Invisible Three Percent

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Few resources available to care for people with intellectual and developmental disabilities

By Katherine O’Brien

With the trend away from institutionalization, most people with intellectual and developmental disabilities (IDD), such as Down syndrome, Autism, Fragile X, rely on general health care practice settings for medical needs. Yet, the vast majority of clinicians receive little training on how to care for these patients when they come to their office.

Not surprisingly, many physicians express a lack of confidence in their ability to provide good care to patients with IDD. A recent study found only 40 percent of physicians reported feeling confident caring for patients with IDD and only 56 percent strongly agreed they would welcome such patients into their practices.

Patients with IDD have been called the “invisible 3 percent” in health care. According to research in Ontario, they are more likely to live in poverty, have higher rates of visits to emergency departments and stays in hospitals, and receive lower rates of preventive care screening compared with those without disabilities.

Dr. Karen McNeil
Dr. Karen McNeil

“When people with IDD were moved into the community during deinstitutionalization 40-plus years ago, very few resources followed them to support their needs. So, there is a huge resource deficit at the community level,” says family physician Dr. Karen McNeil, one of Canada’s leading physicians in caring for people with IDD.

Along with her colleague, Dr. Jillian Achenbach, Dr. McNeil works Tuesday afternoons at the Dalhousie Family Medicine Adult Developmental Clinic in Halifax, which has a mandate to support family physicians in the community in their provision of care to patients with developmental disabilities. Such support could include assistance in assessing and managing behavioural issues.

Drs. McNeil and Achenbach typically schedule three one-hour visits for their patients, about half of whom are persons with autism. The other half have genetic disorders, like Down Syndrome or Fragile X Syndrome, have been affected by events in utero, or do not have a definitive diagnosis.

“We have the luxury of time and that’s key,” says Dr. McNeil. As the Health and Disability: Partnerships in Health Care research paper points out, people with intellectual disabilities often require more time for consultations because of the complexity of health and social concerns, as well as communication, cognitive and physical difficulties. Time pressures can undermine effective communication and result in consultations focusing on acute presenting problems instead of preventive health care, the paper notes.

At the Dalhousie Clinic, the first interaction with patients is an intake call to find out their past medical history, developmental history, birthing history, functional abilities and communication needs. This call gives the physicians clues as to how to set up the visit in a way that alleviates potential anxiety for the patient. If a patient is bothered by loud noises, they try to ensure there isn’t a crying baby in the next room. Likewise, if a patient is sensitive to fluorescent lights, they try to change the lighting.

Keeping anxiety in check

Dr. McNeil understands that medical appointments can raise her patient’s anxiety levels. She encourages her patients to breathe deeply before and during in-person visits. She uses this relaxation technique herself, aware that her patients will be sensitive to her own anxiety.

Family doctors most frequently refer patients who have complex conditions because of “behaviours that challenge” — that is, the behaviours challenge the observer to determine what they are communicating — says Dr. McNeil, who is also an Assistant Professor of Medicine at Dalhousie University. Many family physicians are uncomfortable managing behaviors associated with IDD, she adds. She often collaborates with family members, caregivers or disability support workers — ” the eyes on the ground”— to help her figure out what people are communicating with their behaviour.

Dr. William F. Sullivan
Dr. William F. Sullivan

In his experience, behaviours that challenge are typically a sign of underlying distress, says Dr. William F. Sullivan who, until 2021, was the Clinical Lead for the Developmental Disabilities Primary Care Program at Surrey Place in Toronto. Patients with IDD have difficulty expressing distress related to their illness or past traumatic experiences with health care could affect their response to proposed treatments, he said.

Sometimes, he says, distressed behaviour manifests as an imbalance in one or more dimensions of a patient’s physical, mental, social or existential well-being. He sees health as a dynamic balancing and integrating of multiple dimensions of the human personality. He recommends taking a systematic approach to asking questions about each dimension, such as the one outlined in the HELP with Emotional and Behavioural Concerns tool.

Like Dr. McNeil, Dr. Sullivan stresses the importance of developing trusting, therapeutic relationships with patients with IDD. These relationships can serve as a positive healing counterforce to any trauma patients may have experienced, says Dr. Sullivan, who is now the Joseph P. Kennedy Senior Chair in Bioethics at the Kennedy Institute of Ethics in Washington, DC. In this role, he promotes clinical-ethical healthcare of people with intellectual and developmental disabilities.

Circling around sensitive areas

During the first in-person visit, Dr. McNeil conducts a head-to-toe systems inquiry, figuring out where the patient has symptoms and where to direct the physical exam going forward. She tries to find out if patients are sensitive to touch in certain areas of their body or if certain procedures make them uncomfortable. Often, patients don’t like their ears being touched and some don’t like the deep pressure of the blood pressure cuff, she says, adding that she tries to build a rapport with patients before touching a sensitive area.

You need to be willing to go slowly, she says. “Sometimes, people can’t handle the whole physical exam at once, but you can kind of go where you need to go and then circle around to the things that got left that might be helpful,” she says. “The first visit, you might only get to put an oxygen probe on the finger and get a pulse rate, and if that’s all that can happen in that visit, that’s positive.…[The] next time they come in, it might be a stethoscope on their chest and you can listen to their heart and their lungs, and maybe the next time, you can get a blood pressure.”

A physical exam can also give doctors insight into their patient’s cognitive functioning or help them pick up issues they otherwise might have missed. For instance, during a complex neuro or musculoskeletal exam, Dr. McNeil has found that some non-verbal patients can follow instructions far better than she would have anticipated.

Dr. McNeil uses the method of communication preferred by each patient, typically giving them six to 10 seconds before moving on to the next question. She makes sure to include patients in the conversation — even if they are non-verbal — instead of just talking to their caregivers.

Dr. Sullivan says it’s crucial that doctors involve people with IDD as much as possible in making decisions regarding their health care. He points to the Decision Making: Promoting Capabilities Tool, which can help doctors assess whether a patient needs coaching to enhance their decision-making capabilities or the support of trusted caregivers to reach decisions.

Filling in the gaps

One of the biggest challenges for adults with developmental disabilities is finding resources, says Dr. McNeil, adding that many times the costs for ongoing special services can be prohibitive. In an ideal world, Dr. McNeil’s “dream team” would be comprised of an occupational therapist, a behavioural therapist, a social worker and a psychologist, as well as a physiotherapist and recreational therapist.

 The need for a team approach is typically greatest when the person with IDD is entering a new life-phase, such as transitioning to adulthood, says Dr. Sullivan, who is also a Clinical Adjunct Professor at the University of Toronto and a former staff physician at St. Michael’s Hospital Academic Family Health Team.

In Dr. McNeil’s current, unpublished research on the barriers and facilitators to providing care to patients with IDD through the lens of the periodic health check, she learned that many primary care providers do not believe their training has prepared them to work with this population. Specifically, they did not feel confident when it came to IDD-specific knowledge and skills, like managing contractures, examining people in wheelchairs or behaviours that challenge, she says.

Over the last 20 years, many comprehensive guidelines and tools have been developed to help physicians in the care of patients with IDD, including the Primary care of adults with intellectual and developmental disabilities: 2018 Canadian consensus guidelines, originally published in Canadian Family Physician. (Dr. Sullivan was the first author and Dr. McNeil was a co-author for the 2018 guidelines.) Although every patient is different and each patient has a different combination of conditions, the Surrey Place Developmental Disabilities Primary Care Program website (which publishes these guidelines and other IDD-specific resources) provides insights and evidence to support care, she says.

Dr. McNeil also suggests doctors make a list of all their patients with a developmental disability and then carve out time to offer them an annual health check. Dr. Sullivan recommends the Health Check tool, a comprehensive point-of-care assessment that can be used within the Electronic Medical Records. Physicians who work in a practice of 3,000 patients should be able to identify at least 60 such patients.

Although family doctors may not feel confident in their ability to provide care for patients with IDD, for the most part, their patients appear to be giving them high marks. “I would tell family doctors, as far as building relationships and rapport with individuals with intellectual and developmental disabilities, keep doing what you’re doing. From our interviews of people with IDD, they tell us that they love their physicians. Some report their physicians sing to them, tell them jokes, talk to them about their special interests and continue to connect with them on these topics when they come in.”

Dr. McNeil says caring for these patients may be time-consuming, but the rewards are many.

 “Working with them is an education in itself. They are great teachers.”

We encourage physicians to read the guidance provided by Surrey Place in its Communicate Care document. This tip-sheet provides information on best practices to prepare for appointments, communicate and plan interventions using a person-centred approach to shared decision making.

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