Close, but Not Too Close: 

Working with Personal Service Providers

I admit it – I have trouble managing the relationship between personal service providers and my family.  By “personal service providers,” I mean habilitation workers, respite workers, attendant care providers, anyone who provides care for your adult child with special needs on a regular (or irregular) basis. 

People in positions like these are generally marvelous people, giving a lot of care for not very much money.  (Either that or they suck.)  I’ve really liked most of the care providers we’ve had over the years.  Some of them become like part of the family – and therein lies my problem.

How close is too close?

Too close is when your young respite provider takes nude photos of herself in your bathroom and manipulates them on your home computer – and forgets to delete them when she quits abruptly to take a job as an exotic dancer while I was out of state and not expected back for two more weeks.

Too close is when your respite and habilitation provider brings her own teenager along but brings nothing to occupy the child’s time while the provider works with my child.  And expects me to feed both of them dinner.  During respite time, when I’m supposed to be resting in order to deal with my own health issues.  The day she bought me new dishes for the kitchen was the last straw.  I liked her a lot, and she was good with my sons, but in this case, too close was too much. 

She was also perpetually late and routinely underestimated how far away places were (and therefore, how long it took to drive there), a sure trigger for one of Ryan’s epic meltdowns.  During her interview, she said she lived “right around the corner.”  Yeah, right around the corner – and another 25 miles down the road, as I discovered a few months later!

Too close is when your older respite provider develops pneumonia but won’t stop trying to provide care despite the fact that he should have been at home, in bed, with his OWN care provider.

Granted, part of the problem is mine for not establishing and enforcing firm boundary lines.  These three individuals were all very good with my sons, which made me want to bend over backward to keep them.  When you find “good help,” you want to keep them around as long as possible.  I never thought hiring and firing staff members would be in my job description as “mom,” but things change when you’re parenting kids with special needs. 

Currently, Wayne is providing Ryan’s habilitation services which include working on improving his personal hygiene, learning to clean up the kitchen and bathroom after himself, and learning to do his own laundry.  Our daughter Michelle provides respite care when she can, but that hasn’t happened much lately due to her being overscheduled for the past several months at her day job.

I’m actually a bit afraid to try getting outside help again.  It’s a lot of work to manage workers for your child, and most days, I just don’t have the energy to be mom and supervisor.  It’s just easier to do it ourselves right now.

 

Based on your experiences, what advice would you give other parents, guardians, and caregivers of adult children with special needs (and me!) regarding habilitation, respite, and other service providers?