An Open Letter to North Carolina General Assembly

UPDATE II:  1/9/12 I added a second post on how you can help.  Please check it out.  Keep sharing!  Thank you so much.  ”Taking Action on Autism Insurance Reform”

UPDATE:  1/9/12 What an amazing response we’ve received.  Lot’s of people asking how they can personally help.  I have a few calls out to those who are more policy savvy than I am and will post soon with some tangible ways we can all work towards making this a reality.  Thank you again for all the support.  Please keep sharing in the meantime!

- Debby

I want to introduce my son, Peter Alexander Torres.  He is five years old, loves Super Mario Brothers, is an advanced reader and a proud Raptor at Rashkis Elementary School in Chapel Hill.

An only child, my husband Gus and I, along with our parents and Gus’ sister have done everything in our ability to provide every opportunity for him in life.

Yet for as much as he is our own treasure, Peter is also “Everybody’s Boy”.  Over the past five years there have been countless individuals in the community that have dedicated a piece of their life, their time, their money and their hearts to ensure his success in life.  He’s their boy too.  In fact, he could be your boy.  He could be “Anybody’s Boy”.

You see, Peter has Autism.  He is one of 1:91 individuals in America that struggle with communication, social interaction, emotional regulation, sensory processing and so much more.

He began early intervention therapy at 18 months of age.  He was completely non-verbal.  We knew he needed more opportunities for him than our home state of Florida could offer him.  We moved to North Carolina, not solely because of Peter’s developmental delays, but certainly in light of them.  He was diagnosed with Autism 5 days before his second birthday through the CDSA (Children’s Developmental Services Agency).  Inside of a month he was connected with UNC’s TEACCH program, and began a 7 day a week schedule including Behavioral therapy, Occupational Therapy, Parent-Teacher Training Sessions and Speech Therapy.

As devastating as an Autism diagnosis can be – we felt grateful to be here, in North Carolina – a land rich in research and resources for our child.

We knew that CDSA services ended at age three so we immediately contacted our private insurance company and they informed us that Autism was not considered “habilitative” and under North Carolina state law they were not required to cover the cost of any treatment.

We were advised that Medicaid was our only option, but our income was too high for us to qualify.  Out-of- pocket costs for the therapy regiment he was on were in excess of 40, 000 per year – which at the time was more than our annual pre-tax income. 

In the meantime, we contacted our Local Management Entity and secured a spot on the CAP (Community Alternative Program) waiver waiting list.  Knowing that eventually he would receive a CAP slot through the waiver program, but well-aware that due to the program being woefully underfunded the wait could be years.

We applied for SSI and Peter’s benefits began in July 2008.  Through SSI, Peter received Medicaid which covered all of his habilitative services.

When Peter turned three we transitioned to the Chapel-Hill/Carrboro City School system who has provided school-based services through an IEP with which are invaluable to his success in school.

These services on their own, however, are not enough.  Through Medicaid we have continued working with a team of professionals privately.  The progress in Peter a testament to the multi-pronged intervention program as much as it is his own hard work.

Though he is academically on grade level (or advanced) and verbal he still struggles every day.  Peter has a hard time regulating him emotions, communicating his feelings, wants and needs and having reciprocal relationships.  He is extremely impulsive.  Turning our backs for a moment is not an option.  He runs away (into traffic, without shoes), he harms himself, and has harmed others when out of control. He has literally jumped into a lake fully clothed with me at arm’s length on impulse.  Autism is unpredictable and we never know what might trigger an episode in him.  Trips in public must always include an exit plan and most of the time two adults.  There have been times while out with Peter on my own that I have relied on complete strangers to help me restrain my son so that he did not harm himself.  There is a unique pain that comes with failing your child in this way.  It’s indescribable.  The guilt is unbearable.  

Though we remain on the CAP waiting list we receive Developmental Therapy services.  Peter’s therapist works within our family on specific goals to help him acquire the skills necessary to live as independently as possible in a world not designed for people with Autism.

After four years of Speech, Occupational, Behavioral therapy, TEACCH, Developmental therapy and special education services our child is thriving.

Let me be clear.  He is thriving BECAUSE he has these supports.

The same supports not covered by my private insurance because Autism is not “habilitative”.  The supports that I would gladly pay for through private insurance were they offered.  The supports I have been forced to access through Medicaid, at taxpayer’s expense, because that is the only option I have to save my child’s life.

The supports that, if removed, could leave our child with no other recourse but institutionalization once we are no longer around to care for him.

The human dignity component of that statement should be enough for anyone to recognize that some changes are necessary in our State.

If it’s not, the financial ramifications of “Everybody’s Boys” (1:91 and growing) filling hospital beds in institutions at the cost of hundreds of thousands of dollars each year, should be.

On Thursday Gus and I spent the morning at the Social Security office.  After an hour and a half computer audit we were informed that Peter would be losing his services because our income is too high.  I work 30 hours a week for a modest salary at a non-profit organization.  My husband has been unemployed since October 2010, after losing his job in the IT sector.

Desperately, I called our private insurance company, hoping that some services would now be covered for Peter.  Again our the answer was no.

This is is absolutely unacceptable.  

Senator Purcell introduced SB 115 last year which would legally require private insurance companies to stop discriminating against children with Autism and cover the services that they desperately need to become and remain active members of our society.

This bill must be passed.  Well over half the states in the union have already passed similar legislation.  This is not an ethical question.  It shouldn’t even be an economic question.  We parents are willing to pay for private insurance for our children.  Imagine the money this would save the Medicaid program, and put into the economy, with families not having to live in self-imposed poverty to get services for their children.

North Carolina is better than this.

Imagine 10 – 15 – 20 years from now when these children when they are living and working independently (or with minimal supports), contributing to society instead of draining resources and languishing in hospitals that offer little quality of life.  All because insurance companies were required to offer them the same standard of care they offer any other individual with a developmental disability.

I implore you to revisit SB 115 and send it to Governor Perdue for ratification.  Please don’t wait.  Our kids can’t wait.  Our economy cannot wait.

On behalf of all the “Everybody’s Boys/Girls” in North Carolina I thank you for your time and your consideration.

Respectfully,

Debby Torres