Caregivers Who Don’t Care


EDIT: February 19, 2015

We’re down to two R.N.s again, and one is on vacation.  My sister has been working too hard and wound up with an injury.  We run on a pretty slim staff as it is.  When Chris and I have to spell each other taking care of Michael, it’s hard on everybody.  More stress in the house isn’t good for any of us, especially both Michael and John.

With that in mind, I’m re-running this blog post.

by Lillian Csernica on June 29, 2013

stock-photo-77302265-caregiver-reading-a-book-with-a-mentally-disabled-child

I’m seeing a really alarming trend in the news lately.  There are more and more reports of teacher and aides abusing special needs children.   The very people we’re supposed to trust with the safety, care, and education of our learning disabled, medically fragile, and behaviorally challenged children are bullying them and physically abusing them.  This has raised awareness to the point where parents are calling for surveillance equipment in the classrooms to make sure more special needs students don’t suffer at the hands of people despicable enough to abuse their powers of authority.

My younger son John is autistic and has in-home aides who help him after school.  Such aides come to us from the care agency which is contracted with the state agency who pays for this service.  I’m here to tell you that some of the people sent to us by this agency shouldn’t be put in charge of blowing their own noses, much less taking care of a special needs child.  One particular aide John had was a sneaky wretch.  She was all smiles and shipshape manner in front of me, but I found out from one of the other mothers at the park where John played that this aide grabbed his arm and shook him, or she’d drag him around by the arm, and this was before John did anything that might merit strong action.

The day I fired this woman, she stood there in my living room ranting for ten minutes about how the situation was all my fault.  Not until I told her I was about to call the police would she shut up and get out.  I informed all of the mandated reporters I knew about this aide and made it clear to the agency how she had abused my son.

Caveat emptor, my fellow special needs parents.  Just because the state and county agencies say they’ll provide a one to one aide either in school, at home, or both, don’t take whoever they provide at face value.  You would not believe some of the horror stories I’ve heard from other parents about the kinds of people who go into home care, both as nurses and as aides.  Regarding aides, it’s often more or less unskilled labor provided by somebody old enough to make sure the child stays out of trouble and can call 911 if a medical crisis occurs.   That’s not good enough!

Many parents don’t know the right questions to ask, especially when they’re still coping with the shock that follows realizing their child may have special needs.  Many parents aren’t familiar with all of their rights in regard to what they can ask for, and how they can go about making sure the school district provides it.  When Michael reached an age where he could enter the school system, I really wish I’d had somebody there to tell me all the details and guide me through the decisions I had to make.  With these concerns in mind, I’d like to offer this list of helpful and informative links:

Coping with Learning Disabilities

The Assertive Patient

The rights Special Needs Parents have under the IDEA

Expected Standards for a Professional Health Care Worker

The qualifications Care Agencies require from potential in-home workers

As parents, we are the primary caregivers.  We must speak for those who cannot speak for themselves.  We must defend those who cannot defend themselves.

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Filed under autism, Depression, doctors, Family, frustration, housework, Lillian Csernica, marriage, mother, neurodiversity, parenting, perspective, Special needs, worry, Writing

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