Funded by the WITH Foundation
The Lived Experience Perspective: Working with Patients and Supporters
Melanie Hecker, MPA, Susan Klick, and Beth Grosso, MSW
- Communicating with Patients with IDD and Their Family Members
- Considerations for Waiting Rooms
- Sensory Considerations for Medical Providers
- Cultural Competency and Prescribing
- Abilities Based on Level of IDD
- Developmental considerations that impact psychiatric assessment
Best Practices in MH Diagnosis and Treatment
- Trauma and Stressor Related Disorders
- Anxiety Disorders
- Obsessive Compulsive and Related Disorders
- Depressive Disorders
- Bipolar Disorders
- Grief and Loss
- Schizophrenia and Other Psychotic Disorders
Communicating with Patients with IDD and Their Family Members
|Talk directly to the patient.
|Talk around/over them.
|Engage the patient’s family member/caregiver that they invite into the appointment—they can be one of the best resources you have!
|Hesitate to engage the patient’s family member/caregiver in the discussion.
|Miss the value in what patients have to say.
|Explain why you are recommending a medication, treatment, etc. in a way the patient can understand.
|Assume that the patient knows what you know or use medical jargon that the patient may not understand.
|Ask a lot of exploratory questions.
|Simply ask, “What brings you here today?”
|Value the importance of your patient trusting you—with trust comes greater insight and disclosure.
|Have an expectation that every patient automatically trusts you.
|Seek to understand what a patient’s disability means to them and how it uniquely affects them.
|Assume that everyone with a particular disability has the same needs.
|Explore medical/behavioral phenotypes associated with a patient’s genetic syndrome
|Make diagnoses without fully understanding a patient’s biopsychosocial vulnerabilities.
|Seek to understand how a patient’s mental health has been treated in the past and how this may affect current presentation.
|Label a patient as “difficult/challenging.”
|Remain open to feedback from your patients.
|Believe that your patients have nothing to teach you.
|Take the patient’s entire life into consideration: Where do they live? Where do they work? School? Family? Cultural background? LGBTQ+ status? Skills/interests? Etc.
|Focus solely on the reason for their visit today- the context of their lives may give helpful hints for treatment interventions.
|Treat the symptom and address the larger contributing contexts.
|Focus solely on reducing/resolving the primary symptom.
|Ask with an open mind whether the patient uses any homeopathic or traditional remedies and if so, what? When? How?
|Overlook the importance of asking questions which can provide insight not only into potential contraindications but may also present alternate options to medications and/or lifestyle modifications.
|Explore the opportunities a patient has to be meaningfully engaged in activities each week.
|Overlook the role that boredom/inactivity may be having on a patient’s presenting symptoms.
|Seek to understand how a patient takes medication—do they have someone help them? Do they often skip/forget doses? Do they take it in the morning, afternoon, or night? Make a plan to promote adherence and consistency.
|Assume that because you prescribe a medication it will be taken as directed.
|Prioritize a patient’s medication history—do any other providers prescribe medication?
|Assume you are the sole prescriber.
|Recognize if you may not be the best fit for a patient’s treatment needs and offer a referral.
|Continue to provide care when there may be another provider better suited to the patient’s needs.
|Practice patience and kindness at all times, especially when a patient is in crisis—this goes for the patient and their family members/caregivers. They may be in crisis too! It can be hard to remember even the simplest of details when you are stressed.
|Become upset/irritated with a patient and/or family members if they seem unable to provide the relevant history needed to provide treatment.
|Invite people with lived experience to come to a grand rounds/professional development session. Engage with your local disability advocacy group and continuously strive to build competency and promote inclusion.
|Overlook the importance of asking questions which can provide insight not only into potential contraindications but may also present alternate options to medications and/or
|Explore how a patient typically responds to pain/needles/shots.
|Wait until a procedure is scheduled to ask questions around pain/needles and shots.
|Ask: “What are some of the challenges with my recommendations?”
|Assume patients will bring up things independently.
Considerations for Waiting Rooms
Waiting room conditions are often overlooked. Doctors’ offices leave an important first impression on your patients. The waiting room should be as accommodating as possible and avoid common triggers. To ensure your patient’s well-being and maximize successful outcomes, the following recommendations should be considered:
- Ensure that your waiting room staff know basic information about how to communicate with people with Intellectual and Developmental Disabilities (IDD), including those with Autism Spectrum Disorder (ASD).
- Instruct your waiting room staff how to respond to noisy or agitated patients without anger or reprimand, as these may escalate patients’ anxiety.
- Have calming tools such as squeeze balls and fidget cubes available in your waiting room (https:// www.stimtastic.co/stim-toys. Every purchase benefits Autistic people).
- Institute a practice-wide policy of no strong fragrances. Share this new policy in your newsletters, email communications, and new patient paperwork
- Pale blue creates a calming atmosphere and is the best paint color for your waiting room. Green, pink and lavender are also calming colors.
- Fluorescent lighting can be difficult for people who have visual sensory issues. Consider more ambient lighting options such as floor lamps and LED lights for ceiling fixtures.
- If you have a TV in your waiting room, make sure there is an easy way to quickly lower the volume or turn it off.
- If possible, set aside a quiet space or "calm room" in case your waiting room becomes overstimulating for people with sensory issues. This is especially important for large, busy hospital waiting rooms.
- Delays are an inevitability. People may have difficulty waiting. Some may be using pre-arranged transportation to get to the office. Consider delay announcements, a visual display of estimated wait times, or prioritizing appointment times for patients who do not do well with waiting (who dislike crowds, who have difficulty waiting long periods, or who may have other sensory challenges).
- Even with environmental accommodations, it can sometimes be difficult for some patients to spend time in the waiting room. In situations like this, consider the option of having patients remain in their vehicle until their appointment time.