My Name is Sarah

MY NAME IS SARAH. I am a quilt designer and the sewcial director of Sarah's Sewcial Lounge. I also have a business called Down Right Charming. I sell my quilts mostly on etsy and I make pillowcases to donate to patients in the hospital in memory of my friend Kristen Kirton. I am a young adult living with Down syndrome. I hope you enjoy reading about my life journey.

Thursday, July 9, 2009

Is Ohio Finally catching Up ?

As I was rushing out of the grocery store today, this headline caught my attention: State Drops term 'Mental Retardation.' It is in a newspaper that I do not subscribe to, so I plopped two quarters down on the counter and ran out to my car. Although in a hurry, I had to read the article before driving off.

A little background info: the state of Ohio still operates with 88 County Boards of Mental Retardation and Developmental Disabilities-one for each county in Ohio. All Boards receive state funding and most get additional monies coming in from county property taxes. The fact is most states have already changed their terminology. Ohio is one of only 10 states still using 'mental retardation.'

I've written before that we had excellent Early Intervention services from this entity from birth to age 3. We then received nothing for many years, as the local school district provided services.

I began exploring adult services as Sarah's 18th birthday approached. I discovered that the County Boards of MR/DD control virtually all adult services including the administration of Medicaid Waiver 1 monies and I/O waivers that pay for living expenses. So I said, "Sign us up." Whoa not so fast I soon realized. We fought tooth and nail to get Sarah approved. What finally did it? An IQ test administered by the school psychologist that determined Sarah was in the range officially known as "mild mental retardation." I was fine with that.

Then I found out that did not mean she would get services, just that she was now approved to get put on waiting lists. And so we wait.

About three months ago I realized that funds were going to be tight to send Sarah to the residential summer camp that she has been attending since she was seven. It is the one week out of the year that my husband and I have respite. The one week that we can be alone as husband and wife or go someplace with our boys and not have to worry about breathing equipment, suction machines, IV lines and suppositories. So I called our SA (support administrator aka case manager) to inquire about funds. I was told that with all the budget cuts there is no money. Period.

I am a 49 year old mother of a soon to be 20 year old young adult with Down syndrome. I have lived with the term mental retardation all of Sarah's life. As a professional, medical term it has never bothered me. In a degrading, school yard bulling sense, absolutely. So today, as I read this article I am torn. So torn. Is this the time?

Ohio is broke. That is a fact. We are about to enter emergency status on our biennial budget. Yet today our Governor, Ted Strickland(D), signed this unfunded mandate into law. So I ask, is it better to get what little $$$ we have into the hands of those who need the services, or into changing building signs, letterhead, bus decals, brochures and marketing materials? What do you think?

To read the full article as well as comments posted by readers click here.

8 comments:

Tara said...

Yikes! That's a very good point. I can live with the term "retardation" in a medical sense, as well. Just give me the services my son needs!

Lisa said...

That is exactly what I thought when I read the article...as I continue to see Help Me Grow workers lose their jobs and all the consequences of these budget cuts to the kids and families who need services the most, I wonder why we are spending money right now on changing signs, stationary, etc.

Perplexing Situation said...

I continue to say...our society has its priorities in a blender...they are just all mixed up. It's very sad indeed.

Debbie Yost said...

I agree. Mental retardation in the medical sense does not bother me. I get tired of all the renaming of things. Especially if it wastes much needed money. Often politicians want to pass laws that make them look good, but really do nothing for the public. I worked for the MO Dept of Ins. when HIPAA was passed. We were in a meeting about how it guaranteed insurance for everyone, but there was no limit put on it. We got calls all the time from people complaining the insuranc company offered them a plan at $1000 a month. They couldn't afford that and in essence were being denied coverage. But the law was passed and the senators that passed it could pat themselves on the back for it. Hmm, that seems a little off subject. Anyway, I agree completely.

Lori said...

Excellent point! The term is legitimate in the medical sense, so that never bothered me. You are so right, the time to spend money to make those sort of changes is NOT when those who actually need the services are not getting any! How utterly ridiculous!

datri said...

This is just crazy. Typical politicians. No common sense.

Mary said...

We signed up and were put on the Waiver waiting list shortly after Leah was born. We are told there is an approximate 18 year wait at this point.

Sonia said...

I've never had the problem with the words mental retardation when used medically. It's when people use it in a derogatory way that bothers me.

Seriously, all the money spent on dropping the word is useless when services are not being met.