Frontline Initiative Healthcare

Preventing health problems:
Observing and reporting early signs and symptoms


Beth Marks, RN, PhD is a Research Associate Professor in the Department of Disability and Human Development at the University of Illinois – Chicago.

Jasmina Sisirak, MPH, PhD is an Associate Project Director in the Rehabilitation Research and Training Center on Aging with Developmental Disabilities in the Department of Disability and Human Development at the University of Illinois – Chicago.

People with intellectual and developmental disabilities (I/DD) have earlier age-related health conditions compared to the general population. They also tend to have poorer overall health. This may be a result of inappropriate healthcare services. In general, observing and reporting early signs and symptoms of health changes among people with I/DD is often not done. They often receive less preventive care and more emergency care. This may result in more severe health problems.

In many community-based organizations, a nurse conducts annual healthcare visits with each person receiving services. But many people with I/DD have not been taught how to observe or communicate early signs and symptoms of health conditions. Thus, Direct Support Professionals (DSPs) share in the responsibility for regular monitoring of healthcare. Not only do DSPs assist nurses, they are critical in following up to make sure that people receive ongoing healthcare. 

Research suggests that many people with I/DD have health issues that are not diagnosed or managed correctly. Some of these conditions include pain, dental hygiene problems, epilepsy, and difficulty seeing or hearing. People also have problems with constipation, malnutrition, and obesity. Depression, osteoporosis, and thyroid problems are common as well. As people with I/DD experience these conditions along with disability related issues, emerging health conditions can be further compromised. This is often due to under-diagnoses and misdiagnoses. Or there may be lack of prompt treatment. DSPs are in key positions to observe and report early signs and symptoms of health conditions. DSPs may provide daily hands-on support, such as assisting with personal hygiene, feeding, and dressing. DSPs also provide more in-depth healthcare. This includes passing medications, caring for wounds, and offering emotional support. The responsibilities of DSPs have a vast and diverse range. These depend on individual circumstances. 

Because DSPs provide direct support, they are often the most familiar with the general health status of people supported. They know how individuals tend to work and act. DSPs also have an understanding of their communication styles. As such, DSPs have a vital role in observing subtle changes in health status among people they support. 

However, due to limited training opportunities, DSPs may not know how to observe and report signs and symptoms. They may not recognize serious health conditions experienced by people receiving support. Because DSPs work on the frontlines, having training to know the early signs and symptoms of emerging health conditions is critical. Effective training may also promote communication with health professionals. With this, healthcare among people with disabilities can be better managed. Additionally, the onset of serious health conditions can be prevented.

One training program was developed to support DSPs to learn about signs and symptoms of health problems. This training curriculum and workshop is called Continuity of Care: Early Recognition of Signs and Symptoms of Emerging Health Issues. The curriculum includes a Head-to-Toe Observation Checklist. DSPs can use this to record and monitor emerging health issues of people they support. The Checklist is provided on the center pullout of this issue of FI. It can also be used to facilitate communication among individuals supported and healthcare providers. Following this training, DSPs reported improved knowledge of signs and symptoms. DSPs also gained skill in health advocacy and were more confident in reporting observations. 

An active partnership between individuals, DSPs and healthcare providers can be achieved. This is promoted by effective training. DSPs can routinely look for signs and symptom of potential health problems as they provide daily support. They can communicate their concerns to healthcare providers. Or they can assist individuals to communicate concerns. DSPs become empowered by effective training. As a result, people with disabilities will be able to participate in their communities when they are not constrained by poor health. This is an important mission that we can all share and strive for. 

As our Code of Ethics states, we are “responsible for supporting the emotional, physical, and personal well-being of the individuals receiving support” ( We can advocate for our purpose by speaking with policy makers and organization leaders. The information in this article may provide helpful talking points. We can influence the system to fulfill effective healthcare training for all DSPs.