Frontline Initiative Professionalism

Despite the recent movement toward empowerment and choice, many people with disabilities defer to their support worker when it is time to go to a doctor appointment. Direct Support Professionals (DSPs) play a vital role in ensuring that consumers have the opportunities and the skills to communicate directly with their doctors and others. In many ways, these staff are the primary facilitators of communication between patient and doctor. This facilitation requires that DSPs know the individual well, focus their attention on the patient, and support the person in communicating even when the doctor may not be used to such active communication. Thus, it would be best for individuals with disabilities to be brought to medical appointments by staff who work directly with them on a regular basis. In addition, it may be inappropriate for staff and medical professionals to discuss the person’s needs without the person’s input. Finally, it should be the individual’s choice whether or not to recruit staff support in communicating.

The following are recommendations for how DSPs can support both the doctor and people with disabilities in establishing direct and effective communication. Many of these suggestions are based upon work done at the Nisonger Center Women’s Health Groups, where training is available for women with disabilities and their female support staff.

Help people prepare for medical appointments

Some people are afraid of doctor visits. One short-term solution DSPs sometimes use to keep such individuals from getting anxious is to avoid telling them that they have an appointment. This, however teaches the consumer that they cannot trust support staff, and that they have no control over what happens to them. It is essential for DSPs to develop trusting relationships with individuals who are afraid of medical procedures and to recognize and understand their fears. People who are afraid of going to the doctor should also be prepared for medical appointments so that they can gradually overcome their fears. DSPs can prepare individuals by teaching them about the procedure through discussions, photographs, video demonstrations, or visits to the doctor before the appointment. In some instances, an individual might be afraid because of past abuse perpetrated by health professionals. Finding another health professional should be a consideration if fear persists.

Tell people what to expect at medical appointments

Sometimes medical procedures are painful or uncomfortable. Saying that something “won’t hurt” when it does teaches a person that support staff are either immune to pain or untrustworthy. Furthermore, it does not allow them to prepare adequately for the pain or discomfort they may experience. It is better to prepare people for a painful procedure than to deny it. If a procedure is going to be painful, the individual can learn how to cope with it by using techniques like muscle relaxation or deep breathing.

Help people communicate with the doctor

Threats like “You better listen to the doctor” may teach people to be compliant, but also puts them in a vulnerable position. People should learn why it is important to listen to doctors, but also why it is important to inform the doctor when something hurts or when they disagree with a recommendation. It is often necessary to teach people to speak up for themselves and express their discomfort, fear, concerns, and questions. DSPs should also find out what information will be requested at the appointment and familiarize individuals with this information. This way, the individual can take the lead and contribute to the discussion with his or her doctor.

Show the doctor how to communicate with the patient

Physicians may not know how to best interact with patients, especially at the first visit. DSPs can help tremendously by modeling respectful behavior such as asking the patient questions directly, rephrasing difficult concepts for the patient, and asking the patient for permission to discuss a particular issue with the doctor.

As the role of the DSP evolves from that of caretaker to facilitator, it is no longer sufficient for the DSP to report the person’s problems or concerns to the doctor or to relate the doctor’s concerns to the person. Rather, it should be the DSPs responsibility to facilitate such communication between these two parties.