Medicaid Needs to Do Better for Rare Patients and Families

I recently took my 3 children to their pediatrician for the last time before our new insurance kicked in at the beginning of the year. Unfortunately, because of circumstances with money, our hospital was no longer accepting the majority of New Jersey Medicaid health maintenance organizations (HMOs). I'm sure there's more to the story, but honestly, I don't care. This wasn't my (or other parents') fault, and it affected my son greatly; that's all that matters to me.  

Fortunately, we could switch to the one HMO the hospital managed to work something out with so my oldest child (who has a rare disease) could continue to receive his care. However, it forced my other 2 kids to leave the pediatrician they grew up seeing. I also had to switch the majority of my doctors. This caused a lot of added stress for all of us.

Navigating Medicaid

Navigating the complex system of Medicaid can be frustrating for any caregiver, parent, or patient. However, for those of us raising children with rare or ultra-rare diseases or special needs, or if we are living with a rare disease ourselves, we deal with larger issues.

Medicaid isn't easy for anyone, but unless you live a rare life, you will not understand the challenges we face. Shifting doctors and repeating your story despite 100-plus pages of medical records gets old. Fast.

How inconsistency affects patients and caregivers

Just as we get used to something, something else changes. Yes, that's life. However, in the rare world, it happens more often than not. Caregivers suffer, but so do patients. Their world is flipped upside down. Children who are non-verbal, like my son, don't always have the ability to understand what is going on, and it can be quite traumatic for these kids.

Switching doctors or hospitals can also lead to losing crucial medical history and continuity of care. Each physician change means you start over again, often repeating tests, explaining yourself a thousand times, and trying to educate the professionals on a rare disease you're sick of having to be the expert on. This adds another layer of frustration; it just shouldn't be this hard.

Forced to build a new care team

Effective and specialized care is crucial for rare disease patients and families to move forward. We spent years searching for physicians who understood my son – ones who truly listened to us, cared for us, and, most importantly, fought for us. We should never have to leave them. We should be locked in for life, but instead, we're forced to constantly readjust and do the work on our own to find a new care team.

Parents can get lost and shut down because Medicaid's website is a joke. We spend hours searching the internet, making phone calls, sitting on hold, and getting nowhere with the system. We could be spending this time giving our children the one-on-one support and therapies they deserve. However, because of the limited providers accepting our Medicaid HMO, we are forced to do the work that should already be done for us.

Navigating Medicaid takes an emotional toll

Parents and caregivers often deal with many emotional battles when it comes to directing their child's medical care. Searching for new care teams, building relationships, and wondering when things will change again is exhausting. Medicaid needs to do better and find a way to understand the battles and challenges that rare families face.

No system will ever be perfect, but it is truly unfortunate how far down the hill the Medicaid system has gone. Yes, it would be easier to have commercial insurance. But not all rare families can afford it. Sometimes, Medicaid is our only option. In my opinion, there needs to be a rare category for Medicaid qualifications. We should be able to receive the care we deserve.

Do you have experience with the Medicaid system? We want to hear about it. Share with the community in the comments below.