Hello,

Thank you for the opportunity to comment.  

My husband and I have a terminally ill child who has a rare metabolic disorder.   During her first year of life, we endured countless medical test trying to find a diagnosis and cure for her.   We incurred $9,000 of medical bills her first year of life due to insurance not covering these tests and procedures given that she didn't have a diagnosis.  We finally got the diagnosis when she was 11 mths old - and was able to finally get her on Medicaid to help with the out of pocket expenses.   Even with a primary and secondary insurnance (Medicaid), we still are responsible for a significant portion of her medical care costs. Currently, I am using her HIPP reimbursement to pay for care that alllows me to work full time to maintain her health insurance.    Her EDCD waiver funds do not cover this expense in its entirety. 

Also, please understand that not every employer has a multi-tiered insurance plan.  For example, if enroll anyone other than myself, I must go into the family plan.   The state argument that most families would not drop their special needs child from their insurance is not a fair statement.   Actually, I could do that and make Medicaid her primary insurer.  This would in turn also lower my employers experience ratings (and then in turn lower MY health insurance premiums) which would be beneficial to me. 

The amount of reimbursment that we recieve each month doesn't equal 10% of her "normal" medical expenses, much less if she has an hospitalization at CHKD.   Please reconsider this decision on a case by case basis and look at the insurance options available to the parents before you make these blanket choices.   Thank you.