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Peer Support for Patients with Disabilities

Currently, the AODA does not have a healthcare standard. A committee is making recommendations about what a healthcare standard should include. Our recent articles have considered how the healthcare standards can build on requirements from the AODA’s existing standards. Now, we will explore new mandates that the healthcare standards could create. One mandate could implement peer support for patients with disabilities.

Peer Support for Patients with Disabilities

Peers are people who have experiences in common. Peer support involves people with the same lived experience sharing practical ideas and emotional support. For patients with disabilities, their peers are people with the same disability who can share strategies for:

  • Doing every-day tasks differently
  • Dealing with other people’s misunderstandings or negative reactions toward their disabilities
  • Advocating for accommodations in school or work

For instance, if someone is losing their vision, a peer can explain how they can learn to cook and clean without relying on sight, travel using public transportation, and use computers with assistive technology. Likewise, if someone starts using a wheelchair, they can talk with a peer about what to do if people are staring, asking questions, or trying to avoid interacting with them. Similarly, someone with an anxiety disorder could ask a peer about how to get the employment accommodations they need and deal with the stigma they could face at work.

What Does Peer Support Have to do With Healthcare?

When a patient is first diagnosed with a disability, they may not know anyone else who has one. As a result, they or their loved ones might have negative ideas about what their quality of life with a disability will be. Moreover, the healthcare professionals who treat this patient might also have little to no experience with disability. These professionals want to help such patients, but may not always know the best way to do so.

For instance, if a doctor diagnoses a young child as deaf, they might think that speechreading is the way most deaf people communicate. Therefore, this doctor would recommend this communication strategy to the child’s parents. However, the doctor is not aware that many other people who are deaf communicate better using American Sign Language (ASL). The parents might then start using a communication strategy that is not best for their child instead of exploring all of the available options and choosing the one their child responds to best.

If the healthcare standard implemented a peer support model, this patient and family could have a much more positive experience. The doctor or other health professional could contact people in the local area who were deaf and had volunteered to act as peers for people newly diagnosed. A peer would know about the different ways deaf people can communicate, demonstrate the one they use, and recommend ways the family could learn about other communication strategies. Furthermore, the peer would be an adult who has a high quality of life. The peer might have a successful career, enjoy a fulfilling social life, be an active member of their community, have interesting hobbies, and/or care for a home and family. Simply meeting this peer would show the young child’s family that their child can have a full life.

What Might a Peer Support System for Patients with Disabilities Look Like?

Many organizations that support people with different disabilities have existing peer support programs. These programs offer a variety of peer support models. For instance, peer support can take place:

  • In groups
  • Between individuals or families whom programs match
  • In person
  • Online

Organizations often match peers based on factors, such as:

  • Degree or kind of disability (i.e. totally blind, some peripheral vision, some central vision)
  • Time of disability onset (i.e. diagnosed as baby, child, young adult, adult, senior)
  • Region (so that peers can easily stay in contact and meet face-to-face if desired)

However, programs may exist in some regions or disability groups but not others, or may not have stable funding. Furthermore, healthcare professionals may not always know about these programs, or may think that enrolling should be the patient’s responsibility. Patients with negative ideas about disability might choose not to seek such an organization out. In contrast, a peer support program backed by the healthcare system would ensure that healthcare professionals knew about the benefits of peer support for patients with disabilities and where patients could find that support.