Send round a priest. They really know how to take care of vulnerable children.

TRoyal said...

That choice, of choosing to support federal healthcare reform that would provide for their child when they were probably against it for the abortion services coverage, will be a hard one, but I would wager that, when faced with a personal choice and one that affects them, they'll choose what benefits them rather than makes life tougher on others. Some "Well, I don't like what it does for other people, but this is what WE need."

/run on sentence

Kathryn Bjornstad-Kelly said...

It's kind of appropriate you wrote about this issue today, since today is Autistics Speaking Day. By any chance, would you be okay with me adding this post to our list of autism-related blog posts for today? It's mostly autistic people doing the writing along with some allies, but I think people could benefit from hearing your voice as well.

JoyMama said...

Well, maybe they'll find relief in the national reforms. Or maybe autism coverage won't end up as part of the minimum benefits for plans on the health insurance exchanges, and then "If states mandate a benefit, but it isn’t on the federal list, the states would be responsible for the cost of the coverage." And watch just how fast the autism insurance mandates start getting repealed...

See above link for more. It's not just autism insurance that's at play, it's each and every insurance mandate from each and every state. Of course, some are more at risk than others I'm sure.

Shark-Fu said...


Please add it if you think it would be useful. I certainly don't want to step into a space for people with autism...but if you think it is okay feel free to post.

Esteleth said...

Can't say I'm surprised.
I'm on the autistic spectrum (on the high-functioning end), as are many, many relatives, including some that are profoundly affected.
The stories I could tell you about trying to afford this and get access to that therapy! Hooboy.

And yet! When I start a new job and look at the "mental health" section of the insurance very very carefully and ask pointed questions I'm "paranoid" and "being silly."

Of course, I've ALSO been told by Big Well-Known Insurance Company that, due to the family history, "it's probably genetic" (...ya think?) and they have a policy on genetic disorders. Which is to say, deny at all costs. Hooray!

Kathryn Bjornstad-Kelly said...

I posted a link on my blog. Thanks for letting me share. The fact that you're concerned about spaces for autistic people says that you're a good ally. I started reading your blog because of your feminist views but I've also really enjoyed your posts about the difficulty in getting support for autistic people. It's a problem that a lot of people ignore, and people with autism are often left without the support and services they need.

Jay said...

Insurance companies like to cover their backs so to speak so that does not surprise me at all about their policies.

On the bright side your brother sounds like he turned into a great guy and probably mentally strong from everything he went through.

Great post you write well!

Wayne Rohde said...

This is a tragic situation.

But the church plan is a self insured plan, therefore governed by the laws of ERISA, federal act.

Missouri's autism law deals with state regulated insurance plans.

ERISA plans cover an estimated 55% of the population (self insured, federal employees, etc).

Your Congressman and US Senators need to hear from you.

rashedkhanbd11 said...

Assets are placed in a trust fund, legally distinct from the union and the employers, for the sole, and exclusive benefit of the employees and their families
GO here

The Gumdrop Stage of Grief ...

So many of you have shared condolences and support after the death of my beloved brother Bill from COVID-19. I wish I could thank you indiv...