Rufus


Like the story of most other people experiencing disability, Rufus’ focuses on a theme of control…

And this control is almost always external, meaning that others make the decisions for him in virtually every area of his life.

How is it that a man with so many competencies could have lost so much power in his life?

As people allied with Rufus, the question became, “how do we support him in taking more control over his life?” The answer lies in being conscious of a nearly lifetime exposure to human services and the impact that has had on Rufus. Once conscious of this, it is imperative that those services change their structure in order to support personal control.

For Rufus, loss of control happened over the course of four decades…
He was introduced into a sheltered workshop in the early 1970s as an alternative to completing high school. Employment would, from that point on, only make sense in congregative activities (he would work 20 years in a work enclave as a custodian at a post office). His support needs became greater following a stroke and, several years after, an incident that left him hospitalized with recovery in a nursing home.

The court was petitioned for guardianship and this was granted to the state.  It was at this point that years of minimal exposure to human services tipped into full exposure and loss of control.

Instead of living in an apartment or home of his own…
with staff assistance he began living in homes owned by the very agencies that provided staff support to him. He does not have the opportunity to give input on who else lived with him, what time he wakes in the morning or goes to bed. The opportunity to further himself through education and work was replaced with simply ensuring that his personal care needs are met.

As a licensed Adult Day Health Center, we do that well at The Mattingly Center. Historically, Rufus was given his medicine by trained nurses in a timely manner and any coordination around transportation was handled by others. His goals for the center included going on periodic outings, spending time with other people with disabilities in the center, ordering McDonalds, handling his own spending money, and informing others when he is in pain.

What this means is that higher order responsibilities…
have been handled by others while lower order responsibilities (such as what to order from McDonald’s or carrying a $10 bill on his body) have been handled by Rufus. Working within this structured way of thinking is no way for a person to gain any real control in his life.
Therefore, Rufus and members of all the organizations that provide services, including his guardian, and friends outside of service met.

There were so many ways Rufus could take control of his life…
It was decided that Rufus can tell time so he should go and get medicine when it is time. Better yet, he should administer his own medicines and ways for that to happen should be explored. Rufus should handle phone calls for setting up and canceling rides. He would not be told where he was going to live in the future, but would be shown many options to allow him to make an informed decision. Finances would be explained and budgeting would be practiced to begin prepare him to make a case for having his rights reinstated and ending guardianship. From this, the services in which he spends every waking (and sleeping) hour in have been rethinking how they provide service to Rufus.

The physical impacts are significant in themselves…
He has better posture in his chair and has begun to move and use his right hand. Emotionally, he is more confident and likely to disagree with something that isn’t appealing to him.

Soon he will have a schedule where he will attend a local gym without any staff support…
And, that first three hour block he spends without support will be the first three hours he will have spent not being a client of a human service in over eight years.