Medicaid Madness

Is there a veil of secrecy purposely draped over Medicaid? 

I believe the government-run bureaucracy delights in making things as complicated as possible. It’s like trying to translate hieroglyphics wearing a blindfold and using a broken calculator. Need to know if a specific service is covered? Good luck navigating through a maze of automated phone menus, hang ups, conflicting websites, and unhelpful employees who seem to have all graduated from the School of That’s Not My Department. I have looked at countless websites and read numerous brochures and PDFs to the point that my eyes have glazed over. The lack of transparency and clear communication from Medicaid only adds insult to injury. After 3 days of grappling for even the most basic information that should be readily available and no returned calls; I waved my white flag, gave up, and emailed 2 State Senators.

There is a myriad of waivers and programs that cover specific services, some that cover several of the same services and are coupled with varying eligibility requirements. With the IDD Community Support Program, a qualifying individual must be over the age of 18. OH!, the Elderly and Disabled (E&D) Waiver has a minimum age of 21. Yes, the Traumatic Brain Injury/Spiral Cord Injury (TBI/SCI) Waiver covers vehicle modifications, however, your daughter doesn’t qualify because her brain injury was “not a blow to the head as a result of a car accident or beating”. (Yes, I put that in quotes because that is verbatim what the lady said.) Sure, you can apply for the Katie Beckett Program but just know that your daughter will no longer be able to receive SSI benefits. Yes, we have in-home nursing respite care through the Mississippi Family Caregiver Support Program. This program supports individuals who are providing care for a family member age 60 or older or if you are age 60 or older and caring for a child in your family who is under age 18.

I have been taking notes and keeping up with the who and what and the no they won’t in hopes it could help someone else navigate this nonsense. As soon as I get answers to my questions, I will probably make it a blog post or share the document. Utter ridiculousness.

My questions.....What IS available for disabled children under the age of 18 for respite care? Why can you be a paid caregiver of someone who is an adult but not if they are underage? Quite frankly, it seems discriminatory but not one person could offer a reason why or justify the eligibility requirements. I am so tired of banging my head against the wall. I had to give up before I ended up with a TBI and qualified for the waiver myself.

I mean absolutely no disrespect for those who qualify for these waivers or programs. They deserve it. I just don’t understand how one type of disability gets you certain things but someone else with a different type of disability does not qualify. I figure it is not illegal or it wouldn't be happening, but TELL ME WHY! One type of disability should not be considered more deserving or in need of support than another. Every individual with a disability has unique challenges and needs that must be addressed with equal consideration!