Frontline Initiative Healthcare
Home healthcare support:
Insights from a self-advocate
I require a tracheostomy tube, or a trach. A trach is a surgically made hole that goes through the front of my neck and into my trachea (windpipe) to help me breathe. I use homecare nurses to help me clean and care for the trach. I am a client of homecare services and an employee in an Independent Living Center. I’m going share a person-first perspective of what it is like to receive healthcare support in my home.
I do not consider the Direct Support Professional (DSP) as a healthcare liaison. I consider DSPs to be providers of direct support. As someone living independently, I believe the person receiving support is the expert of his or her own medical needs. Therefore, the person receiving support is the liaison that coordinates services and manages DSPs. Communication between the DSP and healthcare providers is important because it keeps all team players on the same page. However, it is critical that the person receiving support be aware of and involved with the communication.
It is important for DSPs to be aware of their boundaries when supporting someone during a healthcare visit. The person receiving support is, and should be, the primary communicator. The DSP is there to provide information as needed to help the person communicate effectively. For example, I am unable to gather visual details such as color and texture of respiratory secretions. This is important information to a pulmonologist. A care provider helps me to get this information so that I may share it with my doctor.
DSPs may support people who have challenges with communicating their needs and desires or have difficulties with speech. It is important to take time to become familiar with a person’s speech patterns and nonverbal communication such as facial expressions and body language. Some people may also use alternative communication devices like a speech-generating device or a communication board. It is important to care for this equipment and respect the person’s need to use the equipment because it helps him or her perform basic functions. When supporting a person who has significant challenges with communication, it is extremely important for a DSP to consult with the person’s legal guardian or representative before making any healthcare decisions.
So what should a DSP do if the person they are supporting is making a seemingly unhealthy choice? It is important for DSPs to be able and willing to go with the flow. A person receiving support may have the day planned before the DSP arrives. It is not uncommon for a person receiving support to make a choice contrary to the opinion of the DSP, such as having a soda rather than a glass of water. DSPs can give information and advice as they feel is needed to assist in decision-making. That’s about as far as it goes. I encourage DSPs to not take it personally if the person being supported chooses to ignore advice. We heard it and we made our own decision based on our plan for the day. It is ok if we make a choice that a DSP considers bad. We bear the consequences of our own decisions.
People receiving supports have a right to express their desires and make their own decisions just like anyone else. However, DSPs have their rights to comfort also. If you are uncomfortable performing a specific task requested by the person you are supporting, it is ok to say so. Sometimes the difference can be resolved by compromising. If not, the person being supported has the right to make adjustments as to who provides services to him or her.
In your work as a DSP, I encourage you to recognize that the people you support are the experts of their own lives. We are people just like you and want to control our own lives. If you go with the flow and provide information and support when needed, you have done your job well.