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Note: I was raised in a Republican household, but I consider myself to be a moderate “Independent”

I have a great job!  I work with clients who have some form of mental retardation. Yes, I used the dreaded R-word.  To be PC I work with clients who have Intellectual & Developmental Disabilities (IDD). I have to use the IDD terminology for my job as some think that because some use “retard” as a slur no one can use it any other form of the word even when it is being used accurately.  So I find myself constantly saying “I work with clients who have Intellectual & Developmental Disabilities” and when I get a blank or questioning stare I add “Formally called Mental Retardation”…makes me want to say: you know like “The Artist formerly known as Prince”. but of course I never would…I just want to sometimes 🙂

Like I said, I have a great job, and for the most part I love it!  I work as a Community Support Specialist with the Home & Community-based Services(HCS) Medicaid Waiver program in the great state of Texas.  I work with clients who live in their own/family home and help them with the life skills and community outings they need to be able to stay there.  I work with one person, and I mainly just transport them back and forth from work, take them to do their grocery shopping and out to eat once or twice a week.  They live alone in their own home, and just need a bit of support to maintain their independence. While I don’t have a client who needs these services right now, I could also help with Daily Living Skills like bathing, dressing, eating, cook, housekeeping etc.

In a lot of ways I’m a cross between a taxi driver, a maid, a social director, a health care worker, and a social worker.  I have to try and find a balance and it’s not always easy when I find my job coming up against my very deep family roots, which just happen to be Southern too.

I was raised that family took care of family.  If a child with special needs was born into the family, the family took care of it, and no help was needed.  My Great Aunt Oma got Scarlet Fever as a two year old and essentially fried her brain into that of a perpetual two year old.  Her older sister Lola was deemed her care giver and spend her entire life caring for Oma.  That was just how it was.  There was never any thought of putting Oma away in a home.  Oma lived to be 86, outliving Lola by almost 5 years.  But family takes care of family.  Right now I have several cousins with various special needs, most of a minor variety.  We have been blessed with very healthy children for the most part.

So the idea that the State should have to pay to help someone take care of their family member with Special Needs just seemed kind of wrong…and there is SOOOO much fraud and dishonesty within the system I find it easy to get jaded.  I mean come on…your “kid” can walk, talk, dress and feed themselves….why is the state paying my company $24 an hour to provide ‘care’ and take them out bowling?(that’s not how much I make by the way!) It makes my Republican roots want to cry.

Now, my moderate Independent self, understands that all families are different, and have different levels of abilities to deal with Special Needs.  I understand that sometimes families just need more support then they can provide on their own…and the family structure is not what it use to be from 30 years ago.  We are much more ‘give me’ then  the ‘let me give’ of days gone by.

There is also a service called “Supported Employment” which is a part of the HCS program.  The State of Texas will pay $19 an hour for someone to go to work with a client of the HCS program to help them find and maintain a job…99% of the time a menial minimum wage job.  Who came up with this and figured out the math???  I totally understand the need for high functioning individuals with IDD to work and stay busy….but for the State to pay $19 an hour to make sure the trash is taken out at Taco Bell?!?  I’m still struggling with this one….

There are changes being made to the program.  it seems like so much focus is given to “rights” that “reality” is being left behind.  Don’t get me wrong.  I believe that there are basic human rights that everyone has, and that we should never take away from anyone: Food, Shelter, Clothing, Religion(or the lack there of) etc.

Here’s my beef, and where my Republican Roots come to the surface.  There are rules in life. Rules put in place by God, Government, and Family.  There are rules that I live my life by, some I agree with and other that I don’t.  But they are the rules and I follow them or I have to suffer the consequences.  If I disagree with the speed limit and drive faster than allowed, I can get a ticket, I drive too far above what the law allows and I can be arrested and have my car impounded. That is the rule.  To serve on a jury I have to be able to read and write. That’s the rule.

Right now they are working on changes to the HCS program that would remove a bunch of the rules currently in place because they aren’t “fair” and they are “restrictive” to the clients in the program.  For example, we can no longer insist that the clients go to see the dentist.  it is their ‘right’ to have all of their teeth rot and fall out of their head.  We can no longer insist that they take vital and possibly life saving medicine.  It is their ‘right’ to refuse.

Pretty much it is their ‘right’ to do anything that they want to do, legal, illegal…we are just suppose to go with it.  I’m sorry…I know of a client who has no concept of money to start with.  They would send every penny of their money on X-rated Rap CDs, Hookers & Alcohol if they were allowed, currently their money is controled by someone else so this doesn’t happen.  We are now being told that this is what has to happen…because it’s their ‘right’…

As a care giver I’m frustrated because many of my clients don’t have the ability to tell the difference between right and wrong…they depend on me for that.  They NEED rules and guidelines to feel safe…to BE safe.

As a care giver I’m worried.  Something BAD is going to happen to one of my clients if I’m forced to stop ‘enforcing’ rules.  I know of clients who will quickly get an STD or HIV because they don’t have the ability to understand the risks involved in sexual behaviors.  Who is going to get blamed when a patient with diabetes losses a leg because they refuse to take their medicine or go to the doctor?  Who is going to get sued when a client dies from sepsis because their teeth are so rotten and infected that it gets into their blood?  I AM.  Their care giver is going to get the blame.  I will be the one who is sued because I didn’t take ‘care’ of them.

I know of a client who wants to drive.  They believe it is their ‘right’ to drive.  This client has the physical ability to drive a car.  But they have limited impulse control, if they are driving in the left lane and see something on the right side of the road they want, they would simply pull over and get it.  It wouldn’t matter if there were cars in the right hand lane in their way.  They wouldn’t care…they would end up hurting someone.  Reality is, they will never have a drivers license.   But it would be ‘bad’ and ‘wrong’ to tell them “NO” because it’s their ‘right’.

My Republican Roots say that there MUST BE a reality check put in place for my Democratic Job.

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