Original Authors (2020): Melanie Hecker, MPA; Susan Klick; Beth Grosso, MSW
Revision (2025): Melanie Hecker, BA; Karen Weigle, PhD; Diane M. Jacobstein, PhD; Micah Peace Urquilla, BA
Bringing voices shaped by real-world journeys into care, this chapter explores how patients, their family members, and supporters, through their lived experience, become vital partners in designing and shaping their healthcare.1
Communication
Speak directly to the patient, regardless of whether they have spoken to you.
Why it matters: People with disabilities often report that providers talk to a family member or caregiver, without including them in conversation. They experience this as demeaning and hurtful.
Speak to every adolescent and adult as an adult.
Why it matters: Providers sometimes slip into a patronizing or paternalistic tone when talking with people who have disabilities. This is experienced by many as demeaning and disrupts provider-patient rapport.
Active listening includes “listening” and attending closely to nonverbal communication. Take the time to ensure you understand what a person is communicating, especially if their communication modality is different than your own.
Why it matters: It is easy to underestimate the importance of what patients have to say or to misunderstand them. Patient insights can have important implications for treatment decisions and should not be discounted.
It is of paramount importance that providers work to earn a patient’s trust. With trust comes greater insight and disclosure.
Why it matters: Patients with disabilities have often had poor experiences with medical providers. As a result, many come in with difficult experiences from their past, discomfort, and wariness or reluctance to share.
Familiarize yourself with alternative forms of communication (e.g., sign language, adaptive/ augmentative communication devices, picture boards).
Why it matters: Providers often assume that if the person is not speaking, they do not have anything to say. This is both disrespectful and ineffective.
Ensure that plain language resources, translation, and interpretation services are readily available.
Why it matters: These are important to foster understanding, respect, and patients’ ability to follow the treatment plan. Plain language is federally mandated in all instances involving health and safety information for the public.
Take the time to get to know the patient and their concerns by asking many exploratory questions.
Why it matters: Simply asking, “What brings you here today?” may not be enough to yield vital information.
Remain open to or ask for feedback from your patients.
Why it matters: Humility goes a long way toward understanding patients’ concerns and needs.
Practice patience and kindness when a patient is in crisis—this goes for the patient and their family members or caregivers- they may be in crisis too! It can be hard to remember even the simplest details when you are stressed.
Why it matters: It is common for providers and staff to become upset or irritated with a patient or family member if they seem unable to provide the relevant history needed to provide treatment.
Address any hesitation your patient may have with the medical system. Validate their concerns.
Why it matters: It is important to remember sensitivities resulting from negative past experiences. It is also important to clarify any potential misunderstanding while responding attentively to a patient’s current discomfort.
Engaging with Supporters and Community Partners
Engage the patient’s family member or caregiver that they choose to invite into the appointment. They can be one of the best resources you have!
Why it matters: Providers sometimes hesitate to engage the patient’s family member or caregiver in the discussion. At the same time, take care not to exclude the patient.
Invite people with lived experience to come to a grand rounds or professional development session. Engage your local disability advocacy group and develop relationships with community agencies.
Why it matters: Partnering with community resources and learning from people with lived experience can help you best support people with disabilities within your practice.
History-Taking and Diagnostic Formulation
Seek to understand what a patient’s disability means to them and how it uniquely affects them.
Why it matters: A common error is to assume that everyone with a particular disability has the same needs. There is tremendous heterogeneity within IDD diagnoses. People with a given diagnosis may have dramatically unique needs, ability profiles, social support, and experiences.
Explore medical and behavioral phenotypes associated with a patient’s genetic syndrome.
Why it matters: A common error is to make a diagnosis without fully understanding a patient’s biopsychosocial vulnerabilities. There is a great deal of updated information available on behavioral phenotypes, diagnoses, and genetic syndromes. The DM-ID2 is a great resource for familiarizing yourself with these phenotypes and can inform the diagnostic process considering biological, psychological, and social vulnerabilities.
Seek to understand how a patient’s health and mental health have been treated in the past and how this may affect current presentation. Many people with IDD have had very negative experiences in medical offices, including if they were hospitalized as children or institutionalized in the past.
Why it matters: Patients with IDD may be mislabeled as “difficult” or “challenging” when they are highly anxious, to the detriment of their treatment. Do not overlook past treatment experiences or the discomfort behind the behavior. Understanding these experiences in the wider context of their lives may give helpful hints for promoting trust and comfort before treatment interventions.
Take the patient’s entire life into consideration: Where do they live? Where do they work? School? Family? Cultural background? LGBTQ+ status? Skills/interests?
Why it matters: The context of patients’ lives may give greater insight into contributing factors and vulnerabilities, as well as helpful hints for treatment interventions.
Utilize patient feedback assessments including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) to assess patient experiences related to mental health treatment and needs.
Why it matters: A lot of valuable information is missed when providers rely solely on proxy and informant feedback. Explore what opportunities a patient may have to be meaningfully engaged in each week.
Encourage patients and caregivers to find recreational and social opportunities in the area.
Why it matters: Boredom, inactivity or lack of meaningful engagement can play a vital role in the patient’s presenting problems.
Medication and Other Treatment Approaches2
Prioritize a patient’s medication history and especially consider if any other providers prescribe medication.
Why it matters: Polypharmacy is a serious problem among people with IDD, especially when multiple prescribers are involved and not communicating with each other. Explain why you are recommending medication, treatment, etc. in a way the patient can understand and then check to make sure they have understood.
Why it matters: Many patients do not understand medical jargon or concepts until they are explained in a plain and personally relevant manner.
Listen to your patient when they say medication side effects are impacting their life.
Why it matters: Providers may dismiss reports of side effects as “common” and therefore acceptable. Acceptability is up to the discretion of the patient.
Effective treatment of the presenting symptoms may include medication but may also require collaboration and support to address the larger contributing context in a patient’s life.
Why it matters: Meaningful activities, supportive relationships, and self-determination can often improve outcomes.
Seek to understand how a patient takes medication. Do they have someone to 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.
Why it matters: These measures are likely to improve the chances that the medication will be taken as directed.
Explore how a patient typically responds to pain, needles, or shots.
Why it matters: It is helpful to understand this well in advance to allay fears and make the experience comfortable.
Ask: “What might be hard about my recommendations?”
Why it matters: Patients may not bring up concerns independently.
Conclusion
By centering lived experience, communicating with respect and clarity, engaging patients and supporters thoughtfully, and approaching diagnosis and treatment with humility and context, prescribers can help foster therapeutic relationships built on trust, understanding, and genuine collaboration. In doing so, we move toward a healthcare experience that honors each person’s voice and experiences.
Considerations for Waiting Rooms3
This section was developed by people with IDD and mental health service experiences and offers important guidance about the treatment environment. Waiting room conditions may be upsetting for people with IDD. Doctor’s offices can set the tone for how these and future appointments will go, so planning to reduce discomfort can be highly effective. The waiting room should be as accommodating as possible and avoid common triggers. To ensure your patients’ well-being and maximize successful outcomes, the following recommendations should be considered:
- Make a commitment to provide training to your office staff to ensure that your waiting room and office staff know basic information about how to communicate with people with autism and IDD, especially those who use alternative means of communication. Staff should be instructed to talk directly to the patient, rather than the family member or caregiver as a proxy. For further information on augmentative and alternative communication (AAC) and communication best practices, see the following resources:
- The AAC Institute’s 10 Rules of Commitment
- Communication FIRST: Listen (short film)
- International Society for AAC: Communication Access
- ASAN: Best Practices for Inclusion of AAC users
- A medical office may be an anxiety-inducing environment for many people with IDD, and some people respond by moving around and making noise. These are not behaviors to be concerned about; they may in fact be self-regulating for the person. Instruct your waiting room staff not to get angry at or reprimand patients with IDD in your waiting room, as this may escalate the patient’s anxiety.
- Have calming tools such as squeeze balls and fidget cubes available in your waiting room. Every purchase from the following fidget shops benefits Autistic people:
» shop.autisticinnovator.com
» allthingssensoryshop.com
» weightedwildlife.com - Institute a practice-wide policy of no strong fragrances. Share this new policy in your newsletters, email communications, and new patient paperwork.
- Fluorescent lighting can be difficult for people who have visual sensory issues. Consider using light filters for fluorescents and/or more ambient lighting options such as floor lamps.
- Pale blue or pastel walls can help create a calming atmosphere.
- 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 seating space or “calm room” (not a treatment room) in case your waiting room becomes overstimulating for people with sensory issues. This is especially important for large, busy hospital waiting rooms or those that include people of all ages or noise tolerance.
- Consider instituting a policy about requesting patients to use headphones with cell phones or tablets.
- Delays are an inevitability, and some people may have difficulty waiting. Others may be using pre-arranged transportation to get to the office. Consider delayed announcements, a visual display of estimated wait times, or prioritizing appointment times for patients who do not do well with waiting (dislike crowds, difficulty waiting prolonged periods, or may have other sensory challenges).
- Regarding appointment delays, consider procedures to text a patient who may be outside or in the car when you are ready for the appointment.
- Give people a realistic timeframe for when to expect to be seen after moving them to the exam room. Try to avoid leaving people alone in the exam room for extended periods.
Conclusion
In conclusion, the thoughtful design of the waiting room and broader clinical environment can make a significant difference in the comfort and engagement of patients with IDD. Because this guidance was developed by people with lived experience of IDD and mental health needs, it reflects real needs and practical solutions. Small changes, such as training staff in respectful communication, reducing sensory triggers, providing calming tools, managing lighting and noise, and offering a quiet space, can help reduce anxiety, build trust, and set a positive tone for every visit.
References
- Boyd K, Diepstra H, Elbard K, Hamdani Y, Lunsky Y. Consumer inclusion: Experience of patients with intellectual and developmental disabilities informs primary care. Can Fam Physician. 2018;64(Suppl 2): S8-S11.
- CDC. Become a Disability A.L.L.Y.—Information for Healthcare Providers. Centers for Disease Control and Prevention. October 9, 2024. Accessed November 20, 2024. https://www.cdc.gov/ disability-inclusion/strategies/become-a-disability-ally-hcp.html
- Shady K, Phillips S, Newman S. Barriers and Facilitators to Healthcare Access in Adults with Intellectual and Developmental Disorders and Communication Difficulties: An Integrative Review. Rev J Autism Dev Disord. 2024;11(1):39-51. doi:10.1007/s40489-022-00324-8
