Table 2 Additional illustrative quotes

Obtaining insurance

When we tried to get Medicaid, there are literally hoops that you have to jump through to get them into a Medicaid program, at least in the state of Texas. So, you could either go down to the waiting list that took X number of years – I mean, we’re still on some of these other lists, and she was diagnosed four years ago, so a lot of these lists are, you know, 10, 12, 15 years long, for waiting lists… But you can try the Writer 28, and you have to meet at least two criteria. (MLD, TX)

Obtaining insurance

There was another mom that had just, on the advice of a doctor, had moved from Arkansas to Texas because of the Medicaid benefits. (MLD, TX)

Interacting with insurance company representatives

If you’re trying to manage – you have other children and you work and you’re trying to keep a household and what not, it’s hard to sit on the phone for 30 min waiting for someone to help you, and then, you may get redirected five times. (SMA, CA)

Accessing care

For her, you might need a drug that is proven for cystic fibrosis, but we know for a fact that she has some of the same lung issues, but we may not be able to get the insurance to cover that equipment or that drug because we don't have the background that says, "Oh yeah, they will work for MLD too." (MLD, MN)

Accessing care

When we need things, we've not really had any pushback on them saying, “No, you know you all don't get that.” But I don't feel like we've really asked for crazy things that aren't necessary either. (SMA, TX)

Accessing care: disputes

So we were under the impression that we were being covered, but we weren’t, because our insurance company had a cap we were never made aware of [despite prior inquiries], and therefore, I fought very long to get over $3,000 worth of physical therapy appointments covered by the hospital. (SMA, TX)

Financial assistance

Another device that was not covered is an Eye Gaze communication device was not covered by insurance, and thankfully, the school system provided that for my son while he was in preschool and not physically attending a school yet. So, if we had lived in a county or a district that was unable to do that, we would still not have a way for our son to communicate with us in an understandable way for everyone else. (SMA, MD)

Individual factors

I’m not sure about things like PT and OT, and the reason I don’t know about that right now is because her PT and OT needs currently are covered by our state’s early intervention program, and so, there is no cap for those, so I don’t know. When she reaches the age of three, that may become more of an issue for us. (SMA, TN)

Individual factors: emotional factors

She has a genetic disease– we didn’t know, we didn’t anticipate it, it’s not something that happened because of malpractice or because of negligence or anything. But I certainly want everybody to be able to take care of their kids, their sick kids, as well as we can. (SMA, IL)

Individual factors: emotional factors

It goes back to walking around in somebody else's shoes and trying to figure it out. It is not like we are trying to take advantage of anybody when we have kids with rare genetic illnesses. It is very difficult. (MLD, MN)