Archive for February, 2013

I’ve been following Ava’s Law closely in Georgia the past few months and am appalled at some information I gleaned from various social media postings today reporting Senator Renee Unterman’s public position on HB 309. How could the Chair of Georgia’s Senate Health and Human Services Committee have stated something as callous as, “If she had to pay $100,000 for her own child’s therapy so should they.” People in District 45 need to send a message to this lawmaker that’s loud and clear. It’s also important to note that her position, as stated in her Senator Bio, is described as focusing, “On health and social law, consumer issues, and has given special attention to the young and vulnerable.” If you go back to her election promotion website, www.voterenee.com, you’ll find the following as the last sentence in her introduction biography text, “She continues to fight for a change in Georgia law and policy that will allow children to be assessed, receive therapeutic services, and be given the opportunity to have a normal, successful life.”

Why did this statement disappear from the Senator’s introductory biography text after election? Why is she currently opposing the adoption of HB 309, which would bring a much needed series of intervention programs to the state of Georgia, enabling children with Autism or at risk for Autism, to receive the necessary and scientifically-based therapies that may provide the very positive change she discussed in her About Me text.

Senator Unterman's About Me text included this statement in her pre-election promotion, "She continues to fight for a change in Georgia law and policy that will allow children to be assessed, receive therapeutic services, and be given the opportunity to have a normal, successful life."  What happened to this part of Renee Unterman's biography text?  Is it simply forgotten now that the election is over?

Senator Unterman’s About Me text included this statement in her pre-election promotion, “She continues to fight for a change in Georgia law and policy that will allow children to be assessed, receive therapeutic services, and be given the opportunity to have a normal, successful life.” What happened to this part of Renee Unterman’s biography text? Is it simply forgotten now that the election is over?

Most of these therapies are available and covered by insurance for young children and school-age children in nearly 37 other states throughout our nation! Therapies like ABA, play-based, occupational therapy, speech therapy, and many others, provide a roadmap for a more successful development of skills needed for true independence, communication, and future hopes. It is far less costly to provide what each child deserves and needs then it will be to support and provide for those that don’t receive a fair shot at communication and independence!

The Senator’s statement, “If she had to pay $100,000 for her own child’s therapy so should they,” is shallow and cold, at best. Not every family has the luxury of a senator’s salary to support such intervention costs! These children deserve to receive the same proven and beneficial therapies currently available throughout most of the United States. If HB 309 doesn’t pass, then the noble concept of our nation’s “No child left behind” policy will fail miserably and all because Georgia legislators decide that these services should remain “Cadillac services” only readily available to those with abundant salaries and financial support. For the price of thirty-two cents each year per person, all children in the state of Georgia could receive the supportive therapy that may change their life substantially, for the better.

Yet, Unterman has been reported as stating that she believes this cost is under-estimated. Despite a growing amount of support from Georgia residents, Senator Unterman continues to oppose this bill. Could it be that she is too involved with lobbyists from insurance corporations that fear they may be required to foot the bill for autism therapies like so many reformed insurance providers around our country? She lists her occupation as an insurance executive; perhaps this is the damning connection.

Today, hundreds of parents personally visited the capital to show their need for support, but went home very disappointed. I think voting this in should be a no brainer, sadly it appears that this issue has been moved into the mandate committee – a place where it could be stalled for another year. I hope that you’ll join me in signing their petition and sharing this message to increase support for Ava’s Law. We need to force legislators who oppose this bill to open their eyes to the necessity of providing early autism therapies. Please take the time to write a brief letter to Senator Renee S. Unterman at 121-H State Capital, Atlanta, GA 30334 or email her at Renee.Unterman@senate.ga.gov. Let’s make certain she knows that our friends in Georgia are not alone in their fight!

Best regards,

Muckraking Maven

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UPDATE:  3/11/13 I am overjoyed to update this older post with news that Disneyland did care, respond, and make amends!  Read the full story here:https://muckrakingmaven.wordpress.com/2013/03/11/disneyland-response-to-disability-grievance-is-above-beyond-expectations/

I’m so glad that they really cared to look into this matter!

 

Disneyland Resort
Guest Communications
Post Office Box 3232
Anaheim CA 92803-6161

RE:  Disability Grievance

Dear Sir or Madam:

My son is four years old and has autism.  During our recent visit to Disneyland on February 13, 2013, we encountered problems with acquiring a Guest Assistance Card to accommodate his disabilities in accordance with your disability policy.  This letter provides details on our disability grievance and recommendations to correct the present issues.

Although many people believe that autism is an invisible disability, this is only true for those persons not living with this handicap.  Sadly, it’s not invisible in our home.  It’s present in every moment of every day.  It has been ever-present since the time my son was just 15 months old and started an aggressive array of early intervention therapies that included over 35+ hours of hard work each week.  From the time my four year old wakes up to get ready for school and needs to be walked through a series of picture-story strips to guide him in all steps required to dress, potty, brush teeth, and wash hands to setting up the day’s visual schedule before the small, yellow bus pulls up to our house.  It’s present in the large amount of social stories I must create to explain routine social situations and processes to my son; and even present in a public restroom where my son has trouble tolerating the barrage of overwhelming sounds from toilets flushing and hand dryers blaring as my son runs to the furthest corner, squatting down and covering his ears with little hands while tears stream down his face due to sensory dysfunction.  Yet, to most people, my Wyatt appears to be a normal enough little boy.

Wyatt’s invisible disability emanates from a combination of visual, social, and auditory communication challenges, as well as sensory dysfunction, echolalia, poor gross motor coordination, low muscle tone, OCD, and severe anxiety.  You only need to pay closer attention to see how this adversely affects his ability to communicate his needs, wants, and fears on a daily basis.   He works very hard every day to overcome these disadvantages and challenges at school for five hours and then another two with a private teacher in our home.  We don’t often get to experience family vacations due to his demanding schedule of occupational therapy, applied behavior analysis teaching, speech, and other commitments.  However, we are happy to make this sacrifice in the hopes that he will learn how to communicate, cope, and grow into the amazing individual we know he will be.

Families struggling to care for children with autism also encounter difficult financial struggles. There are many medical specialists and procedures that are not covered by his insurance – these expenses must be paid out of pocket.  Often, children like my son, also have severe food allergies that require the purchase of dairy-free, gluten-free, and other foods that come at a higher price.  Furthermore, it is difficult for my husband and myself, to both hold full-time jobs because at least one of us must be ready and able to attend to our son’s therapy needs on a daily basis, ultimately lowering our potential family income.  For all these reasons, and most especially because my son has stated every night for the past eight months before bed, “I’m gonna have sweet dreams. I’m gonna dream about Disneyland.”  We look forward to coming to the park at least one day each year with the discounted tickets provided through our local regional center and Disneyland Resort’s 2013 Community Involvement program.  This is all our five-person family can afford and we expect this one day to be pure magic for our son.  It’s one hundred percent, all about Wyatt having an awesome time at the, “Happiest Place on Earth.”

However, for the past two years, we have experienced trouble in obtaining his Guest Assistance Card with the following designations for our one day vacation:

  • Guests can use an alternate attraction entrance, where available.
  • Guests can use their stroller as a wheelchair.

This year, we were told by the Customer Relations representative in City Hall that the policy was different this year and that each attraction would make the necessary determination of how to accommodate our son’s disability.  We were prepared with supportive documentation that included a letter from my son’s doctor, recent occupational therapy assessment results that provided specific details on his sensory dysfunction, and also psychological and educational communications from his school because we faced similar challenges in receiving the guest assistance required for our one day from Disneyland Resort’s 2012 Community Involvement program.  However, this representative would not even look over the paperwork supplied.  He grudgingly permitted us the, “Guests can use their stroller as a wheelchair,” and remained firm on his statement that the alternate attraction entrance policy was now different.  Not getting anywhere and with a four year old already on the brink of meltdown due to the City Hall delay, we decided that we would give this a chance and see if we were worried over nothing.

Our first ride went smoothly, because the line was very short, at just under five minutes to ride the Toy Story ride.  Next, our son wanted to try out Star Tours, but we were very rudely told that there was no visible disability and that we could wait in the regular line just like every other person.  At this point, my husband realized that the Customer Relations representative must not have told us the truth regarding the alternate entrance policy for deserving disabilities.  He went back to City Hall where he had to argue and demand to speak with a manager before the stamp was finally produced to add this designation to our card.  This was nearly two hours and three meltdowns later for our son.  In fact, my husband informed me that the manager wouldn’t budge on the alternate entrance until he stated loudly, “This is NOT the happiest place on Earth today!”

The remainder of our morning was fairly decent until we crossed over to the California Adventure to experience Cars Land.  At Cars Land we experienced every ride breaking down, including Luigi’s Flying Tires just minutes after we finally boarded.  My son waited in line to meet Lightening McQueen only to be told when it was finally his turn that McQueen needed to take a break and that he could stay and wait for Mater.  (Meeting McQueen was my son’s primary motivation for visiting Cars Land.)  Later my son spotted Red, and we made a beeline to visit this character only to see Red backing away for another break right as we arrived.  This resulted in our fifth massive meltdown of the day and my son requesting to leave Cars Land and just go home to play computer.  It was very sad to see that magic gleam – that just about every kid possesses while at Disneyland – dim so, as he insisted we leave because he was disappointed.

Now, I know that it’s impossible to predict what mechanical problems might arise regarding rides throughout the park, I found it odd that the only three present in Cars Land were on the fritz.  Additionally, I’m still scratching my head wondering why the animatronic cars characters required so many frequent breaks?

I want to understand why it’s so difficult to obtain the Guest Assistance Card with the supportive measures my son requires to have a good time at, “The Happiest Place on Earth?”  Why are parents treated as fraudulent liars when they bring official documentation to prove their son’s disability and challenges?  Furthermore, how can these judgments even take place when your staff refuses to look at the clear, black and white information placed in front of them?!  It is crystal clear to me that we would never receive the supports we need if we merely stated that, Our son possesses a medical condition that makes it difficult for him to tolerate crowded areas with loud sensory experiences as your policy advises.  In today’s world, where 1 in 88 children are diagnosed with autism, how is this not a more recognized disability at City Hall?

It makes me wonder about adults living with such disabilities that must advocate for them self at City Hall.  How are they able to negotiate the supports they require without the secret language that must be required by Disneyland Customer Relations representative staff in the midst of lesser social skills and perhaps even a disadvantaged ability to clearly articulate their needs?

I hope that this will not be an issue in any future trips to Disneyland.  It is a shame that my son’s single day at Disneyland this 2013 was fraught with so many unfortunate mishaps and failures to meet his needs.  If anyone takes a moment to Google disability complaints with Disneyland it’s very apparent that there are large numbers of families coping with similar issues around the nation.  Please take the time to educate all staff of the invisible nature of autism and its substantial challenges.  Sensory dysfunction is real. Receptive language disorders are real. Crowd-induced anxiety and resulting aggressive behavior is real.  Autism is not an invisible disability – you only need to open your eyes to see the need for greater understanding and awareness.

Here's the heap of letters I'm sending out to top Disneyland executives.  I hope that someone reads my letter and considers the need for improved training of City Hall cast members.

Here’s the heap of letters I’m sending out to top Disneyland executives. I hope that someone reads my letter and considers the need for improved training of City Hall cast members.

 

Sincerely yours,

Muckraking Maven