The services we offer today for people with disabilities were inspired by families; small groups of parents formed to share their hope for their children. Those families moved the public expectations and response. The most important words I want you to hold in your mind are “hope” and “expectation.” All that early work was done in the mid to late 1960’s.
Fast-forward to today, we now depend on Medicaid. With Medicaid, a host of regulations and a new important word emerged: compliance. Detailed requirements which have become even more prescribed have evolved over the last 15 years. Unfortunately, that focus on preventing mistakes and following “rules” has gone too far. We are now focusing on data and activities which are not in the spirit of a meaningful life, learning, or happiness.
Look closely at this story:
Somewhere in your hometown, Jack is recovering from an ear infection. He just fell asleep, before his mom was able to give him his bedtime dose of medication. Mom decides she is not going to wake him up. She will give him his dose in the morning, better that he gets the sleep.
Now think this way:
Jack lives in a group home. He fell asleep, staff decided not to wake him up to give him his bedtime dose of medicine for his ear infection. So, the following will happen:
- There will be an incident report.
- An investigation will be done.
- The staff member will receive some type of disciplinary action.
- The staff’s name will be reported to the state.
- The doctor will be called and notified of the missed dose.
We need to ask ourselves WHY? Neither the mom nor the staff abuse or neglected anyone. No bad outcome is expected. We trust the mom, but somehow we don’t trust the staff or the agency to use any judgement. This missed dose of medication is one of many things which consume time and take us away from what matters. We need to discuss these rules which are not representative of how we live our everyday lives, and which have become the focus of our limited time and resources in the name of “compliance.”