Day 9 with Takkin

IMG_2901In two months, I will be Takkin’s legal guardian, along with my father. We will be responsible for his medical and financial well-being and safety, among other things. He will not be able to vote, to marry, to open a bank account. He will have several rights taken away; he will be, legally, like a child.

I got the phone call today from the guardian ad litem–the counsel who has been appointed to interview Tak and the people petitioning for guardianship. He’s coming on Thursday to talk to us, and make sure the potential guardians aren’t petitioning for nefarious reasons. Which, trust me, I am not. Takkin’s fortune consists of five cell phones and some two-dollar bills our grandfather gave us.

I don’t want this job. I wish this job didn’t even exist.

There are so many things that need to fall into place for Takkin to have a chance at a stable life, and me gaining guardianship is just one of them. I’ve spent much of my time this past week and a half (and several years, to be honest), trying to put those things in place.

A couple months ago, I spent hours on the phone with one of Takkin’s caseworkers to talk about the long-term solutions and resources for him. The situation is obviously the incredibly complex, bureaucratically speaking. Last December, I took Takkin to see his caseworker so she could conduct what they called a VIDES assessment. This assessment makes him eligible for a DD Waiver, which is the key to him getting any funding or resources from the state of Virginia. You need three criteria to be eligible for a DD Waiver: cognitive impairment, functional impairment, and financial need. Takkin has all three, so he does in fact qualify to get on the waitlist for a DD Waiver. After conducting the assessment, his caseworker added him to the waitlist.

So what does that mean? Once you’re added to the waitlist, there are three priority levels: Priority 3 is for people who need a few community resources but are mostly self-functioning; Priority 2 is for people who need a few more resources; and Priority 1 is for those who need a great deal of support and resources. Because of Takkin’s condition, his financial situation, and his father’s declining health, he is a Priority 1, which is good because it means he is toward the top of the list to get the DD Waiver.

But how does the process work? We have to wait and wait and wait, basically. The agencies don’t even know for a fact when the state starts to release DD Waivers, but the caseworker’s hunch is that it will be in the fall. At that point, a certain number of waivers are released, and the top people on the waitlist go up for review. The caseworker writes an extensive report outlining Takkin’s situation and we hope and pray that the state grants Tak a DD Waiver.

If he does get a DD Waiver, there is an entire other step that follows, which is that the state then determines what TYPE of option within the DD Waiver he receives. There are three options: Building Independence, Family and Individual, and Community Living. With each option comes various levels of support and funding. The best option for Takkin is the Community Living option because this opens the doors for group homes, and the most extensive array of supports and resources. But again, it’s up to the state to make the determination on which option he gets.

So to sum up: first he has to get the DD Waiver, then he has to get the Community Living option. There are obviously many steps and it’s a very bureaucratic process. If he does get the DD Waiver, he also gets Medicaid, and his SSDI monthly income would increase to about $2200. This is the best case scenario.

If the stars align and Takkin gets the DD Waiver and the Community Living option, he could be placed in a group home as early as January. But the real problem (well, there are obviously a lot of “real” problems) is that there are NO facilities in Virginia that can forcibly keep him somewhere. So he will have to voluntarily stay in the group home. This is obviously the biggest hurdle and something we my family and I will have to strategize about if the time comes. It might mean everyone essentially “abandoning” him, and isolating him so he feels he has no other options but to stay at the home. It seems cruel, but it is truly in his best interest in the long run. I know I can do it. I don’t have much faith in my parents. And if he’s given the opportunity to go a group home and squanders it, then he’s back at square one, has to start the process all over again, and likely won’t have access to a group home again for several years. If my parents fall ill or pass away, and he isn’t in a group home, he will have to go to a shelter. And if you know me at all, you know I’d never ever let that happen. You can guess what WOULD happen then…

These are the things I think about at night when I’m laying in the dark. DD Waivers, and group homes, and Priority 1 designations. Court hearings to gain responsibility over another being’s life, and caseworkers, and medications. These are the things that play on the screen in my mind’s eye, the things I see when I look at him. Hurdles and challenges and endless mountains to climb.

I often think about the movie “Love, Actually.” Not because I like it, it’s actually hot garbage. But because of Laura Linney’s character. Throughout the movie she is always getting phone calls and she drops everything to answer them, but the audience doesn’t know who she’s talking to. Right when she’s about to make out with the love of her life, a guy she’s dreamed about for years, her phone rings; she answers it, then has to get up and leave. And all is lost between her and the love interest. What you come to realize is that all the calls are from her mentally ill brother. She is shackled to him. And her life revolves around his. I used to watch that movie and feel nauseous when she’d come on the screen, and get angry because WHY WOULDN’T SHE JUST CALL HER BROTHER BACK? Why did she give up on everything for him?

I don’t want to be Laura Linney, guys. I can’t be Laura Linney.

This evening Tak and I went to the park to throw a ball around because he was getting antsy and wanted to get out of the house. It was raining, but I obliged. We walked down a path to a little playground, and it was nice because no one was out and his shoulders dropped a bit and his eyes weren’t constantly darting around to see if people were coming by. We meandered down the path, threw the ball around, chucked some sticks into the woods. It was really only misting, and it felt cool and soothing against my skin and I was able to relax a bit too. For the first time in nine days–for the first time in more than two decades–I remembered what it was like to have a little brother: someone to laugh and joke with, someone to complain about mom and dad with, someone to stand in the rain with… as brother and sister… as adults… as equals.

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