Monday, January 06, 2014

Why what Disney is doing matters?

I wanted to address this point, but I remembered that this blogger really has said much of it...

That isn't to say that I don't have more to say.  I can always find more to say.  But this post is a good start.

Sunday, January 05, 2014

IAAPA - What is it?

In all this Disney talk, you know what would really be of benefit - a standard set forth by their association that brings common accommodation standards to all American theme parks.  One that preserves access for those with physical, intellectual, and developmental disabilities in people of all ages and meets their needs while having some level of fairness for those able bodied people who have to wait in line.

I think the move from GAC to DAS has been a step in that direction.  However, it was poorly vetted by Disney with stakeholders and disastrously rolled out.  As a point of law, there are reportedly obstacles in access for the disabled (the kiosks in California) that undermine compliance with ADA.  There is no indication that Disney is interested in incorporating feedback from visitors or engaging with advocacy groups like the ARC, the MS Society, or others that represent and have knowledge of the collective needs of their constituents.  In order to avoid lengthy conflict and possible litigation, they need to regroup and reevaluate what is working and what isn't.  

I get a little suspicious of DC based associations - I truly believe their first function is to lobby for the corporate interest.  That said, the International Association of Amusement Parks and Attractions would be a fine organization to begin the dialog with and to get companies like Disney, SeaWorld, Six Flags, and Cedar Point to evaluate their existing programs and move to one common standard that would incorporate things like virtual queuing and educating groups to the law and the need for staff training while providing an opportunity for feedback from advocacy groups, physicians and therapeutic providers, and other stakeholders.  

I also think these advocacy groups, providers, and others who are knowledgeable or interesting in seeing how DAS is working at Disney should be shadowing families in the parks to see what is going on and how things can be improved for all.


Realityblah's Rules of the Road

Since I am just starting blogging again after a long break, I guess I should explain why I moderate my comments.  It started as a spam block, but I have utilized a few time to not post comments.  From time to time, someone will leave me personal contact information that I don't think should be posted generally.  Sometime is to delete nonconstructive, anonymous or rude comments.  I won't block you because you don't agree with me - ask Chuck.  Chuck used to comment on my political stuff all the time and clearly he didn't agree with me - but he did so respectfully, using a consistent identification and IP address.  But if you post calling disabled parents whiners without a name, yes, I am not posting it.  If you want a dialogue about why I feel the way I do and share your viewpoints, I will do that all day long - as you attempt to be civil, respectful, and consistent and honest in your identification through profile, name, or handle.  If you are a lobbyist and don't declare it, I will call you out (that's happened before too...)

I have more respect who comes to me in person and says something outright hurtful ("Isn't there prenatal testing for that?" and "It's irresponsible to bring a disabled kid into the world and expect my tax dollars to take care of him.  You should have had an abortion." - experienced both) than someone being rude or dishonesty behind the anonymity of a keyboard.

My blog, my rules....

Saturday, January 04, 2014

Jenny McCarthy's son is still autistic...

Still not my favorite person... I think her anti-vaccine advocacy is beyond harmful to children.  The rift surrounding this issue keeps families dealing with autism at odds and unable to work collectively for whatever "greater good" there is to be found.  But I would be pissed too if I was misquoted or my truth was misrepresented.

Vacation winding down...

Jimmy has been wandering around the house repeating "School Monday" and "Audrey," the name of a classmate.  He knows what is coming.  I am hoping for no more snow day interruptions - he finds those more disruptive than planned breaks.  Here's hoping he doesn't dart from the bus.

It has been a fun filled break, with trips out and about, visits with his favorite aide Erica, and a mall outing or two.  We took him without the stroller - it was brief and there were two parents attending.  Of course, he idea of fun is going to the Apple Store (which was relatively uncrowded) and playing with the same iPad he has at home.

He got a couple of stares when he squealed (one college aged guy just stared, walked away, turned around, and stared some more - seriously annoying) and his Project Lifesafer device gave the sales girls at Forever 21 (his favorite store since the tile sparkles) because it set off the alarm coming and going.  It was a brief trip, a little stressful keeping him contained, but otherwise successful - the ultimate measure of that in how much fun he had out.

Friday, January 03, 2014

I'm back...

We shall see for how long or how often.  I have been extraordinarily busy for the past year or so with work, parenting, and real life in general.  Sometimes you just get tired talking about autism - the experience, the diagnosis, the silly controversy...  I think I have been there with this blog.  But as I see families losing ground in this battle, I though maybe it is time to speak again....

We are long time Disney fans who have been heartbroken to hear of the disgusting abuse that parents and children are enduring at the hands of cast members in both California and Florida.  The disability accommodation system in all American Disney parks were gutted to "address" fraud issues that came to light last spring.  The tumblr site A Tragic Kingdom and a Facebook page of a California advocate have done an excellent job of keeping feedback of the largely negative experiences of families with this new DAS system.  There is some sort of perception going along with all of this that this accommodations are a luxury or, as one cast member told a family, "an indulgence."  The Americans with Disabilities Act is not an indulgence, it is the law.   From the U.S. Department of Justice website:

The ADA does not require affirmative action or preferential
treatment of individuals with disabilities.  Public
accommodations, however, are required in certain cases to make
reasonable modifications to their policies, practices, or
procedures when modifications are necessary to afford goods,
services, facilities, privileges or advantages to individuals
with disabilities.  See section 36.302 of the title III
regulation at page 35596-97, and preamble at 35564-65.  In light
of this requirement, an amusement park may be required to modify
its policies to allow an individual with a disability to be
admitted to an attraction without waiting in line, if delay would
prevent the individual from participating in the service because
of the nature of the disability.  

Ultimately, I think this will wind up with the DOJ and in the courts.  I have corresponded with them about this issue a couple of times and know that Disneyland and Walt Disney World are being looked at as many families are sharing their experiences with discrimination at these parks.  If the above interpretation is applied, Disney and other theme parks will get way more than they bargained for in the extent to which they must provide accommodation.  

My hope is that a balance between the needs of those with disabilities and those without can be balanced fairly and reasonably, in line with existing federal law.  But I don't think Disney is willing to do it without legal intervention.  The fact that people are being harassed by Disney employees, treated with a level of contempt reserved for criminals, is just making the situation worse for all involved.  I am also certain, in fairness, cast members are encountering hostile parents and caregivers.  Minimum wage park employees and "cast members" should be not be put in the position of interpreting the law or defining the accommodations needed without any sort of medical or therapeutic background.  

An easy fix to this is clarification of HIPAA - allowing parents and the disabled who wish to disclose medical records and physician correspondence in support of accommodation.  Currently, this is not only not required, but Disney staff won't even look at it if you bring one.  I bring a diagnostic letter and specific letter request and delineating needed accommodation every time and they refused to look, saying "it's against the law."  This reflects a severe lack of understanding of the law and illustrates that there will be no easy fix to this whole debacle and the disabled will be paying the price for the time being.

Edit:  By the way, I will gladly approve comments, even those negative, as long as they don't resort to name calling...  And are given with a name or handle.