Frontline Initiative Healthcare

Advocating in a healthcare setting:
The critical role of DSPs


Seth Keller, MD is President of the American Academy of Developmental Medicine and Dentistry and serves as a consulting Neurologist to New Jersey State Developmental Disability Centers as well as a member on The Arc of New Jersey, Mainstreaming Medical Care Board. Dr. Keller lives in New Jersey.

Being healthy affects a person’s quality of life. A person with a disability may experience additional health issues that are inherent to his or her disability. Some of these common health issues include seizures, low muscle tone, and swallowing difficulties. Each of these medical problems can cause daily challenges, which may make a person feel sick and not able to be happy and enjoy life. 

The person receiving support may not be able to explain or describe how he or she feels. The person being supported may act differently and sometimes his or her behavior may change for the worse. This may be because he or she is experiencing pain or confusion due to sickness or discomfort.  

DSPs can be a major help to the people they support, especially when it comes to health.

The medications that are given by the healthcare provider are used to help heal an illness. But sometimes the treatments prescribed can cause side effects.

How would a person who has difficulty communicating tell you that his or her stomach hurts? How would he or she tell you that about feeling dizzy or nauseous? The person may not be able to. But, the Direct Support Professional (DSP) and family member will know something is wrong.  

DSPs can be a major help to the people they support, especially when it comes to health. DSPs will know if the person is not feeling well. They will know if the person is taking prescribed medication, brushing his or her teeth, eating the right food, exercising, and going to doctors’ appointments. They will also know where to get the individual’s important health information. 

The healthcare provider may not really know how to speak to the person receiving support. The office staff may not appreciate that sitting a long time in the waiting room may be difficult or scary for a person receiving support. The doctor or nurse may not understand that people with disabilities have real feelings and purpose. Healthcare providers may even direct all of their conversation towards the DSP and not talk to the person directly. The DSP must be the one to explain the correct ways to speak to a person with disabilities. It may be surprising to you, but doctors and nurses do not get special training on how to speak or care for someone with a disability. They may be ignorant, but ignorance doesn’t mean they don’t care or aren’t nice. 

Finally, the healthcare provider may not have a lot of time for an office visit. Therefore, it is very important that the DSP come prepared for each visit. The DSP must know what health issue is the most important to talk about during the visit. The DSP must know how the person he or she supports is feeling and if the health condition is better, worse, or the same. How is the medication working? Is the person experiencing possible side effects?

Keeping healthy is a team effort. The DSP is often key. The person with the disability is the most important member of the team. Everyone else, including the family, doctor, nurse, friends, and DSP, must work together to support the individual in being healthy and having an enhanced quality of life.