Tuesday, August 20, 2013

Losing It

Ashley and I have faced a lot of challenges this summer, but the biggest challenge of all has been the parade of aides through our house and our lives.

At the end of last year, Ashley finally got a slot on our state's Medicaid DD (Developmentally Disabled) waiver. The waiver provides services for Ashley that she hasn't been able to access in the past - things like home environmental modifications, day support programs, employment assistance, and assistive technology. Prior to getting the DD Waiver slot, Ashley did have a few services through another waiver but just not as many as the DD Waiver provides. So, we were excited to get the slot. But that excitement has waned a bit.

Prior to the DD Waiver, Ashley did qualify for the services of an in-home aide. I was able to hire the aides, and with the assistance of another Medicaid program, was able to pay those aides $15 an hour if they knew sign language. It was still tough to find people who knew sign language, but the hourly rate (an increase from the $8.87 paid normally for an aide) did help. Aides provided by the DD Waiver, however, can't benefit from that $15 an hour rate. I use an agency to provide aides, and the agency pays $10 an hour (still a slight increase over the $8.87). Even $10 an hour, though, does not seem to buy the services of anyone who knows sign language.

And to complicate things further, I was told if I didn't use the aides on the DD Waiver, Ashley might lose her slot totally. So, I can no longer find my own aides and get the $15 an hour rate.

What all this has meant to Ashley is that she spends her days with people who have no idea how to communicate with her, people that stare at her blankly when she tries signing her needs and wants to them. Here's an example from last week - Ashley wanted some toast with butter. She tried signing it and the aide didn't understand. Ashley then got up, went into the kitchen, opened the refrigerator door, and reached for the butter. The aide moved between Ashley and the butter, and kept telling Ashley no. Ashley kept signing, and finally started signing that she was angry and frustrated. Still the aide had no clue what Ashley was trying to say, and Ashley then bit down on her lip really hard causing it to bleed profusely. Ashley got her point across finally but at the cost of an injury.

Anyone who has witnessed a similar situation can probably predict what will happen with Ashley if that becomes a permanent situation. She will regress and stop using her sign language, and she will revert to using behavior to communicate. With enough years of that, and I am worried about her adult years when she will potentially spend the majority of her time with people who cannot sign, she will retreat inside herself and lose all interest in life. I've spent 16 years drawing her out of that inner world, and it breaks my heart to think she will return to it.

I'm not sure how to remedy this situation. At least Ashley will start school soon and will have the appropriate sign language support for most of her day. But I have to get this resolved before Ashley graduates. I don't know where to start, but I will start asking around to see what I can find. If any of you have dealt with a similar issue, I would love to hear your feedback.


mamikaze said...

How awful! Our psych said to put ads up in a local community college or high school that has programs for the skills you want to hire. I hope that a person will come along soon that will bond and "click" with her.

Jaimie said...

Mamikaze's idea is great - I'd just add, put the fliers up on the bulletin boards of the education buildings :)

Sammie said...

I totally understand your challenge of finding aids that sign. My son who is deaf and also has brain damage and qualified for services through DD, we also had the same problems. The whole pay issue makes me crazy too. To find people who can sign and also want to work with this population is hard. Paying enough would help a lot.
My son is now in a group home and its also a constant battle to find staff who sign for the group home. I have also had lots of people in the DD system who want to lump being deaf, in with nonverbal. My kid is not "non verbal" he signs quite well and has a language, but they are used do kids who are lower functioning with out language or deaf who never learned to sign. I just wanted to chime in to say I understand your challenges.