Delivering Telehealth Mental Healthcare for People with Intellectual and Developmental Disabilities

Andrea Caoili, MSW, LCSW, EdD; Jessica Kramer, PhD, OTR/L; Jennifer McLaren, MD; Micah Peace Urquilla, BA; Janie Poncelet, MSW, LCSW

Because some patients have had negative experiences with telehealth, they may be reluctant to engage with prescribers virtually. It’s therefore essential to acknowledge and address those concerns up front to help ensure successful telehealth interactions.

Overview

Telehealth is defined as any services provided using telecommunication platforms, such as a computer, tablet, or phone.¹ There are several factors to consider in the telehealth decision-making process including patient and family preferences, communication styles, and access to devices and the internet.^1-4

Framework for Telehealth-Based Service Activation⁵

There are three primary stages to address when providing telehealth services. They are prepare, engage, and assess.

Prepare: Prepare yourself, the patient, and their caregivers to maximize their telehealth service experiences.

Engage: Use strategies that build rapport, provide accommodation, promote trust, and encourage participation.

Assess: Continual assessment of effectiveness to refine telehealth services to meet the needs of each person and family.

These principles build the foundation for effective mental health services provided via telehealth.

Prepare 

To help patients and caregivers prepare for telehealth sessions, and communicate their needs ahead of time, encourage them to watch the video “How to Make Telehealth Work for You” and complete the accompanying worksheet. These tools are available for free access here.⁶

Professional Comfort with Telehealth

It is important to be familiar with navigating the telehealth platform(s) your clinic uses to minimize disruptions during sessions. This includes knowing how to use common features such as unmuting your microphone, turning on your camera, and enabling closed captioning. Confidence in navigating the platform(s) allows you to support patients and caregivers so they can be actively engaged during their visit. 

Providers should be familiar with the user’s interface. For example, providers should understand how users navigate their electronic health system to access the link, or what control options are available during the meeting. 

Scheduling

As with in-person services, meetings should be scheduled at a time that works best for the patient and caregiver. For some with limited internet bandwidth or devices, scheduling must accommodate the needs and responsibilities of other members of the household (e.g., family members’ work schedules, siblings’ school, or homework schedules). 

Supporting Patients’ Use of Telehealth Technology

Practice & Support: Confirm that the patient knows how to join their upcoming session, whether it be via an e-mailed meeting link or by joining a secure portal/website. Patients may need guidance on multi-step processes for joining via secure portals or websites to ensure they understand how to navigate to the appropriate appointment link. Clinic staff should provide all new users with a supported opportunity to practice accessing, as well as step-by-step instructions that include screen shots. 

Patient Comfort and Privacy

Reduce Distractions: Telehealth sessions are most effective in a quiet, private environment. Using headphones can reduce background noise and distractions. You can encourage the patient to set phone, email, and text notifications to “do not disturb” or silent during the appointment.

Create a Comfortable, Safe Space: Ideally, the patient should identify a private or semi-private space for telehealth appointments. A designated space for the patient’s telehealth equipment and materials creates a familiar, consistent setting to promote full engagement. Having materials readily available, like fidget devices or a blanket fosters comfort. If privacy is limited, invite the patient to use headphones or chat (if your telehealth platform allows for this feature). 

Identify a Trusted Supporter: Preparing for telehealth may include identifying someone who can assist with technology if needed. Having a trusted supporter to call on can reduce anxiety and help the patient remain resilient and engaged if technology or other challenges arise.

Engage

This section provides strategies to promote engagement through telehealth by building rapport, encouraging communication, and implementing accommodations. These strategies create a comfortable and supportive environment for the patient. 

Build Rapport 

Active Listening: Demonstrating active listening over telehealth involves the use of open, friendly, and engaged body language. Non-verbal cues that demonstrate you are present and engaged include smiling, nodding, and looking/leaning into the camera as much as possible.

Follow-up: Implement strategies for action items identified during sessions such as contacting other providers, tests, or starting a new prescription. If you use a note taking system that patients can also access through medical portals, clearly label action steps and who should do them by what date for clarity for the patient and their caregivers. 

Positive Engagement: Strength spotting is a positive psychology method to identify patient characteristics and is an effective way to build rapport, promote engagement, decrease tension, and improve self-esteem. The goal is to foster an environment where strengths are activated. For more information on using strengths-based approach, visit the  VIA Center for Character Strengths⁷ and Proof Positive Autism Wellbeing Alliance.⁸

Use of Cameras: Medical telehealth platforms may have different control options when it comes to camera use. Some may allow users to turn cameras on and off, while others may always require cameras on. Be aware that patients may be distracted by or may not like to see themselves on screen and may decide to turn their camera off. Prescribers can gradually encourage the patient to turn the camera on for brief periods of time until they are comfortable keeping it on the entire time. 

Accommodations

As with in-person services, accommodation should always be considered when planning telehealth sessions. For services to be accessible, providers must work with the patient and their caregiver if present, to ensure appropriate accommodation is provided.

Some accommodations, such as language interpretation services, may require additional preparation for effective implementation. Familiarizing yourself with how to enable telehealth platform features is an easy way to make telehealth services more accessible. To provide quality telehealth-based services, you need a clear understanding of the expressive and receptive communication abilities and preferences of the patient and their caregiver(s). Additional accommodations for services over telehealth are outlined in Table 1.

Table 1: Recommended Accommodations for Telehealth Accessibility for Patients with IDD

Assess

 A necessary part of mental health service delivery and medication management is the assessment of well-being. Conducting a mental health assessment via telehealth can be effective. However, there are unique considerations and challenges when using telehealth outlined below. 

Use of Assessment Instruments via Telehealth

The structure of a mental health assessment largely remains the same whether done in-
person or virtually. The key elements of the assessment typically include an exploration of the presenting problem, assessment of mental status, psychosocial and medical history, and cultural considerations. 

Adapting Questionnaires for Telehealth

Prescribers may use checklists or questionnaires to monitor symptoms and medication side effects. These may be administered on paper or tablet during in-person visits. For telehealth, administration procedures may need to be adjusted:

• Paper documents can be emailed or mailed to patients, depending on their preference.
• Secure medical systems may also deliver documents electronically.
• When delivered electronically, ensure that patients and caregivers know how to respond.
• Prescribers can also choose to administer the questionnaire verbally during the session.
• People with IDD may need more time to process and respond to questions. They may also benefit from both reading/seeing each question while it is asked aloud.
• If tools are completed before the session, inquire who provided the responses to the questions. Caregivers or other supporters may have good intentions, but they may inaccurately answer on behalf of the patient.

Navigating the "Screening Out" Effect 

The “screening out” effect is the phenomenon in which the patient or caregiver only shares pieces of the full situation which directly impacts the provider’s ability to conduct a comprehensive assessment. This is often unintentional but can have a significant impact on accurate information gathering and service planning. Effective strategies to complete comprehensive observation and assessment via telehealth include:

• Ask the person targeted questions to gain a better understanding of their environment (ex:
  “What is your favorite room in your home?”)
• Invite the person to provide a “tour” of their environment with their tablet or smart phone
• Speak to caregivers/family members to gather their observations that may be difficult to gather via telehealth
• Attend to interpersonal interactions between family members for patterns or interaction approaches that may contribute to dysregulation

Monitor for Engagement, Dysregulation, and Risk 

A person may become dysregulated for many reasons, some of which may be the direct result of meeting over telehealth. Stress may begin to increase due to overstimulation, frustration with technology, or distractions. Common signs that may indicate increased stress while employing telehealth are:

• Turning off the camera: Be mindful of any sudden changes in camera usage and what that might mean for the person. For example, someone may abruptly turn their camera off if they become upset during a session or someone who typically has their camera on has not had it on recently
• Pacing or walking away from the screen
• Changes in facial expression: Grimacing, lack of eye contact, or looking off into the distance
• Changes in tone of voice, speech volume, or length/pace of response: One or two-word answers, appearing withdrawn from conversation, decreased eye contact, speaking faster/louder
• Stating that they need a break
• Be aware of both common and person-specific signs of stress. Communicate with a trusted supporter onsite to help monitor non-verbal and other signs that may be difficult to observe on telehealth

Conclusion

Telehealth holds promise for improving access to mental health services, but only if thoughtfully designed around the needs of patients with IDD and their families. By preparing all participants, engaging with accommodations and rapport-building, and continually assessing effectiveness and stress, providers can deliver telehealth care that is accessible and responsive. When telehealth 
is implemented with intention, it can become a meaningful channel to stronger therapeutic relationships and better outcomes.

References

1. Ali D, O’Brien S, Hull L, Kenny L, Mandy W. “The key to this is not so much the technology. It’s the individual who is using the technology”: perspectives on telehealth delivery for autistic adults during the COVID-19 pandemic. Autism. 2023;27(2):552–564. doi:10.1177/13623613221108010
2. Bundy R, Mandy W, Kenny L, Ali D. Autistic people and telehealth practice during the COVID-19 pandemic: a scoping review. Rev J Autism Dev Disord. 2023. doi:10.1007/s40489-023-00387-1
3. Friedman C. Telehealth service delivery in Medicaid home and community-based services for people with intellectual and developmental disabilities. Int J Telerehabil. 2022;14(1): e6478. doi:10.5195/ijt.2022.647
4. National Quality Forum. Rural Telehealth and Healthcare System Readiness Measurement Framework. 2021. https://ctc-ri.org/sites/default/files/rural_telehealth_final_report%20 measurement%20framework.pdf. Accessed July 23, 2025.
5. Kramer JM, Beasley JB, Caoili A, Kalb LG, Goode TD, Peace Urquilla M. Optimizing telehealth delivery for people with intellectual and developmental disabilities and mental health service experiences. J Ment Health Res Intellect Disabil. 2025;18(2):239–260. doi:10.1080/19315864.20 25.2459413
6. Institute on Disability, University of New Hampshire. Evaluation of Telehealth Services on Mental Health Outcomes for People with Intellectual Disabilities. University of New Hampshire; published July 25, 2023. https://iod.unh.edu/evaluation-telehealth-services-mental-health-outcom…. Accessed July 23, 2025.
7. VIA Institute on Character. VIA Character Strengths Survey & Character Reports. VIA Institute on Character; 2025. https://www.viacharacter.org/. Accessed July 23, 2025.
8. Proof Positive Autism Wellbeing Alliance. Proof Positive. Published 2022. https://proofpositive.org/. Accessed July 23, 2025.