The Real Help: Respite 2012

What is Respite?

The Help Isn't Like it Use to Be!!

The Help and Respite Care

Growing up I was raised by our Nanny who also happened to be Black. Her name was Gerdy and we loved her with all of our hearts. But times have changed. The help no longer is helpful atleast in my home. I have a child with Autism who I am suppose to receive respite. I should mention I have been waiting for respite for over a decade. Respite is suppose to be provide a minimum of three hours a week so that I can do simple things like attend a dentist appointment or access medical care. I have been denied all of this for over a decade.

When my mother was a live I could occassionally attend an appointment but not with any frequency and especially not the last several years of her life when I cared for her all alone with my son.

So I finally recieved the funding for respite a few weeks ago. I interveiwed the respite care provider and she assured me she had all the qualifications needed. I also verified she had been screened by DCFS. She was Haitian which was no problem for me and I looked forward to getting to know her. Upon our first interview she brought someone who she claimed was her son. I knew there was something a miss as he was too old to be her son and she was too young to be his mother. But I was only hiring her to come into my home to provide one to one care with my son and it was for 60 hours. She would be alone with my child so I didn't really focus on the lie as I desperately needed the respite service.


The second time she showed up I provided her with the schedule that I expected her to adhere to when she was watching my child. I quized her on medical questions she should have known the answers to which she did not. And finally I tried to set up appointments with her. She very clearly lied to me about her hours. I reverified with the state agency and clarified with her as I didn't want to be billed for excessive hours.

I was more then reluctant about leaving my son with her. So the third time she showed up which was an appointment for her to establish a rapport with my child she showed up with two males claiming they were her children. in fact they were not her children as they looked nothing like her. But I played along long enough to gather enough information to report her to the state agency. She had brought her group home clients into my home and was charging the state for 1:1 which is about $9 an hour per client. In effect she was committing fraud and making $27 an hour. My oh my what a scam? She asked if I would run my errands and leave my son and my home to her and her other clients which she maintained were her children. I of course refused. It is sad for me to see creatures far less intelligent then myself lie to me. It is insulting. But I did collect enough information to have her employment as a respite care provider terminated. The poor taxpayer was paying $27 an hour for really neglectful services by the respite provider. I doubt the state will pay her and I am certain they will watch her from now on but why would any parent entrust respite care providers who pull scams like this when they are in fact suppose to be helping the families?

Does it not occur to the state and the providers that the families have a difficult time trusting anyone engaged in fraud, waste and abuse when it comes to providing services to the disabled? As a parent of a disabled child who is in desperate need of respite services, I would never expose my son to such a horrific social situation. If I wanted him endangered I would just shove him in the group home. To the contrary I spend every single day of my life caring for my autistic son and protecting him from a system of fraud, neglect and abuse. And what is my reward for being so loyal to my son? No respite care.

Interviewing Respite Care Providers

Upon interviewing a respite care provider there are guidelines to follow. I followed these guidelines and still ended up with a person who was abusing the system.

1) Ask for a resume'.

2) Ask for references of families who they have worked for,

3) Make certain the respite care provider is clear that no one is allowed in your home besides the care provider and your child.

4) If the respite care provider answers the telephone during and the interview don't hire. And set clear boundaries that you will not tolerate the respite care provider talking on the telephone while he/she is suppose to be caring for your child.

5) Watch your child's cues. If your child doesn't like your respite care provider there is a reason. My son feared his respite care provider and she didn't bother to establish a rapport. I require everyone to establish a rapport with my son.

6) Never trust your provider and verify everything they say they are doing. Sadly this experience has soured me on the respite care provider. I was especially distressed she brought a 30 year old mentally disabled adult into my home who could have easily over powered me and my son. The other young adult was also stronger then both my son and I. And yet this woman sat in my living room lying to me about her relations with her clients and the the nature of what she was doing. She thought I would never confront her and I haven't. I just turned her into the state. It is not my job to police the respite providers. I would submit though that more stringent screening must be conducted on respite providers for the developmentally disabled to protect the disabled but also the taxpayer and the entire system.

Inherently the problem with the system is not the unfunded mandates. The problem with the system is the waste, fraud and abuses that take place in the system thus preventing services for the disabled in any meaningful manor. All I know is I would have never left my son alone with this person even though she had references and an excellent resume'. Her reference came from Washington DC that should have sent red flags up immediately but I really wanted to give her a chance. And my son deserves one to one ratio of respite care since he has been denied his entire life a respite and nursing in the home.

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Comments 2 comments

tlpoague profile image

tlpoague 4 years ago from USA

This is very helpful information that everyone should know. Thanks for sharing it. I had never heard of respite care before now. I know of a family that had three autistic children. She was fortunate in one way to be a stay-at-home mom, but it did hinder her ablity to do certain things when she wanted. I don't think she ever did have respite care. Great hub!


JT Walters profile image

JT Walters 4 years ago from Florida Author

Hi tlpoague,

Respite is suppose to be available to anyone who is a full time care giver. It is suppose to be given to those who care for family members with Cancer and other serious diseases. Sadly, it is rarely given and often the families are so desperate by the time they receive it they accept whatever the respite care provider does as they are screened by state agencies. But this is a loop hole well exploited by respite care provider which the families should be aware. Spread the word if you are so inclined so care givers know their rights. A nurse would not expect to work 24/7 and do it with any efficiency so why would anyone demand that of a non-professional famiy member. It is rather inhumane.

Thanks for reading and leaving a comment. Hopefully others will advocate for respite for the caregivers in their lives.

Have a wonderful weekend.

JT

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