On the Donald, Medicaid Waivers and What I’m Concerned About

I’ll not sugar coat it – it’s been a difficult month. I’d like to press forward, figure things out and move on. But it’s not always that easy. Sometimes we are made to remember, to note it, to mark it down and to remember that which we’d rather not talk about.

Case in point: the fight to get a medicaid waiver.

I had our monthly visit with D’s caseworker for his ID (intellectual disability) waiver today – he is on the wait list for this waiver, which would help get him more care giving support and a host of other things to help facilitate his living in his own home with his family.

D’s been on the wait list for several years, in an “urgent” position due to some of the major challenges he has. Others have languished on the wait list for much longer. It’s a complicated system for someone to get a waiver, with the waiting list being in the thousands (nearly 10,000 on the wait list for intellectual disability or developmental disability waivers) in the state of Virginia, and only a handful of slots open up every year.

So how does one get off the waiting list and get a waiver? The caseworkers and state employees who assess these things look at several things: the severity of the disability, the situation of the family (single parent? health of parent(s)? age of parent(s)?), the home environment, how important is the waiver to helping one live in the community versus being thrown in a group home or a hospital, as well as a bunch of other things.

And here’s the thing. Here’s the THING. We, as humans, are basically programmed to present the best in our lives. Who wants to focus on what’s hard and difficult with the outside world? Let’s present our best selves to each other. Sure, we try and keep things honest and real, but for the most part, people don’t go around exposing wounds to each other. But if your loved one is to receive the support they deserve, then you have to present the worst of it. You have to open up all those dark doors to those dark places and expose it.

You have to not do what your Mamma taught you – look for the positive, be strong. You have to show the truth that you wish you could just keep private between your loved one and yourself.

Every month I keep notes on everything that has been hard. Then every month I tell D’s case worker. Because he deserves the proper supports to live a full life, as independently as possible. I put aside the mantra of “we got this,” which is instrumental to living this life with happiness and dignity, and I tell all the truths. Every last, hard, difficult, soul-crushing one of them.

I tweeted an article today, written by a colleague of mine, taking the Donald to task for his latest ridiculous statements. A few trolls tweeted back at me – Do you agree that Shariah law should NEVER be instituted in the United States? Or — “Watch this,” along with a Youtube link to some fiery and hateful Muslim cleric.

I’m tired. Really, I am. You know what I’m concerned about? Medicaid waivers. Autism. The health of my family. How to stop D from picking at his skin all the time. How to protect him from hurting himself. Figuring out how to help him shave. Helping my daughter through tween/teen middle school angst. Trying to stay ahead of her in the social media game. Protecting her from online predators. Saving for our kids’ futures. Finding a good team of caregivers and therapists to help support D and help him achieve the most fulfilled and independent life possible. Hitting my goals at work. Finding time to maintain a good relationship with my husband. My own health. Dropping ten pounds.

And yeah, my rights to practice my religion freely and peacefully.

But today, mainly medicaid waivers.

But no one seems to want to hear that.

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