How about a good rant today?

Let me begin by reminding you that I’ve been a long-time care giver and have over the years provided care for a number of family members. Since January 9, 2000, 4:00 a.m. (I just remember the time since that was when she arrived at our home following her whirlwind trip from Helena, Montana – long story), I’ve been taking care of my developmentally disabled sister-in-law, Elisabeth, or as we call her, Beth.

Beth

Beth has been and is a tremendous blessing to our family and household. She has a great sense of humor and loves to carry on both sides of a conversation. To listen to her go on and on with herself about who’s getting in trouble (she absolutely loves it when someone else is in the “hot seat”) or who is going to be in trouble is quite an irresistible eavesdrop.

She knows and accepts the fact that part of my “job,” the reason I get paid the big bucks, is to be a pest to her.

All this is to say that this rant has absolutely nothing to do with whether Beth is to be in our home or not. She is to be here. We love her. She will be here with Carrie and me no matter what. This is Beth’s home. Period.

Rather, this rant is about the Washington State Department of Social and Health “Services” (DSHS) and specifically their Division of Developmental Disabilities (DDD). This rant is about the unbelievable extent of UP to which it is SCREWED! I know, you may have to read that sentence a couple times, but I try not to use dangling prepositions. Another way of saying it would be: WS DSHS DDD! What a bunch of…______!

Here’s my beef, its history and then some.

I used to write housing grants to the State of Washington for a non-profit community housing development organization. We developed community housing for folks with developmental disabilities.

Years ago, the majority of folks with developmental disabilities were housed at great expense ($350 to $400 per day per person) to the State in institutions such as Fircrest School and Rainier School. These places were in effect warehouses for folks that made society uncomfortable.

Back in the late eighties a move began to downsize and in many cases close these institutions in favor of “community-based” housing, i.e., moving these men and women out into the community. Wow! What a concept!

This model of housing was the one for which I was involved in writing grants. A non-profit agency would own and maintain a house for which 3 to 4 DD residents together would pay rent. Typically, another agency would staff the house with 24/7/365 care providers who would assist the residents in their Activities of Daily Living (ADL). This was far less expensive for the State (about $150 per day per person).

Now, along the way, there were some families that were willing and able to take care of their DD family members at home. Certainly, these DD family members were often enrolled in the the state system so they could receive necessary services (e.g., medical, dental, etc.), but where their daily care and housing needs were concerned, the families were the providers – at NO expense to the State.

At some point, those who were staying home to take care of their adult DD family members for free managed to convince the State that, hey, we could use a little help here and the State gave them some hours. Wow! Thank you State! That helps.

Now, of course, when I say, “some hours,” you have to realize (in case you haven’t done this calculation recently) that in each and every month there are 730 hours. Of those, about 173 are typically allocated to the work month ((52 weeks * 40 hours) / 12 months = 173.33 hours).

I’m not just sure out of which deep dark hole the State managed to fish their formula for calculating “some hours,” but when Beth first entered the state system, it was determined that I would receive 146 hours per month to see to her care (we won’t even get into the rate per hour, although it was a little better than the minimum wage).

Maybe I’m simply not as smart as the average state bureaucrat, but it seems to me that if I were the State and I had parents and other family members who were willing, able, even desirous of keeping their DD family members at home on a long-term (lifetime) basis, thereby hugely reducing the cost to the State, that I would want to treat those folks as a real asset and help to facilitate their being able to continue doing so. But alas, that would involve using a whole thimble-full of common sense.

Annually, DDD sends their representative to my house to do a “care assessment.” We get to spend an hour or better dumping my answers to their questions into her laptop. Believe me when I say that this “care assessment” has absolutely nothing to do with the “care.” It has only to do with discovering how many of the hours previously given can now be taken away.

They consistently whittle away at the total although nothing significant has changed with Beth and her level of need since the day she walked through our door. This year, “some hours” went from 133 per month to 88. I guess if I take good enough care of her so that her condition doesn’t get any worse, that means I should need fewer hours.

At the very top of Beth’s new Individual Support Plan are the following words:

“Needs supervision at all times.”

So DDD is telling me that although I MUST be available “at all times,” they are reducing my already meager number of hours by 34 percent simply because I don’t have to bathe and dress my “client”?

Hellooooooooow?

If I, or some other family member has to be with Beth “at all times,” when was it, DDD, that you said we could work at the new jobs we’re going to find in order to make up for the hours you just slashed from our household’s income? Please let me know so I can apprise my new employer of the times I’ll be available!

And don’t you dare talk to me about which of Beth’s ADLs she doesn’t need help with! I’ve got to be here, either to tie her shoes or to make sure she does it. Same number of hours! Who are the Wizards of Smart that come up with these intensely intelligent money saving schemes? I’d love their addresses so I could deliver my “client” to their doorsteps and let them give this a whirl for a month. I’d be deliriously curious how it’s working out for them.

Long, slow, deep breath. Now exhale. Do it again. There.

When I started this post, I made a promise to myself that I would not make use of the word “morons,” even though it’s one of my favorite and most appropriate words when it comes to any discussion of WS DSHS DDD. And so…I…just…won’t.

You’re in Boardman Country!

Make yourself at home…unless you’re from DDD,

Brad
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