As a Quality Coordination Manager for Change, Inc., a division of Penn-Mar Human Services, I oversee six quality coordinators who are managing some 170 cases for people with disabilities using our Westminster, MD services. The role of our department is to help the people we support discover what goals will help them live their “good life,” a life we all are striving for.
But that vision of a “good life” requires choices to make it a reality. And when does choice override risk?
The concept we adhere to of “dignity of risk” acknowledges that life experiences come with risk. Our job is to respect the unique wants and desires of a person and not restrict their rights in the name of health and safety. To support them in experiencing success, as well as failure, throughout their lives.
But balancing those obligations can be extremely difficult.
In the past, and even now to a degree, cultural norms and values can get in the way of that best practice and we think we need to impose restrictions on people with disabilities.
We struggle with that on a regular basis, supporting decisions that we feel are risky, or with which we don’t agree, given a safety-oriented healthcare culture that is shifting to an ever-evolving person-centered culture.
Families want the best for their loved ones. Safety is understandably the Number One priority for many of them. We are tasked with the job of balancing what a person is telling us they want and what a family indicates is best for them. Sometimes the two are very different.
You may be familiar with the term “natural supports,” as it relates to a person with a disability who is able to be independent out in the community without the support of a Direct Support Professional. It’s a relatively new concept that not everyone is comfortable with but increasingly it is becoming more mainstream.
We worked with a woman who wanted to spend more time in the community on her own. She didn’t have any specific activity in mind but her team was lukewarm on the idea. They had always been there to support her.
One day she was sitting in a coffee shop – along a Direct Support Professional – and she stood up, walked up to the owner and said, “I’d like to work here.” Her support team was in shock! The owner didn’t have an immediate opening but invited her to spend a few hours a week learning the ropes.
As a “regular” at the coffee shop, she already had a tight network of natural supports in place — customers and shop employees. Today she is spending eight hours a week at the shop on her own, an opportunity she created for herself as a customer.
We supported another gentleman who underwent hip replacement surgery after a fall. He was admitted to a Long Term Care facility and was told that he would never walk again. While he couldn’t verbalize his feelings, we knew he was devastated.
He had a choice to make: walk or not. He chose walking, no matter the risk or obstacles. Within six months with perseverance, and a lot of help from his support teams, he was up and around with the aid of a walker and staff support.
When it comes to “choice” you can’t go from no-risk to full-risk. There has to be a plan to get to the end goal with small steps that can be taken along the way to balance the risk.
The people we support are adults and they are responsible for making their own choices. We are committed to the dignity of risk, working alongside them to guide and ensure that the risks they choose become rewards.