People with intellectual and developmental disabilities (IDD) experience systemic barriers that decrease healthcare access, including challenges navigating the system and finding the proper support. However, communication barriers are often chief among them. Patients often need more time and help to explain their healthcare issue(s). Additionally, they may also need support in understanding what the doctor is explaining. However, this becomes a challenge if a doctor has a busy schedule.
“What is difficult is there’s nobody in the waiting room. I miss interacting with people in the waiting room, saying “Hi there!” to go see the doctor. I’m not getting the social aspect. The doctors are really nice and they’re really helpful. But I would like to get that social aspect from the waiting room,” says Victor Pereira, Patient Advisor at Centre for Addiction and Mental Health (CAMH), Toronto.
This social aspect points to being and feeling better understood by the healthcare provider. When a healthcare provider communicates with their patient at every visit level, it strengthens the doctor-patient relationship in care and treatment. It also provides rich insight for the doctor and reduces fear and distress for the patient.
Advancements in the healthcare system call for new solutions. So, how do we address systemic barriers and create concrete solutions?
The 2018 Canadian consensus guidelines for primary care of adults with intellectual and developmental disabilities were updated to include and reflect more perspectives, knowledge and ideas from people with IDD and the people who support them, such as family members and caregivers. It is invaluable knowledge: Who better to tell healthcare providers what people with IDD need than the people themselves?
“There’s this notion of nothing about us without us. I think we need to walk that talk, so to speak. I think it’s very important for self-advocates to be involved in every process of the work we do. When you have self-advocates inputting from the point of developing the tools, you really get this perspective only they can provide,” says Irfan Jiwa, MD, Research Analyst and patient advisor coach at CAMH.
These perspectives pave the way for the development of better healthcare tools, such as and , both published by the Developmental Disabilities Primary Care Program of Surrey Place Toronto, in collaboration with CAMH.
“The vision for these tools is to facilitate all types of healthcare conversations and interactions. The biggest advantage is that it allows for a lot of preparation on the part of self-advocates, their families and caregivers. As well, if healthcare providers are amenable to this, receiving those tools ahead of time allows them to prepare for the appointment too. That will serve both sides,” says Jiwa.
The About My Health tool is for people with IDD to use when meeting with a new healthcare provider for the first time. The tool can serve as a record that can be helpful under certain circumstances, such as switching healthcare providers. It helps doctors to get to know their patients with IDD better. It increases the chances of a successful healthcare visit. The form includes space for sharing likes and dislikes, communication strategies and other helpful suggestions. About My Health is available in a printed form and an e-form.
The My Health Care Visit tool is designed for people with IDD to complete with their doctor. It’s a form they can fill out, alone or together with a caregiver, in preparation for their visits to know precisely what they want to communicate to their healthcare provider. My Health Care Visit is divided into three sections. The first section requires an explanation of the purpose of the healthcare visit; the second section leaves room for a summary of what the patient discussed with their doctor; the third section is a place to reflect on what went well and if there are any ways to improve future visits. The form can be printed or accessed electronically.
“The tools help bridge the gap between doctors and patients. They help people with IDD and people with special needs [reject] this stigma of how you’re supposed to be afraid of doctors. At the end of the day, [doctors are] just trying to make your life easier. If you can use the tools to help, make your life easier, that’s just a win-win in all directions,” says Pereira.
Both tools were co-designed by doctors like Jiwa and self-advocates like Pereira. The process of creating the tool included numerous consultations with stakeholders. The feedback from these consultations made for a rich testing environment because the talks happened throughout the design and development processes. When the tools were completed, self-advocates were invited back to help spread the word about the tool in webinars and conferences.
More often than not, it wasn’t the doctors who convinced other doctors that these tools were necessary. It was the self-advocates. At one particular conference, Victor convinced a family physician that the About My Health and My Health Care Visit were essential tools worth trying. It all came down to lived experience. Victor told his story, and it made a significant impact on the family physician, who now understood that these tools could help everyone in addition to people with IDD.
“When you have a lived experience expert telling a story versus someone like myself telling a story, there’s a difference in impact. We’ve seen that in action,” says Jiwa.
When people with IDD are included in making healthcare more accessible, systemic barriers can be addressed directly. Furthermore, it places them at the centre of their care. The Developmental Disabilities Primary Care Program and Canadian guidelines promote primary care that is person-centred, relational, and integrated. The About My Health and My Health Care Visit tools encourage this approach, but self-advocates truly inspire this approach.
As Victor says, “I think doctors need to realize that they have so much more time if they can just read your information and get to know you on a personal level safely and calmly. That’s just a win for everybody.”