When it comes to healthcare reform, I want to make sure that legislators consider what is important to families, especially those like mine that have a child with special medical needs. When I think of healthcare reform for my family certain elements come to mind: access, choice, quality, and coverage.

Choice is particularly important to me because my oldest son, Peter, is followed by at least eight different pediatric specialists. I want to choose the doctor that is part of his medical team. I also want to base that decision on the physician’s experience level and quality of care, not whether that doctor is accessible through an insurance network. If a second or third opinion is needed, I want to seek that opinion unencumbered.

Peter qualifies for our state’s CHIP program based on medical need, and he has private insurance through my husband.  We pay annual premiums for both policies but still incur thousands of dollars in out-of-pocket expenses due to high deductibles and lack of coverage for things like prosthetics, prescriptions, and medical equipment. We pay, for example, out-of-pocket for Peter’s prosthetic ear.

The anaplastologist we choose to make Peter’s ear does not participate with any private or state insurance networks.  Consequently, the state will not pay for any portion of the prosthetic and our private insurance, although offering partial coverage, applies the amount toward our out-of-network deductible. I challenge anyone reading this to locate an in-network provider for an ear prosthetic! Sadly, the most disturbing issue to me is not the coverage but the choice.  If we, instead, would choose for Peter to have ear reconstruction surgery both policies would likely cover 100% of the cost because we would use an in-network and in-state provider.

From a purely business standpoint this makes no sense as the multiple surgeries required for ear reconstruction would easily total more than the prosthetic.  Also, the trauma and pain resulting from 4-6 surgeries for what would likely be mediocre results, is an option that I am not willing to choose no matter what the cost. In Peter’s case, the ear is not purely cosmetic as it serves the function of holding up his glasses, thus, it is medically necessary.  The social benefit, I think most would agree, is quite obvious.

Choice, therefore, is an essential element for consideration in children’s healthcare reform.  As parents, we must be able to choose the best providers for our kids, not based on a price but instead based on our decision making and level of comfort. We must be able to choose who makes a diagnosis, who performs a surgery, who prescribes and manages medications, where our kids receive therapy, and where our kids receive physicals and vaccinations. We must be allowed to make these decisions without bureaucracy and policies dictating the choice for us and for our kids.

Because choice in pediatric healthcare matters so much to me, I have chosen to participate in the national “Speak Now for Kids in Health Reform” campaign. This campaign is led by the National Association of Children’s Hospitals and other pediatric groups that believe children’s issues must be addressed in healthcare reform. There is a real risk that children’s needs could get crowded out by adult concerns since they represent just 10 percent of healthcare spending and only 25 percent of the population.  From where I sit children are 100 percent of the future, and we would be foolish to change healthcare without considering their needs.

Please join me to promote the needs of children as legislators negotiate healthcare reform. Visit www.speaknowforkids.org to show your support and share your story.