Losing Our ADHD Respite Services

As I’ve mentioned before in my ADHD parenting blog, our family receives services through a Children’s Mental Health Waiver. The services are designed to help Natalie and the rest of us cope with her ADHD.

When we applied for the waiver, our primary need was for respite — regular breaks from high-alert parenting, and perhaps most important of all, time to spend with our non-ADHD son.

There were a couple of routes we could take to receive respite. The easiest to arrange would have been to send Natalie to a residential treatment facility one weekend a month. I couldn’t do that. She’s a baby! She’s 8 years old! I’d rather end up on the psychiatric unit myself than to hand her over to strangers in a setting like that.

The other choice was to find individual providers on our own, and have an agency hire them and administer the waiver dollars. The agency wouldn’t find providers for us — they can’t find enough people to staff their own programs. So this means recruiting friends and family, or advertising and interviewing candidates on our own.

We started out by hand-picking a couple of people Natalie already knew and loved, and asking them to take on this commitment. My sister Ann, Natalie’s aunt, was one of them. A favorite teacher at daycare, Allie, was the other.

When I asked them to sign up to provide respite, I didn’t realize just how much I was asking of them. There is a lot of training required. They aren’t paid for their time for training, and they aren’t reimbursed for their expenses. The hourly rate they are paid is less than I pay babysitters, so there’s little financial incentive. When I asked them to do this, I thought the hourly pay was much higher. It turns out the agency administering the program takes a good chunk of it (in return for losing paperwork, forgetting to send training materials, not returning phone calls, changing staff 3 times in 18 months…).

We lost Allie as a provider after just a few months because she wasn’t able to renew her first aid certification by the deadline. She’s a college student, was working at a daycare center, and was preparing to student teach. Meeting the training requirements — on her own time, at her own expense — was simply more than she could possibly do.

I just found out that we’ll be losing our only other provider, my sister Ann, in June.

Ann called me the other day to tell me that the state has added another requirement — Mandt training. Mandt is a system for safely restraining aggressive people. She’s had the training before, but her certification has expired. I had it too, years ago, when I worked in residential treatment for emotionally disturbed kids. And I use it with Natalie when she’s out of control, to keep her safe, and to keep her from destroying things around her. So, I can see why the powers-that-be would think it’s a good idea for providers to have this training.

The problem is that the training takes two full days, and is only offered in a few cities around the state. Ann would have to pay for the training herself, take two unpaid days off work, travel out of town, and stay overnight at her own expense. And remember, she wouldn’t be paid for her time to take the training. That’s too much to ask of anyone. Too much to ask even of a family member.

So, I’m afraid our only option will be to give up our services. And if we have to give up respite, how many other families in the state will find themselves in the same situation?

Happy freakin’ New Year to you, too, Iowa. Thanks for nothing.