What is the reason for today’s visit?
Adults with intellectual or other developmental disabilities may have difficulties explaining their symptoms or expressing pain, so the health care provider may have trouble determining the presence of an illness or injury. Having a direct support professional who knows the patient, knows how the patient communicates, and knows some medical information about the patient can be vital to helping the primary care provider effectively treat the patient. If the patient is unable to do so, briefly explain why he or she is seeing the health care provider today:
- Yearly check-up
- Illness or issues
- Injury
- Chronic medical condition
- Behavior/mental health concerns
When illness is suspected
- What symptoms does the patient have?
- How long has the patient had these symptoms?
- How has the patient been eating and sleeping? Any changes? Any changes in toileting habits? Any significant changes in the patient’s life, such as a new roommate or loss of a parent or friend?
- If the patient has limited communication skills and is behaving differently than usual, what behaviors have created cause for concern?
- How long have these differences in behavior been evident?
When chronic conditions are present
- Alert the health care provider to the ongoing medical issues, (e.g. diabetes, seizure disorder, high blood pressure, high cholesterol).
- Bring any data that is maintained to monitor these conditions, preferably the past month’s information.
- If this is a first visit to a new doctor, make sure the health care professionals are aware of the patient’s developmental disability and the primary medical diagnosis, if known.
What medications does the patient take?
- Bring a list with the name and dosage of all medications, over-the-counter drugs, vitamins, minerals and/or herbal supplements
- Reason for the medication
- Medication allergies
- Are refills needed?
- Any recent medication changes? (Starting or stopping a medication, changes in dosages)
- Any side effects?
Coordination of care
- If the patient sees other health care providers, have a list of these providers, their names, and the conditions for which they treat the patient.
- Make sure the patient has his/her insurance card.
- If possible, help the patient share his/her medical history and family medical history.
Communication is important
- Make sure you understand the doctor’s instructions.
- Ask questions: What is this medication for? How soon should the patient see benefit from the medication/treatment? Are there possible side effects to watch for?
- Ensure good communication following the appointment between you and the supervisor for the home or agency, if the person is in supported living.
- Have a process to make sure that any health care instructions are shared with all support staff who work with the person.
- Bringing back the paperwork from the physician’s office is just the beginning of maintaining the person’s health.
‣ VKC Resources
‣ Local and National Resources
- The Florida Center for Inclusive Communities offers a series of factsheets and materials that are aimed at helping patients with IDD understand their health care needs.
- The Got Transition website is dedicated to improving the supports for health care transition for young people with disabilities as they move into adult health care.
- The Health Care Tool Kit is a 24-page booklet that lets the individual introduce himself and his health care needs to a new health care provider. The booklet offers color-coded sheets for the patient, the family, the health care provider.
* The IDD Toolkit and related resources were funded by a grant from the WITH Foundation, Palo Alto, CA.
Top photo by Getty Images/iStockphoto
[December 2018]