New patient tool helps improve access to primary care for people with developmental disabilities

Ocean Community

We are calling for physicians to participate in the early access period of the About My Health and My Health Care Visit eForms for patients with intellectual disabilities. If you are interested in providing feedback, prototypes of the forms are now available in the Ocean library by searching for “New – Surrey Place” and there will be a survey you can complete. If you have questions, please contact Heidi Diepstra at [email protected].

For many of the more than 60,000 adults with intellectual and developmental disabilities in Ontario, their primary care doctor plays an important role in their health. As a group, people with intellectual disabilities experience poorer health and health care access compared to their peers without disabilities for a number of reasons, including:

  • Their health issues are often complex;
  • Approximately 1 in 2 experience a mental health problem sometime in their life;
  • While they visit their family physician just as often as people without disabilities, they are less likely to receive key preventive care like cancer screenings or a comprehensive health check.

Both patients with intellectual disabilities and physicians indicate that some of the main barriers to good care are communication challenges and the lack of time during a health care visit. These issues have become even more of a challenge during the COVID pandemic, when primary care moved from in-person to virtual care.

To address these issues, experts in health care for people with intellectual disabilities at Surrey Place and the Centre for Addiction and Mental Health, Toronto, teamed up with self-advocate groups, families, and support workers to develop tools that empower patients to share health information with their physician in advance of a doctor’s visit. The About My Health form is a tool to share key information about the person’s health, medications, specific accommodation needs and what helps them feel at ease during a health care visit.

Patients can use the My Health Care Visit form to prepare for a visit with their doctor for specific health issues, and to record follow up information. It empowers people to communicate their health issue in a brief health visit.

These tools have been made available on the Ocean Platform with the support of Cognisant Causes, a charitable program by CognisantMD that provides resources – in the form of project-based technology and marketing support – to non-profit healthcare organizations at no cost.

If you’ve used these tools and would like to provide feedback, please complete the survey:

Here is what people have to say about these tools:

“If I am going to see a new doctor, I may get nervous about what I need to say. A lot of times my words don’t come out too clearly. So I stumble over my words. Having the tools really helps out a lot because you just hand it to them, they go over it, and if they have any questions that they can ask you and you’ll feel less nervous. I know I feel less nervous because I don’t have to tell my whole story because it’s written there.”
– Erica Streisslberger, self-advocate/patient

“The tools are here to help you stay on point and on task, they are here to help you with what you need to do. Get in and get out with minimal stress for you and your doctor. So if you ever have stress about timing, you can fill out the tool beforehand, maybe a week before you go to the doctor and then you will have a type of safety-net so you can go to the doctor with confidence and say “here you go, here is my information, here’s what helps me calm down, and here’s what stresses me out.”

– Victor Perreira, self-advocate/patient

Having my patients and their caregivers complete the “About my Health” form with my assistance has been an excellent way to summarize their health issues in a clear and easy-to-find way. I encourage my patients to bring this completed form to any healthcare visit (especially the emergency room or a new specialist’s office) so that the treating providers can better understand their history and unique needs.

– Dr. Dara Abells, family physician at Forest Hill Family Health Centre and Surrey Place, Toronto, with expertise in the care for patients with intellectual disabilities

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