Many People with Intellectual and Developmental Disabilities (IDD) also have mental health needs requiring the support of mental health service providers, yet they may experience barriers to full engagement in their care due to ableism. Ableism is a kind of prejudice that impacts People with IDD in many parts of life, even in mental health care. This article proposes how an adapted Patient Reported Experience Measure (PREM) can be a response to ableism, with an impact at three distinct yet interrelated levels that reflect the parties involved in the mental healthcare of People with IDD-MH: provider, caregiver, and patient.

At the provider level, implementation of the Person Experiences Interview Survey (PEIS) offers mental health providers the opportunity to engage patients as partners in their care, thus improving patient-provider rapport and communication and ultimately amounting to better services and outcomes for People with IDD-MH.

Since the PEIS engages People with IDD-MH directly, the caregiver level of impact involves an opportunity for caregivers to properly contextualize their perspectives as complementary to that of patients and further advocate for person-centered planning and the implementation of care that will honor and meet patient needs. Caregivers are invited to reframe the role they play in interactions with providers from that of sole informant and “voice of” the patient, to acting as an advocate and additional perspective supporting People with IDD-MH to engage with their providers and practice self-determination.

The central level of impact is patients—People with IDD-MH themselves. The PEIS gives People with IDD-MH the chance to practice and develop self-reporting skills, and for their insights to inform choices made regarding their care. The PEIS evaluates experiences with mental health services and providers, and the extent to which they are easy to access, appropriate, and accountable to People with IDD.

The PEIS offers all three levels the opportunity to collaborate around patient care and operationalize the Disability Rights ethos of “Nothing About Us, Without Us.”

Plain Language Summary

Ableism is a kind of prejudice that impacts People with Intellectual and Developmental Disabilities (IDD) in many parts of life, even in mental health care. Some providers may have incorrect, negative ideas about People with Intellectual and Developmental Disabilities and Mental Healthcare (IDD-MH) experiences. In the past, providers talked to caregivers, not people with IDD-MH themselves about their healthcare needs. Caregivers’ perspectives are important, but they may be different from the person receiving services. All people with IDD-MH have a right to share their own thoughts about their mental health services. We needed an accessible tool People with IDD-MH could use to have a voice in their care. Our team included experts with and without IDD-MH to solve this problem. Using inclusive research practices, we created the Person Experiences Interview Survey (PEIS). The PEIS is adapted from another verified tool, the Family Experiences Interview Survey (FEIS.) All PEIS questions were designed to be accessible to People with IDD-MH. Both our process and the tool we created are guided by the motto, "Nothing About Us Without Us." Experts with IDD-MH were leaders in this work from the beginning. Their input made the survey more accessible, which will ensure that more People with Disabilities are able to use it. The chance to share your experiences, and to be part of the decisions that impact your life are important to self-determination and wellbeing for everyone. Whether your voice is heard and respected can have a direct impact on one’s mental health. The PEIS can help providers and caregivers support people with IDD-MH to share thoughts about their mental healthcare. Tools like the PEIS can help People with Disabilities share their experiences and be included in choices about their treatment.

Creative Commons License

Creative Commons Attribution-Noncommercial 4.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial-Share Alike 4.0 License.



To view the content in your browser, please download Adobe Reader or, alternately,
you may Download the file to your hard drive.

NOTE: The latest versions of Adobe Reader do not support viewing PDF files within Firefox on Mac OS and if you are using a modern (Intel) Mac, there is no official plugin for viewing PDF files within the browser window.