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Managing Services, Balancing Life

Posted by disabled_mom (My Page) on
Mon, Jun 21, 10 at 13:08

I'm a disabled mom to a 19 year old son with Special Needs. He graduated school last year and we've been struggling with Services and Programs that are supposed to provide him with skills and support he requires to be an independent and productive individual.

We are currently utilizing MR Waiver Funding that allows us to have a Job Coach working with him as he volunteers in different positions to learn proper work etiquette and to see what skills he has that he can use in a potential job.

We've also been utilizing Habilitation Aide services for nearly 3 years now. We had an agency hiring and providing the aide for more than 2 years, but the aides they found were always between 19-24 years old, usually college students using the position as a form of additional income and a flexible schedule, something to do until they are able to get the job they 'really want'. Therefore, they come and go quickly and offer little in the way of skills.

After losing our third agency aide, we decided to become our own 'provider', meaning we would have more flexibility, more control in hiring and scheduling. We would be able to offer a better hourly wage through the waiver funding and we knew a couple of people who had worked in social services who were interested in the position.

The first person was terminated before her first month was over because she broke all the rules and called off three of the 8 days she was scheduled. The second person isn't working out, as she's making poor decisions while out with our son, she embarrasses him and does things that are unsafe. We are having trouble getting her to follow procedure and cooperate with us. My son is to the point where he doesn't want to go out with her anymore.

I'm having trouble managing his programs. I have to hire, train, schedule and manage his hab aide and juggle the schedule he's working with his Job Coach around his hab aide and our family schedule, my husband's work hours, etc. and my own disability is complicating things more than I imagined.

Is anyone else in this situation? How are you dealing with your own disability while managing the care of a family member? I'm not balancing things very well at all, I could use some ideas or strategies that might lessen the stress.

Thank you, in advance!

Follow-Up Postings:

RE: Managing Services, Balancing Life

Depending on what your son has, such as MS or ???? those organizations also have help (free/low cost) avaiable. You should not have to do everything. Here in ND there are special homes avaiable who train and take care of some of the needs. My friend's son is in one and doing great.
Are you looking for a male aid? Check your local hospitals also.
Good luck

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