The Financial Burden of Autism. A new study tells the untold story we all face

The cost of autism in our household is never ending. From dental care (his first dental procedures at age 5 cost over $4,000), to medications (high co pays and some not covered by insurance), to non covered interventions and supports. It's expensive. This is not a new story...I will never forget my first call to my insurance company asking for help. I remember it so well I can repeat it word for word, so I will. Here goes:

Me: Hello I need a medical referral for my son
Insurance Co: Okay. What do you need a referral for?
Me: My son needs a referral to a speech pathologist.
Insurance Co: Why? What is the diagnosis?
Me: Because he used to talk, and now he can't talk. I don't have a diagnosis, that's why I
need the referral.
Insurance Co: Well without a diagnosis we can't make a referral.
Me: Well the diagnosis is HE HAS LOST HIS ABILITY TO SPEAK, isn't that enough.
Insurance Co: No mam, that is not enough, we need a diagnosis
Me: Well how do I get one without seeing a specialist?
Insurance Co: I don't know. You just have to have a diagnosis for me to help you.
Me: I was told that I should call my insurance company for the referral to a speech pathologist to find out what is wrong.
Insurance Co: No mam, I understand but that is not enough, we need a diagnosis
Me: Well, I spoke to one person who said I should see a speech pathologist and get him
evaluated for Autism, that might be the diagnosis.
Insurance Co: Sorry, mam we don't' cover autism. I can't help you.
Me: You can't help me?
Insurance Co: No mam, we dont' cover autism and with that diagnosis speech would not be considered a medically necessary treatment.
Me: My son's lost of speech isn't covered because what? Helping him isn't medically necessary? Are you for real?
Insurance Co: I'm sorry mam I can't help you. Is there anything else I can do for you today.
Me: I just hung up and yelled and screamed and cried.

Eventually I found a speech pathologist and we paid out of pocket until I was able to get other resources and eventually my insurance company began helping. However, this is just one example of the challenges we face when seeking care for our kids, who have a diagnosis not fully recognized by the medical community. This new study speaks to that challenge and it's well worth the read.

Today I found this article and I had to post it. It speaks directly to a problem I dont' hear enough about, how we pay to help our kids when the systems don't recognize our needs as "medically necessary".

FINANCE

Study Shows Families' Financial Strain
From Autism

The Associated Press is.gd/9KIt

More than half a million U.S. children have autism with costly health care needs that often put an unprecedented financial strain on their families, national data show.
Compared with parents whose youngsters have chronic health care needs but not autism, those with autistic children are three times more likely to have to quit their jobs or reduce work hours to care for their kids. They pay more for their kids' health needs, spend more time providing or arranging for that care, and are more likely to have money difficulties, the study found.
"This is the first national survey that looked at the impact on families of having kids with special health care needs," said lead author Michael Kogan, a researcher with the government's Maternal and Child Health Bureau.
The results are from a nationally representative 2005-06 survey of nearly 40,000 children with special health care needs. These children have a broad range of chronic conditions, including physical and mental illness, requiring more extensive than usual medical care.
A total of 2,088 children with special health needs had autism, which translates to about 535,000 kids aged 3 to 17 nationwide, the study authors said.
The study appears in December's Pediatrics, being released Monday.
Autism typically involves poor verbal communication, repetitive behaviors such as head-banging, and avoidance of physical or eye contact. Affected children often need many more types of treatment than kids with other chronic conditions, including speech and behavior therapy and sometimes medication. Kogan said that may explain the disproportionate strain on their families.
Jacquie Mace, whose 12-year-old son, Austin, has autism, said the study presents a "very realistic" picture of the challenges affected families face.
Mace said she spends "easily $15,000 to $20,000 out of pocket" yearly on supplies for behavior treatment she provides for her son.
She's still working to pay off a $7,000 bill for dental work Austin had last year. He has to be sedated and hospitalized for dental care because he can't sit still in a chair, Mace explained. Austin's health insurance doesn't cover any of it, she said.
Some states require insurers to cover certain autism treatment while similar proposed measures are pending in others, including Illinois.
Mace hasn't had to quit her job helping local families find autism resources, but knows of many parents who've had to leave work to care for their autistic kids.
She is divorced - another common casualty, she said, of the challenges of caring for autistic kids.

President Elect Obama working for Autism!!

President-Elect Barack Obama Drafts Federal Autism Insurance Mandate Bill

Wow! Earlier this week I wrote about my conversation with then Senator Obama and how confident that I felt about him helping our children. Well he's not in office yet, however President-Elect Obama has already drafted comprehensive autism legislation, including a section addressing a broad based federal autism insurance mandate.

I pulled this statement today from Autism Speaks. Enjoy everyone.

In his Presidential campaign statement on Autism Spectrum Disorders, President-Elect Obama committed to bringing autism insurance reform to the entire nation. The statement stated that Obama and Biden "will mandate insurance coverage of autism treatment and will also continue to work with parents, physicians, providers, researchers, and schools to create opportunities and effective solutions for people with ASD." For the complete campaign statement, and to read the draft legislation, go to www.autismvotes.org, and be sure to sign up to receive action alerts pertaining to this important initiative.

Autism and Politics

Over the past few months I have listened to many families with special needs kids get excited about Sarah Palins commitment to special needs children. I was very happy to watch her bring Downs Syndrome and Autism center stage in this important election. Everyone needs to know about out kids, our challenges and get on board as a community to support our most vulnerable citizens. I however, did not believe the Palin/McCain political campaign promise to get IDEA fully funded. I believe in the idea and the hope and like all families impacted by a disability I know this funding would make the world of difference for so many people. However, given our country’s current economic crisis I could not imagine how IDEA could get fully funded without raising tax's, and in light of the recent financial bailout I thought this was a campaign promise that could not happen. Folks have been unsuccessful in their fight to get IDEA fully funded when we were not in financial crisis, hence I was angry that this carrot was offered as part of a campaign, even if it was offered in earnest.

I am an Obama supporter and I believe if he is successful in the reforms he has proposed our children will benefit. I believe this not only because of what I have heard in the news but because of what he said to me personally. In October of 2007 I was invited to a small gathering to meet Senator Obama and to learn about his campaign. At the time my only real thoughts of him where what I had seen and hear surrounding his speech at the 2004 democratic convention; he was a very sharp young man with a exciting future ahead. I didn’t get warm fuzzies about Hillary but in my mind she was the presumptive nominee and I was excited about having a female president.

As the 70 to 80 guests walked about enjoying fabulous food and a beautiful day in Malibu most were talking about this new guy they were curious about. Why had some Entertainment Moguls abandoned Hillary and endorsed this guy? Why? Who was he?

Again, I didn’t know enough to have a thought but I was excited to be there. After an hour of folks eating and talking, Senator Obama came into the yard rolled up his sleeves and spoke about why he was running for president. He was running because he believed he could make a difference, he believed that our country was off track and we deserved better and that perhaps it was the new guy, and not the old guard that could make a difference. I felt goose bumps on my arms, as I was touched by his genuine candor, passion and conviction. After laying out his platform and telling us what was “different about him” he offered to take questions. My hand seemed to fly into the air and take my body with it, and I was on my feet waving my hand like a kindergartner. I think he actually meant to call on a lady behind me, but I was so animated he had to take us both.

When my turn came, I asked “Senator Obama I am a single mom, a business owner, a minority and the mother of a child with a severe developmental disability, Autism. Healthcare and entitlement systems are inadequate to care for my son. My son is part of an epidemic that our society would prefer to ignore or at least not help. I pay $700 a month to my medical insurance company who provide limited coverage and routinely try to cancel us. Their position autism is not an Insurance covered diagnosis. It is horrific that the most fragile of our society are treated with such disregard by insurance agencys. That said, Hillary worked so hard for get universal health care, she had passion, intelligence, a great team of brilliant thinkers and support, yet she failed. Why do you think you can be successful?”

Senator Obama took a deep breath and said “I am familiar with Autism and I am sorry”. “I believe I can make a difference, because I will not accept no for an answer. I will bring everyone to the table with a mandate that this must be done. All Americans are entitled to healthcare. I acknowledge that all sides will have to give something up, and a lot of people will not be happy about giving something up. I know it will be difficult, but I will not approach it like an option it will be a mandate and I will work until we find a solution”.

He went on to answer a few questions before his team scooped him up and took him inside his host’s home. My guest and I were so engaged in conversation we didn’t even notice that most of the group had departed. When we looked up the crowds had disappeared. I looked up and there stood Senator Obama with his team in tow. He stopped and I showed him a picture of my son and he said “I know this is tough I’m familiar with Autism and we will help”. He then faced the beach. His team began to direct him to the exit for his next stop and he raised his right hand in a motion of no, wait and he said “Hey guys I’m at the Ocean, It’s a beautiful day, I just need a minute to look at the water”. It was in that moment that I was the most moved. For all the busy plans and elections to win, this man knew the importance of appreciating this planet and the simple joys of the moment. That’s when he had my vote and my heart.

A little over a year later, it’s time to vote and I’m anxious and excited. I am excited because if Obama accomplished nothing other than showing that in America anything really is possible. A little known African American Senator can run for president and get the nomination of the Democratic Party. With the right stuff “one of us- any one of us” can unite millions of Americans and get them organized in a way this country has never seen and let the world know that as a country we are no longer collectively bound by the real and perceived limitations of racism. This is something every American should be proud of, I sure am.

As a parent of a special needs child I believe if we can overcome racism as a country we can overcome "ableism" and create better lives for our children.