What Happened When I Took My Disabled Daughter Off Our Private Insurance

It wasn’t good. I might as well tell you the end of the story now, otherwise you won’t be able to focus your reading on what I have to say. 

I know that you are already saying, “What was she thinking?”

I was thinking my daughter had insurance through three policies. She had private insurance through my husband’s employer, CA coverage (state), and Medi-Cal. I figured she was over insured.

The private insurance denied everything anyway; wheelchairs, monthly infusions, therapy, home care, orphan drug, so why pay for the policy? I knew they paid the minimum on doctor visits and I figured, if they don’t cover what she needs, why continue to pay? The state of California picked up the majority of the expenses anyway.

She is over 18 years old. I thought the more financially independent she was, the more likely she was to receive the benefits she needs to care for her disability.

So I took her off. It was going to save us $1200 a year.

I was wrong.

Without the private insurance, the first challenge arose quickly. At 18, she wanted to see an internist rather than a pediatrician (and the pediatrician wouldn’t take her without the private insurance). I got a list of practitioners who took Medi-Cal and started calling. When I started calling, I was looking for a doctor who specializes in Rare Disease. When I finished calling I was looking for anyone to take her. I called one after another to find out that although they do take Medi-Cal patients, they had already reached their limit. I found one doctor who would see my daughter. One. She was a general practitioner who looked like she graduated the day before I called her office.

How would a relatively new doctor ever begin to understand the needs of a disabled adult who receives 24/7 care, monthly infusions, an orphan drug, requires nursing care and so many other services? With each one of these needs, there are forms and follow up. I would bet my daughter has more forms and follow up than any other patient in her practice.

The next challenge came when I called to get the monthly refill of her orphan drug. I was told that the co-pay was going to be $2500. Last month it had been $0.

Then the monthly IV infusion came around. We could get the IV bags, but nursing care wouldn’t be covered. Who would start the IV?

You can imagine as soon as open enrollment started, we enrolled her. She’s back on our plan and I have learned. The state and federal programs cover what she needs, but without the private insurance, she wouldn’t have access to the care.

What happens when she’s 26?