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Healthcare & The Autism Vote
As a parent of a child with autism, how will you vote?  One thing is for sure, autism doesn’t ask you whether you are Democrat or Republican before it affects your family.  Autism, on the surface, appears to be a non-partisan issue.  But across this country we all have very different views on how healthcare and disability issues should be addressed by our government.


While I am not a one issue voter, autism is high on my list, shadowed only by the economy at the moment.  Our children with autism are very much affected by the policies of whoever is in office.  When it comes to autism, the issues are multifaceted.  You find yourself not just simply asking what is a candidate’s stance on autism.  You also need to know his/her position on autism research, special education funding, I.D.E.A., vaccines, inclusion, parent rights, and the list goes on and on.  Early on in our family’s fight with autism, we discovered as many do, a serious illness will quickly bring to light how important healthcare is and how that very issue impacts a family touched by autism.


For those of who do not have a child with autism, imagine finding out one day that your 2 year old child has a serious neurological condition.  Picture yourself working full-time but you have no healthcare benefits because your employer doesn’t offer them or perhaps you are a small business owner who can’t afford health insurance.  You are scraping by and barely keep a roof over your family’s head.  You make too much too get free healthcare from the government.  But you make too little to afford the $1200 a month it will cost to insure your family.  What do you do now that your child has autism?


If you are lucky enough to have insurance, you quickly find out that many critical autism services your child needs are not covered by your health plan.  Your child needs speech therapy.  Sorry, not covered because your child has a developmental disability.  Your child needs behavioral services.  Sorry, not covered.  And if by some miraculous feat, the ancillary services are covered, you can assume that you are only covered for a limited number of visits (because your child’s serious language delay should be “cured” with only 20 visits, don’t you know?).  If you need more visits, we may be able to grant you additional visits but we will need to review your files and check with the therapists and maybe in a month, we will get back to you.  Didn’t you read the fine print in your healthcare policy?  Sorry, that service is not covered because your employer did not select the health plan that pays for it. 


If you are a parent of a child with autism, you know the scenario all too well and it is indeed, a “sorry” state of affairs.  When my son was first diagnosed with autism, his father and I spent every last dime (and then some) on doctors and treatment.  Some of the testing was covered by insurance but most of it wasn’t.  Even though the insurance paid for “out-of-network” services and doctors, we had to pay the doctor first and then submit everything for reimbursement.  If we were lucky, we might get reimbursed after a long fight with the insurance company.


Soon after, we became aware of behavioral services.  Our insurance would not pay for these services, and there was no way we could afford them on our own.  When we took our son to get speech therapy and occupational therapy, the insurance companies (yes, we had 2 health insurance plans), both refused to pay for speech therapy because “autism is a developmental condition”.  Having a good job or 2 good jobs in our case, didn’t matter.


Thankfully, we live in Pennsylvania.  Children with autism in Pennsylvania have access to healthcare, including therapies and Applied Behavior Analysis (ABA), via Medical Assistance, also known as Medicaid.  Medical Assistance (MA) provides government funded health insurance for the very poor and disabled.  While it is true that all states participate in Medicaid, some states do not pay for important autism services such as ABA.

Another plus for Pennsylvania is that our legislators passed a bi-partisan bill requiring health insurers to pay up to $36,000 per year for autism services (Act 62 of 2008).  Until recently, insurance companies in Pennsylvania could deny healthcare services such as speech or occupational therapy for children with autism.  While I remain cautious about how the new law will be interpreted by the insurance companies and providers, I fully support the parents and legislators who helped make this law a reality.  Many parents and legislators in other states are still fighting to get autism covered by insurance companies.


Despite Pennsylvania’s positive record of taking care of the disabled and poor, Medicaid has been threatened and cut at the federal level.  Over the past 8 years, I, and many other parents of children with autism, have traveled to Harrisburg to autism rallies to protect MA for our kids.  Yet, certain legislators across the country continue to look to cut Medicaid and the issue is far from resolved.


So how will autism and healthcare affect your vote?  Candidates, presidential or otherwise, have very different views on healthcare including the funding of MA.  Fundamentally, you as an individual either agree that every man, woman and child in our country should have access to healthcare or you don’t.  Do you believe healthcare is a right?  Does a poor family’s child with autism deserve the same access to medical care as a child who comes from a wealthy family? 


The reality is that while we can close our eyes and pretend it doesn’t exits, there are children with autism who are still being denied therapy by insurance companies.  There are children, who through no fault of their own do not have healthcare insurance.  There are many hardworking men and women, with jobs, who do not have health insurance. 


There are seniors who worry about healthcare, like my 64 year old mother who was turned down by several insurance companies because of pre-existing conditions.  So in addition to worrying about a heart condition, she needs to worry she doesn’t get sick when she’s at her home in Delaware because none of the doctors or hospitals in her area take her health plan.  She looks forward to turning 65 just so she can get Medicare. 


So when voting, one needs to ask themselves if everyone in America has the right to healthcare.  If you support the right to life, do you support providing healthcare so a man, woman or child can live?  Hard times bring hard questions and actions.  One may answer “yes” but vote for a candidate who would never truly support such an idea.  Or perhaps your answer to the question is simply “no”.  Perhaps, people believe that because they have a job and their health (not just health insurance), that their family and child deserve health care and others do not. 


Whatever your answer is to the question, I would encourage parents of children with autism and their family and friends to take the time to think about the issue of healthcare.  Does every person in the United States of America deserve healthcare the same way our country provides a free and appropriate public education?  Is healthcare a right?  If you think yes or no, say your answer out loud and own it.  Then look again at the candidates and see if their answer matches your own beliefs.


This election day, I will own my beliefs and vote accordingly.  As many parents who have a child with autism, I have experienced what it is like to have health insurance yet still have not have access to the healthcare my child needs.  Even though our personal beliefs and our children’s needs are all very different, parents of children with autism are bound by a common thread.  Whether you are focused on vaccines, I.D.E.A., school issues, parent rights, adult issues or healthcare, autism will indeed influence your vote.



Interested in how the Presidential candidates stand

 on healthcare and autism?  Check it out!


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