Today I have had it. I am done…. but can I really be done? I am so tiered of navigating the broken system of services. Don’t get me wrong, I am grateful for many of the benefits and services Lyra has access to through Medicaid. Lyra qualifies for Medicaid through a waiver program. This means that they waive the income requirement to qualify. It is solely based on her disabilities. Medicaid covers costs related to Lyra’s medical care that our primary insurance does not (such as co-pays, deductibles, etc). Also, I am a paid caregiver for Lyra through Medicaid. I have my Certified Nursing Assistant (CNA) license, and I am held to the same standard as any other CNA in the state. The difference is, my only patient is Lyra. 

This sounds amazing, right? It is…. but there are a lot of other services Lyra qualifies for that Medicaid has made it nearly impossible to access. The first is respite care. Respite care is critical for families like ours. We need breaks. We need time to rest and regroup. Finding quality child care for any child is challenging. Finding it for a special needs child, especially one that requires medical intervention, is impossible. In the 5 years we have had access to this benefit, we have successfully only hired 3 people: My mother, a college student, and a high school senior. The college student lasted for about 18 months before life took her other directions. The high school senior lasted less than 6 months. I have tried to find more people, but they just don’t want to jump through the hoops that Medicaid makes them jump through. Plus, the rate that Medicaid pays less than our local fast food places. I am not the only one who struggles with this. It is a constant discussion topic in support groups.

What was the resource I am trying to get access to that sent me over the edge today? Oh, that would be home modifications. You see, people with special needs often need their homes modified to give them access to place, or to keep safe. This can be things like ramps in entry ways, stair lifts, and zero entry showers. It can also look like the custom wood gates I had built on our stairs so that I can contain Lyra. Right now, we need to remodel our kitchen to restrict her access. We have a temporary solution right now, but it’s not great and it won’t last as she gets older. To apply for the money allocated to Lyra for home modifications through Medicaid, there are a number of hoops I have to jump through. There is the 19 page document I had to go through and try to find all the sections that I needed to fill out. I then have to get it reviewed by Lyra’s occupational therapist and case manager before it is even submitted to Medicaid.

Also, I need to get quotes from Medicaid approved contractors. This is the part that broke me today. Now, I have worked with an approved contractor in the past, but Medicaid recently changed the hoops they have to jump through, and he is not longer approved. So, Lyra’s case manager sent me a list of 12 contractors for the whole state. So far, I’ve gotten a hold of 2 on the list, one of them is actually from Maryland and doesn’t do work in Colorado. The other MIGHT reach out next week to see if he has time to look into the project. The rest of the contractors on the list either don’t do the work I need done, don’t work in my area, or don’t have so much as a Facebook page (let alone an actual website I can look up). In fact, I can’t even find reviews on their work anywhere online. Also, for many of them, their addresses and/or phone numbers don’t match what is listed on the Medicaid website. I just… I give up… for today. I have spent all week working on this. 

I just wish we could actually access the services that Lyra qualifies for without it being such a battle. I wish the system wasn’t so broken and impossible to work within. I wish that everything wasn’t a battle. It’s a full time job, and today I am just exhausted.