OFFICE ORGANIZATIONAL TIPS
General Office Preparations
- Encourage office staff, when any new patient makes an appointment, to ask if the patient has a disability or special needs so that the office can be prepared.
- Meet with office staff to discuss office organization and possible accommodations for visits by specific patients with IDD.
- Prior to the appointment, assess the physical access to the office and equipment required for those patients who use a wheelchair or have mobility issues. (See the Americans with Disabilities Act guidelines on accessible medical office and the U.S. Access Board’s Standards for Accessible Medical Diagnostic Equipment.) Accessed July 2021.
- Check accommodations that may need to be made (e.g., for some patients with autism, fluorescent lights can create problems, or for patients with pica, removing objects, such as gloves, from the waiting and examining rooms that could be eaten).
- Strive to schedule any appointments to minimize the waiting time, as waiting can be difficult for some patients with IDD. Avoid phrases such as “It will just be a few minutes,” unless the wait will actually be less than five minutes.
- Allow sufficient time for the physician to assess the patient’s communication skills and to establish rapport (may need to book a double appointment).
- For patients who are quite anxious about visits to the doctor:
- Have patients visit the office at least once to get accustomed to the office and for an introductory ‘meet and greet’ session. Such initial visits should only involve meeting staff and getting used to sounds and smells of the office.
- During this ‘meet and greet’ session, encourage patients/caregivers to sign a release of information for previous health care records and obtain any paperwork that would need to be completed before the first scheduled appointment.
- Consider creating a visual schedule of the routine procedures to be performed during the visit, including photos of you and your office staff.
- Encourage office staff to explain to patients and caregivers that agenda-setting is vital for the initial visit with the physician, and that the initial visit is primarily to get acquainted and address only urgent health matters. A soon-to-follow appointment may be made to discuss other issues and formulate an overall health care plan.
- Explain to caregivers the importance of ensuring that the person who accompanies the patient is a reliable reporter and familiar with the patient’s current health issues, if the patient has difficulties sharing and receiving health information.
Initial Office Appointment
- Encourage office staff to take the patient and caregiver(s) directly to an appropriate room.
- Greet the patient first. Ask whether you may use his/her first name and whether the caregiver(s) can stay.
- Seek to establish a rapport with the patient.
- Take time to check the patient’s communication skills and whether the patient uses an augmentative and alternative communication system or device.
- While the focus of relationship building and communication should be on the patient, it is also important to establish a relationship with, and obtain information from, the patient’s main caregiver (e.g., family member, support provider, group home staffer) if the patient has difficulties with communication.
- Agree on an agenda at the start of the visit with all present.
- Inform the patient that you may later ask whether you can examine him/her alone.
- Recognize the need to reduce stress by respecting the patient’s limits (i.e., it may take several visits to complete a physical exam).
- Be prepared to end an appointment early if it becomes distressing to the patient. The patient sets the agenda.
- It may take a few visits to adequately understand a complicated medical history and to establish mutual trust in order to allow uncomfortable or invasive examinations.
- After obtaining appropriate patient and/or conservator consent, consider corroborating the history with different caregivers involved in the life of the patient (e.g., group home and day program workers), either during office visits and/or through later telephone conference calls, if needed.
- Specific advanced preparation and coaching may be necessary for intrusive examinations (e.g., pelvic examinations in women, prostate exams in men). For further information, see educational resources below.
If Exams and Investigations are Needed
- Ask permission to proceed before any intrusion of the patient’s personal space.
- Explain to the patient about what to expect from procedures that may need to be done immediately. Visual schedules can be very helpful. (See Resources below.)
- Ask caregivers whether individual care plan or protocols have been established for some procedures (e.g., venipuncture) and follow these.
- Provide reassurance during the procedure while understanding that even if the procedure does not hurt (e.g., use of otoscope or placement of electrodes), the patient may have negative reactions due to sensory sensitivities or a previous negative experience in a health care setting.
- For bloodwork, X-rays or physical exams, some patients require various strategies that may include written stories or a visual schedule about this exam, continued reassurance and support, and a desensitization plan.
- For patients who are resistant to a physical exam, consider gradual repeated exposure to the office and instruments such as the exam table and blood pressure cuff. Eventually, when patients feel safe enough, invite them to lie down on the examination table.
- Use of topical anesthetics, such as EMLA cream (apply at least one hour before procedure) or a sedative medication, such as lorazepam, may be helpful prior to distressing procedures, such as blood tests and radiological investigations.
Prescriptions and Referrals
- When referring, identify that this is a patient with IDD. Send as much pertinent information as possible, including any adaptations, accommodations or communication strategies that you have found helpful with this patient (i.e., all the information you would like at a first visit).
- Consider a direct telephone call with the specialists concerned so that they understand the referral question and the complexities that may be faced in evaluating this particular patient.
- It may be helpful to network with other physicians in your area who care for patients with IDD. They may know and have worked with specialists who are especially accommodating and knowledgeable regarding patients with IDD.
- If a referral is made for a specialist consultation, consider deferring blood tests until after the appointment so that all tests can be undertaken at one time.
- Track all referrals made until consultation reports are received.
- Send a copy of any new prescriptions to the patient’s pharmacist, maintain a copy in the chart, and provide the patient or caregiver with a copy.
Original tool: © 2011 Surrey Place Centre.
Developed by Sullivan, W & Developmental Disabilities Primary Care Initiative Co-editors.
Modified with permission of Surrey Place Centre.
- Autism Steering Committee – North Shore LIJ. Your next patient has autism. http://bridges4kids.org/Disabilities/YourNextPatient.pdf Accessed July 2021.
- Vanderbilt Kennedy Center. These booklets focus more on adolescents, but they may be useful with some older individuals. Available at: http://vkc.vumc.org/healthybodies/ Accessed July 2021.
Healthy Bodies-Girls-Appendix (with visual supports)
Healthy Bodies-Boys-Appendix (with visual supports)
- Vanderbilt Kennedy Center/Autism Treatment Network. Taking the work out of blood work: a provider’s guide. Includes samples of visual schedules. Available at: vkc.vumc.org/assets/files/resources/bloodworkprovider.pdf Accessed July 2021.
- MyRoutine app, created by Vanderbilt’s Monroe Carell Children’s Hospital, provides a customizable story format for an iPad for a visit to the doctor or other types of routines for those who are visual learners. See MyRoutine.
- These websites offer pictures or photos for free for people to use to design communication charts or visual schedules for their offices or programs: www.pictoselector.eu Accessed July 2021.
- Bradley E, Lofchy J. Learning disability in the accident and emergency department. Advances in Psychiatric Treatment. 2005;11:45-57.
- Lennox N, Beange H, Davis R, Survasula L, Edwards N, Graves P et al. Developmental Disability Steering Group. Management Guidelines: Developmental Disability. Version 2. Victoria, Australia: Therapeutic Guidelines Limited; 2005: 7-27.