Letter to My Legislators

Representative Nowlin and Senator Long,

I am writing to seek your advice about a critical need for families with disabled children in Louisiana.

Recently, my twin boys, both born with spina bifida, the most common permanently disabling birth defect, were denied LA Medicaid coverage. Although we are participating in the appeal process, this letter is not about my family as much as it is about other families in the same situation.

My husband and I are both working people with good, stable jobs, despite the current economic uncertainty in our state. We clearly do not qualify for the standard healthcare coverage through LA Medicaid for children, since that is a need-based program. However, for one year, we did qualify for a supplemental plan for families of children with disabilities with higher incomes, called the Family Opportunity Act. Typically, this is a buy-in program with a small monthly premium.

When we learned we were being denied this coverage for the upcoming year, I was disappointed but not surprised. Even supplementary LA Medicaid has a maximum allowed income for the family, even a family with disabled children. This came as a shock to our friends and family all over the state. Everyone we talked to had always just assumed kids with a permanent disability automatically qualified for some form of LA Medicaid. I decided that even if our family never receives these benefits, I needed to speak up for other families with the same desperate need for help with medical costs relating to their child's medical disability.

First, let me assure you that the last thing on our minds is a handout from the government. What I am referring to is a need for assistance due to a child's devastating medical condition. Many of these children (like our own) were disabled from birth, so they would never qualify for private supplemental insurance due to a pre-existing condition. And I also know that over half of the children in Louisiana have some sort of Medicaid coverage, which is a high percentage and is incredibly expensive for our state.

Some other states offer automatic Medicaid qualification for disabled children (at least as a supplement to private insurance), and I'm sure this is partly because their populations are not as needy as Louisiana families. The message that we are getting from the Medicaid program is "You would be better off to just quit working and get full Medicaid coverage for your kids." This can't possibly be the kind of message we need to be sending to families in Louisiana.

What I am asking is that we recognize families like ours, who, although they have adequate income, are desperately trying to cover co-payments for visits to multiple medical specialists, expensive medical equipment denied by private insurance (like wheelchairs and other assistive devices), high co-payments for daily prescription medications, co-payments for lifetime weekly physical therapy sessions, co-payments for recurring medical needs like catheters and nebulizer supplies, and the list goes on and on. They are faced with the decision no parent ever wants to make -- whether or not they can afford to give their children the medical care the doctors say they greatly need.

I know writing a new bill is a long process and might not appear to be fiscally responsible, considering the costs involved with insuring even more families in the state, but this is an ethical issue that I feel must be considered. In the words of Hubert Humphrey, ". . . the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped.”

I would welcome any advice you can offer about how I should proceed, because I will certainly keep persevering to shed light on this critical issue. Thank you for taking the time to consider my cry for help on behalf of all the disabled children in Louisiana and their families.

Sincerely,
Mariann Wilson