at CAMH, the hardest part of the job
is seeing, first-hand, all the barriers that
people with developmental disabilities and
their families encounter as they navigate the
health care system.
“It can be hard to watch,” says Dr. Lunsky.
“We know that we can do so much more for
Dr. Lunsky, who is part of CAMH's Underserved Populations Program, works with adults with developmental disabilities such as autism or Down syndrome. Time and again, she has seen families struggle to find health care providers and access programs that can accommodate the complex needs of their loved ones. Too often, these adults are squeezed out of the system and go into crisis.
Under the umbrella of increasing accessibility to care for individuals with developmental disabilities, Dr. Lunsky has worked tirelessly at changing attitudes, training practices and the system.
Dr. Lunsky leads the Health Care Access Research in Developmental Disabilities (H-CARDD) program, which has recently garnered support from the Canadian Institutes for Health Research and the Ontario Ministry of Health and Long-term Care. Through Ontario’s Health System Research Fund, the Ministry recently committed to providing 1.8 million dollars, over the next three years, to expand this research program.
With this support, Dr. Lunsky and her colleagues will investigate healthcare accessibility in four vulnerable subgroups of people with developmental disabilities: aging adults, women, adults with mental health problems, and youth transitioning into adult services.
“These families often have to jump through so many hoops to get care,” says Dr. Lunsky. “Our goal is to work with clients and families sooner, before they burn out and before they end up in the hospital.”
Best practices for emergency and primary care
A priority for the H-CARDD team is exploring how health care can be improved for adults with developmental disabilities, especially in terms of emergency department and primary care.
The team's previous research showed that adults with developmental disabilities visited emergency departments much more often than other adults, but that such visits were less likely when good primary care and crisis plans were in place.
From her experience, Dr. Lunsky also believes better training for those working within emergency departments is key to improving care.
“We don’t offer adequate training to health care providers,” explains Dr. Lunsky. “How can we expect clinicians to work well with individuals with developmental disabilities when they aren’t trained on what to expect or what to do?”
Dr. Lunsky’s research team has also identified some big-picture, system-level issues. Emergency department data has suggested that the complex needs of adults with both a developmental disability and mental illness — also known as dual diagnosis — are not being well met by community services.
“It could be that these individuals have no place else to turn but the emergency department,” says Dr. Lunsky. “We need to think more about barriers to care and what kind of protocols to introduce so that they know where to go to get help.”
Accordingly, the H-CARDD program is working directly with staff in emergency departments, as well as Family Health Teams to implement practice changes. Through this interaction, Dr. Lunsky and her team will learn the best ways to move research into practice, with the ultimate goal of improved care.
An example of this work includes having all adults with developmental disabilities take part in an annual comprehensive health examination, as outlined in Canada's Developmental Disability Primary Care Guidelines
. Manageable issues, such as having a build-up of ear wax, constipation or low blood sugar, can lead to significant distress if not identified early — and can lead to worse problems in clients who might not be able to articulate their pain or discomfort.
Partnering for progress
Even in the midst of her research, Dr. Lunsky has not lost sight of clients and families.
The H-CARDD program is developing a website with online resources and tools for clients, families, and health care providers. It includes how-to videos
for clients and family members on preparing for visits to the hospital, the emergency department and outpatient care. These are available on CAMH’s Knowledge Exchange site
. Dr. Lunsky has also published a caregiver guide, Dual Diagnosis: An information guide
Most importantly, Dr. Lunsky and the H-CARDD team are staying true to their central purpose of partnering for progress.
“Any efforts we take to improve the health care system need to be a partnership between people with developmental disabilities, their families, clinicians, policy makers and researchers,” explains Dr. Lunsky. “We learn the most by listening to these incredibly resilient families. They are an integral part of any solution.”