Tag Archives: advocacy

Family Excluded From Pool Membership Because Autistic Son Requires Flotation Vest

“If we make an exception for one, we would have to make exception for all.”

Photo courtesy of ellingtonridge.org

June 27, 2013  [Updated June 28, 2013 6:50am]

Ellington, CT –  An exclusive country club in the suburbs of Connecticut excluded a family from becoming members because their autistic son would require a flotation vest while swimming in the pool.  With recent headlines of autistic children drowning rather frequently, one would think that a flotation vest would be a fabulous idea.  It seems it would be a much grander idea than outright discrimination of a person with disability and that person’s entire family.

However, when Mrs. Cristin Millen, a seventh grade Language Arts teacher in Ellington arrived at the Ellington Ridge Country Club to begin the membership process it never occurred to her that her son’s autism would exclude them from enjoying the same privileges other residents in the area enjoyed as members.  She left without being given an application but was told someone would get back to her.

“I almost didn’t say anything about his autism at all because I assumed it wouldn’t possibly be an issue,” said Millen.  “But when I became aware that the club had a rule banning flotation devices from the pool, I mentioned that I have a son with autism who is verbal, follows directions, and is a good swimmer.  I explained that we would be in the pool with him the entire time and that the vest was really just for peace of mind as he has always worn one.”

Ellington Ridge took Mrs. Millen’s request for exception under consideration for less than 48 hours before responding with a denial of membership.  Mrs. Millen was told that if an exception was made for one, an exception would have to be made for all, and that was not possible.

This country club is a private facility, which means that ordinarily the club owners and members could do whatever they please, invite whomever they choose to join, you get the idea.  But under the Americans with Disabilities Act (ADA), any private club that opens its doors to the public at any time, waives that right.  The Ellington Ridge Country Club offers to open its doors for banquets, weddings, business meetings, fundraisers, and birthday parties.

Wait a minute…

Can you imagine?

Can you imagine if someone like ME thought to plan my autistic daughter’s birthday party at a beautiful venue such as Ellington Ridge Country Club, put down a chunky deposit, invited ten or so other Flaptastic kiddos and their parental units? What would happen when all of us showed up at the pool with our vests and inflatable wings? Would we all be tossed to the curb?

Can you imagine?

Can you imagine, Ellington Ridge?

Excluded Flotation Vest and the Handsome Child Who Wears It

Excluded Flotation Vest and the Handsome Child Who Wears It

UPDATE: Friday, June 28, 2013 6:50am – Local media reached out to the ERCC yesterday afternoon for comment.  Management quickly asserted that Mrs. Millen never filled out the application, so therefore the club was unable to review her family’s request.  However, in WFSB’s on air coverage last evening, management admitted that Mrs. Millen was not given an application during the miscommunication throughout the week but that ERCC would happily accept the family’s application with waiver for the vest.  In an email communication from management to Mrs. Millen last evening the same offer was made but included a timeline in which the Millen Family was advised it would take until mid-July before their application with waiver to accommodate their son’s need for a Coast Guard approved flotation vest could be approved by the Board of Directors of the Ellington Ridge Country Club.

LINK to WFSB News Coverage > CLICK HERE.

 

WHAT DO YOU THINK??? COMMENT BELOW…

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Manchester Schools Refuse to Maintain Transportation Monitor. Oh. And Chicken Bones.

If you haven’t been around for the fun, please read THIS, THIS, and THIS.

Cheers.


Behind Closed Doors

These are the Members of the Senate Armed Services Subcommittee on Personnel.

These are the people who decide behind closed doors whether or not to accept an amendment similar to the one we passed last week in the House that will give our children the autism treatments we have been waiting for.

Behind closed doors.  When no one is watching.

These are the people standing between your child and my child getting the medical treatment for autism they need and deserve.

What will you do about it?

My suggestion is that you speak up and tell every single one of these legislators about YOU.  Tell them about YOUR family.  Because they are never going to change their minds unless you change it for them.

You are contacting them regarding “Senator Gillibrand’s amendment, a measure to make autism treatments available to all Department of Defense dependents whether active duty or retired, lifting the dollar cap on care.”

Be honest.  Be respectful.  Get it done.

Tell them WHY we need their support.  No one person can get us over the goal line.

It truly is YOUR turn.

What will you do behind closed doors to change the world?

Webb, Jim – (D – VA) (202) 224-4024
248 RUSSELL SENATE OFFICE BUILDING
WASHINGTON DC 20510
Lieberman, Joseph I. – (ID – CT) (202) 224-4041
706 HART SENATE OFFICE BUILDING
WASHINGTON DC 20510
Akaka, Daniel K. – (D – HI) (202) 224-6361
141 HART SENATE OFFICE BUILDING
WASHINGTON DC 20510
McCaskill, Claire – (D – MO) (202) 224-6154
506 HART SENATE OFFICE BUILDING
WASHINGTON DC 20510
Hagan, Kay R. – (D – NC) (202) 224-6342
521 DIRKSEN SENATE OFFICE BUILDING
WASHINGTON DC 20510

Begich, Mark – (D – AK) (202) 224-3004
111 RUSSELL SENATE OFFICE BUILDING
WASHINGTON DC 20510
Blumenthal, Richard – (D – CT) (202) 224-2823
702 HART SENATE OFFICE BUILDING
WASHINGTON DC 20510
Graham, Lindsey – (R – SC) (202) 224-5972
290 RUSSELL SENATE OFFICE BUILDING
WASHINGTON DC 20510
Chambliss, Saxby – (R – GA) (202) 224-3521
416 RUSSELL SENATE OFFICE BUILDING
WASHINGTON DC 20510
Brown, Scott P. – (R – MA) (202) 224-4543
359 DIRKSEN SENATE OFFICE BUILDING
WASHINGTON DC 20510
Ayotte, Kelly – (R – NH) (202) 224-3324
144 RUSSELL SENATE OFFICE BUILDING
WASHINGTON DC 20510
Collins, Susan M. – (R – ME) (202) 224-2523
413 DIRKSEN SENATE OFFICE BUILDING
WASHINGTON DC 20510
Vitter, David – (R – LA) (202) 224-4623
516 HART SENATE OFFICE BUILDING
WASHINGTON DC 20510

[Ed note: you can still use the petition at Change.org to send your message to EVERY Member of the Full Senate Armed Services Committee with just one signature HERE.]


When Stars Align

Me: “I really don’t feel up to going tonight.”

SGM: “Me either. But hell, we have a babysitter for once.”

Me: “Good point.”

–        That was the evening last February, 2011, headed out the door with SGM to meet with Congressman John Larson and other families with autism.

§

I didn’t want to.  I had really, truly avoided this fight for more than a year after RM’s autism diagnosis.  But my name was out there and the woman was persistent.  She wanted a face for military families.  Eventually, she just didn’t take no for an answer.  How ironic.

Shannon Knall, the Autism Speaks Advocacy Chair in Connecticut, had made up her mind that the TRICARE nightmare for military families with autism needed a voice.  She had planned events with Congressmen Joe Courtney and Chris Murphy to talk with all families living with autism and she had dragged me along kicking and screaming to speak on behalf of those who serve.  Ok, so maybe I only kicked and screamed at first.

It came rather naturally for me.  Call it what you will – loud and obnoxious or passionate and articulate – but I didn’t seem to have much trouble speaking up.  I made great connections at these two events and along the way, realized I could do something about this.

After working for a very long time to get Congressman John Larson to come to the table, Shannon called me to say the time had come.  SGM, now home from Afghanistan, would join me at a gathering at a family home in West Hartford, Connecticut, to talk about autism.

Something truly amazing happened that evening.  Mr. Larson hadn’t known how many military children had autism.  He hadn’t known how bad the TRICARE/ECHO problem was.  He simply hadn’t known.

In a single conversation, the game had changed dramatically.

It was only a matter of a couple of days before I received that first phone call from his office.  Was I willing to share more?  Hello, have you met me??  “The Congressman wants to do a bill.”  WHAT?!?!?

Fast forward to yesterday.  With HR2288 CMKAA still a viable option, Congressman Larson went for a huge play and sought an amendment to the FY2013 National Defense Authorization Act (NDAA – the defense budget itself).  This would mean that autism treatments would be included in TRICARE basic entitlements and be passed as part of the NDAA going forward.  After an agreement had been reached the day before with the House Armed Services Committee (HASC), then reneged at midnight, Mr. Larson took to the US House floor to take one last shot at it.  Armed with embarrassingly large photos of our little family, he spoke so passionately about doing the right thing.  He spoke about the struggles our military families face with a child on the spectrum, without the care they need.

Mr. Larson’s efforts were snubbed by ‘procedural’ House rules.  He would have to try another avenue, but it wasn’t going to happen this day.  Ok, I thought.  Sobbing uncontrollably, I eventually pulled myself together and realized that regardless, this was HUGE.  We had brought the discussion to the floor of the House and we were going to move forward with CMKAA.  I kept my faith.

While cleaning up around my own house floor, I left C-SPAN on in the background.  At around 3:30pm, HASC Chairman Buck McKeon took to the floor to begin the debate on the NDAA.  Suddenly, I heard the words “TRICARE” and “ABA”.  My heart nearly exploded.  I was frantically listening and rewinding and listening and rewinding.  DEAR GOD, I DO NOT SPEAK CONGRESS – SOMEBODY SAY SOMETHING I UNDERSTAND!!!

I called my fellow Warrior Mama, Karen Driscoll, and screamed into the phone, “Karen! You have to call Stuart and find out what just happened! I think we did it, Honey! I THINK WE DID IT!!!”  She was just as stunned as I was and told me she would call Stuart Spielman of Autism Speaks Government Relations immediately and find out what was going on.  Stuart had been working tirelessly for the last year to make this dream come true.

In the meantime, I was just shaking violently in my living room desperate to know wtf just happened.  Literally, rocking back and forth.

The phone rings.  It’s a DC number.  OH. MY. GOD.  Here it comes.

Congressman Larson: “Rachel.  Rachel.  We did it.”

I won’t go into further detail of how I was simultaneously sobbing, hyperventilating and screaming on the phone with my United States Congressman.  I am sure you can imagine.

He managed to continue to speak above my gasping for air to tell me that it came down to Representative Tom Rooney walking across the hall to speak to Chairman McKeon.  “Sir, this is personal.”  Rooney had related his own experience with a military family with a child on the spectrum.

And that, my friends, is the best example of how much it matters when we speak up.

So many dozens of stars did indeed align over the last two years.  Too many to recount here in this one post, just as there are too many people on this earth who played a role in moving those stars into place.

We still have work to do.  We must go through the motions of securing this amendment through the Senate when they vote on the NDAA.  But I am confident we have covered all the bases and I am assured we can make that happen.

It will take a few years to implement these changes to TRICARE once we have finished this legislative process.  But it will happen.  It is a huge leap forward for all children with disabilities.  It literally paves the way for bigger and better things in the care of our kids.  Our work is not done, but we can all be so proud today.

“Thank you” will never be enough, and I cannot possibly list every individual I must thank in one post, but for beginners:

Thank you to Karen Driscoll, Marine Corps wife, mother of three, and my mentor.

Thank you to the many more military parents who have been in this battle long before I came on the scene.  Never giving up.

Thank you to Jeremy Hilton, Military Spouse of the Year, for his dedication to helping all military families with special needs.

Thank you to my dear fellow military spouse, Jeneil, and her faith and family.  Mahi, you inspire me to continue to always believe He is near.

Thank you to Jess at Diary of a Mom.  My friend, my inspiration to keep moving forward.

Thank you to Bob and Suzanne Wright of Autism Speaks.  It could not have come together without your support and your efforts to enlighten the world.

Thank you to the entire team at Autism Speaks and Autism Votes – namely Stuart, Rick, Ali, Judith, Nora, Mark, Dana and dozens more.  You all came together and learned a new piece of the puzzle and ran with it to make the world a better place.

Thank you to Congressman John Larson and his staff – namely Dave and Eva.  I love you for your service to The People.

Thank you to Representative Tom Rooney for speaking up.

Thank you to Chairman McKeon for doing the right thing.

Thank you to Mike Strautmanis and Brad Cooper for listening.  I’m still waiting to hear about those tiny doors, Mike.

Thank you to my family at AMFAS and Nicholas who continued to encourage me.

Thank you to my friends and family and my blogging sisters and brothers.  You rocked it out, people.  You ROCKED. IT. OUT.

Thank you to everyone I spammed with blog posts, petitions, emails, tweets, and general pleas for help.  You are all heroes. You are all ROCK STARS.

Thank you to Shannon.  I didn’t want to, but you didn’t give a crap about what I wanted ;0)

Cheers.

[Ed note: Oh yeah, we really are not done yet – keep signing and sharing the petition at Change.org – we must secure the Senate version of the CMKAA amendment to NDAA! Every time a signature is received, the petition and notification are sent directly to the offices of the Senate Armed Services Committee leadership. THANK YOU!]


Late Bloomer

“I want to tell you that Rachel is incredibly special in so many ways, and yet I want you to know that she’s not special at all.  I want you to know that there is nothing in her that is not in each and every single one of us, and that once it’s awakened, it can move mountains.”DOAM.

I grew up the last of five kids who were eleven, nine, seven and five years older than me.  From as far back as I can really remember my childhood they were already growing up and moving out.  I always felt so far behind.

I was the awkwardly tall girl in elementary school.  Tall and fat.  Like uber-fat and had short hair and I liked to play football with the boys in my neighborhood.  Can you see where this is going?

Anyways, my siblings gave me a lot to live up to.  My oldest brother got like one answer wrong on the Math SATs and is literally one of the nicest human beings on the planet.  My other brother, devastatingly handsome and the football star in high school, was the hilarious smart-ass who has always been much more brilliant than he has ever given himself credit for.  My oldest sister has worked for MIT and other top slots as a business recruiter.  My other sister graduated college with a dual degree and now works in state advocacy for persons with disabilities.  There isn’t a dud in the bunch.

Then there’s me.  I will let you in on a little secret.  I didn’t graduate high school.  There.  It’s out.

Not for lack of trying.  Well, actually that’s exactly why I didn’t graduate.  I didn’t try.  I didn’t like school back then.  I found it so hard to pay attention in the classroom when my social anxiety and chubby sense of humor got the best of me.  I wouldn’t say I was the class clown but I wasn’t exactly quiet and focused on academics.  I wasn’t a popular kid but I suppose I was well-liked enough.  I wasn’t a trouble-maker but I was not a saint.  I didn’t drink, I have never tried drugs and I always had a decent part-time job throughout high school.  SGM says it sounds like I was Switzerland – kind of a neutral entity.  He pretty much nailed it.

The truth was that I didn’t want to try and then find out that I wasn’t in the same league as my siblings.  So I rebelled a bit, found myself skipping classes and then manipulating the vice principal to avoid Saturday detention.  (I had been teaching Catholic Catechism classes at my church which I really loved doing and convinced the administrator at school that I was a good kid already doing community service.)

My guidance counselor was kind of a joke.  My senior year he tried to convince me to repeat because I was a half-credit shy of my English requirements.  I told him plainly that I spoke the language fairly well having been born here and that my writing was sufficient enough to score him a beautiful letter of resignation if and when he grew a conscience and decided he had chosen the wrong profession.  We did not part ways on good terms.

I decided instead to take the easy way out and spend two Saturday mornings pencilling in some bubbles on the GED.  I passed, with Honors which I found rather absurd at the time that there even was such a classification.

The short version of the next several years is that I tried a couple of different colleges with really no success.  My grades were iffy and I just wasn’t finding my place.  But I worked and had some good jobs, some fun jobs, and I was independent.  I just hadn’t really grown up yet.

Then I met my husband.  It was a done deal from that first date.  We were living together within two weeks and within a year we had a house, I was raising a teenage stepdaughter and expecting a baby of my own.  By then it wasn’t a matter of when I was going to be grown up – I was a grown up.

But marriage and motherhood suited me.  Military life worked okay for me, too.  I could appreciate the time apart from my husband while he was away, because it made the time together more precious.

I went back to school again but this time I was motivated.  I had a 4.0 first semester and at least nine years on every kid in my classes.  I was accepted into the honor society Phi Theta Kappa.  That’s Phi Theta, not Phi Beta Kappa – I was attending community college.  But do you know what the President of the school told us at our induction?  He said, “Do not ever believe that because you began here, that you have not earned the right to finish there.”  He was speaking of Harvard and Yale.  It was a life-changing moment for me.  After believing for so many years that I was not in control of my life possibilities, that instead there was some sort of station that I had already cemented myself within, I now was free to do or become anything I wanted.

After I became pregnant with RM, and SGM was leaving for deployment number one to Afghanistan, I understandably took a break from school.  It was good timing and would allow me to process the possibilities of what to pursue next.  But RM’s arrival was a complicated one, and the road since has been bumpy.  School would have to wait.

When my daughter was diagnosed with autism and I found out what little services are available to our military families, I was OUTRAGED.  I mean, seriously?  My husband gets shot at by Taliban and our kid gets left behind on the battlefield back at home?  So. Not. Cool.

But who am I?  What could I possibly do to change this cluster%#@&?

Well, actually, little ol’ me who never graduated high school and still has yet to earn a college degree, did do something about it.  I spoke up.

That’s it.

I just spoke up.  I said THIS. IS. WRONG.  I said our military families deserve better for their children with autism.

There is not a class for this.  Well, actually I am sure there is somewhere and it is probably very informative, but it is not a prerequisite to make the world a better place.

So, whether you’re a Late Bloomer like me, or you have advanced degrees in ass-kicking advocacy and legislative endeavors – do something.  You are just that incredibly special in so many ways, and yet I want you to know that you’re not special at all.

[Click –> HERE <– to support HR2288 by asking your Member of Congress to move this bill forward! Thank you!]


“I’m Just a Bill” by CMKAA

[Updated May 28, 2012]

For anyone looking for a refresher on how the Caring for Military Kids with Autism Act – formerly H.R. 2288 (CMKAA) is going to need your help to get passed, I’m handing over today’s post to Schoolhouse Rock.

Our “Bill” passed the House, but is now in jeopardy of dying in the Senate.  He has already been shot down once.

Don’t let CMKAA die in the Senate Armed Services Committee.  I don’t have the cash or enough booze for the funeral.

Thanks.

Click –> HERE <– to sign the petition at Change.org.  Every signature is sent to every Member of the Senate Armed Services Committee. That’s where “Bill” is waiting to be voted on. He already passed in the House.

23,000 military kids are counting on you.


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