Written By: Shaila Gunn
Expert Review By: Dr. Bonita Sawatzky, an orthopaedics biomechanics researcher at iCORD spinal cord injury research center in BC
Objective 1: Determine whether a specific decline in functioning (i.e. Social, physical, or emotional) is a disability for that specific patient.
The CDC defines Disability as:
“any condition of the body or mind that makes it more difficult for the person with the condition to do certain activities and interact with the world around them.”
Simply put, it is defined by an impairment leading to activity limitation and participation restriction.
The percentage of folks with a disability, unsurprisingly increases with age, and the types of disability, according to the 2017 Canadian Survey on Disability, in order of prevalence were:
- Pain related
- Flexibility associated
- Mobility associated
- Mental Health associated
Those are the most prominent categories but they also note disability due to:
- Visual deficits
- Hearing deficits
- Dexterity problems
Please look to the show notes for a nice infographic on the 2017 data.
Now, that is super vague, and understandable how at some point in all of our lives, we or someone we love will likely experience this.
What does a person with a disability look like?
They can look like anything! Some reports state that over 60% of disabilities are actually invisible. A disability simply means that a person is impaired in their activities of daily living. This means that the disability is truly patient specific. How their condition affects their daily function and goals really varies depending upon how they have adapted to their disability or not, or what they want to do. For example, two people with the same peripheral neuropathy impairment from Type I diabetes may look at their disability totally differently. One person may be a truck driver and finds although he/she has less sensation in the feet and hands, driving is not too affected. On the other hand, a seamstress or artist may find their career is lost due to the lack of fine sensations in the hands. The latter might indicate they have a major disability. One cannot judge disability purely on disease or medical model but also understand the social model by understanding the patient’s goals. We’ll come back to this a bit later.
Thus, depending on a person’s lifestyle, a certain impairment may or may not pose a disability to them. So, in order to identify when a disability is present, you need to assess if your patients concern impacts their function in each of these areas of life:
Number 1: Social
- ‘Does this limit your ability to do the things you want to?’
Number 2: Physical
- ‘Are there any tasks that you’re unable to do that you were able to do before this?’
- ADLS and iADLs might be useful to screen for here with your handy dandy DEATH SHAFT mnemonic that we all know and love
Number 3: Emotional
- Think of the questions we ask when screening for anxiety and depression and give the patient a good ol’ FIFE.
Objectives 2: screen elderly patients for disability risks (i.e. falls, cognitive impairment, immobilisation, decreased vision) on an ongoing basis and 3: In patients with chronic physical problems (i.e. arthritis, multiple sclerosis) or mental problems (i.e. depression), assess for and diagnose disability when it is present.
Why is it so important that we screen for disability so often?
The latest data from Stats Canada found that 22% of Canadians have at least one disability, representing over 6 million Canadians, and are a significant contributor to days missed from work and poor quality of life. There are many ways we can prevent disability and support those with disabilities as we will discuss later.
There are some special groups that it is important to screen for disability more often. There are no guidelines as to how often you need to use your clinical judgement. These populations include those with chronic diseases such as arthritis, MS, and depression as well as the elderly.
Chronic illnesses often lead to disability over time, and there may be times during the illness where the disability is more pronounced than others. Arthritis and MS can lead to physical and mood related disability. Diabetes can lead to vision loss and peripheral neuropathy. Cardiovascular disease can lead to syncope and cognition impairment. These are just a few examples. You can do this by asking the questions above regarding physical, social, and emotional wellbeing in addition to a comprehensive physical exam, including screening vision, sensation, strength, reflexes, balance and mobility, and orthostatic vitals when necessary. The first indication can be how the patient walks when they come into your office. Sometimes patients will bring it up, but sometimes you may need to ask them about it directly. Ask if they have noticed any changes in their ability to do the things they want to do lately. Good thing we really get to know our patients in family practice!
For those with mental illness, screen for self-harm and suicide. Ensure they are able to meet their ADLS and IADLs. Encourage and help them to find support if they cannot. Counselling and psychotherapy should be considered in all patients, especially those with mental illness. Check out our episode on depression for more on this.
Another group that we must continually screen is the elderly. As we mentioned, disability increases with age. Age-related changes such as impaired mobility, cognition, vision in addition to our geriatric giants: the 3 d’s of depression, delirium, and dementia all contribute to disability risk.
Not only do all of these increase the risk of falling, they also decrease quality of life. In frail elderly people, a marked decline in physical and mental function can result from apparently small insults. This has been called the “domino” effect, with a small initial insult leading to a cascade of adverse events. It is important to catch these early by screening for ADL, IADLs, involving family, and straight up asking your patients about them. Age-related declines in vision and hearing are common and must be screened for with yearly eye exams and having a look inside the ears. Keep those 3 geriatric giants in mind and screen for them. We will leave links to various screening tools such as the GDS, MoCa, MMSE, and CAM score. Chronic pain including arthritis is also a huge cause of disability, especially as we age. Listen to the chronic pain and elderly podcast for an in depth approach to the treatment and evaluation of this.
Fall prevention is huge, as hip fractures can be a death sentence in the elderly. Women over age 65 and those with risk factors for osteoporosis including chronic steroid use, smoking, autoimmune disease, and fragility fractures should have a DEXA every 3 years to screen for osteoporosis. Screen for fall risks by watching how the patient moves, the use of mobility aids, and using tests such as the get up and go.
Wouldn’t it be great if we could help prevent disability related to illnesses/impairments and frailiy in our eldery. ? Oh wait..we can!
Preventative health principles apply to all patients, not just the elderly. The National Service Framework states that there is strong evidence to benefit older people from:
1. Increasing physical activity to support strength and balance and prevent sarcopenia and fragility, classically 150 minutes per week (30mins x5 days) including strength training,
2. Improving diet and nutrition (particularly increase protein and fats, and supplementation of calcium, vitamin D, and vitamin b12), and
3. Immunizations, especially for COVID, influenza, and pneumonia.
NICE has also identified 4 interventions with evidence based effectiveness including
- Strength and balance training
- Home hazard intervention and follow up
- Medication review (polypharmacy anyone?)
- Vision exams, and cardiac pacing when indicated.
In addition, encourage socialisation and other mind boosting activities such as reading. Screen for and treat chronic conditions such as cardiovascular disease, diabetes, and COPD. This is where you need to use your ability to connect interprofessional with physiotherapists, occupational therapists, kinesiologists (fitness trainers), opthamologists and others to address these issues. You personally cannot do these alone.
Check out the recently released episode on Eldery which covers their comprehensive care in more detail and the CFP frailty checklist as well as the clinical frailty score in the show notes.
Remember, disability and disability prevention is life long. It affects all aspects of care and life. Include it in all of your appointments by screening for it.
Now, it is time to get a bit philosophical. “Is a disability really a disability if we have tools in place for people to achieve tasks that they once found difficult?” For example, say I lost my leg and had access to a prosthetic or wheelchair. All places had ramps and elevators and ample space. I had all the fancy attachments for my prosthetic to run, hike, and ski. Is it still a disability?
I think this is a good time to start talking about the different models of disability: the medical model and the social model.
The medical model emphasises there being a problem with the person. There is something inherently wrong with the person that limits their ability to interact with the world we have created. It focuses on treating the person and fixing their disability so they can function near “normal” despite their disability.
What issues are there with the medical model and how might they impact a person’s health care?
Unfortunately the medical model often leads to people with disabilities feeling excluded, undervalued, and that they are the problem that needs to change in order to fit in. It emphasises that they are the problem needing to be fixed. People with disabilities don’t want to feel pitied, and this model largely comes from a place of sympathy.
On the other hand, the more favoured model of disability is the social model. The social model distinguishes between impairment and disability. The impairment is the “non-standard” state of the body, for example, missing a limb. It may or may not be seen as negative by the possessor, but simply a description of their physical or mental state. The disadvantage of a disability is caused by mainstream society and social activities that take little account of those with disabilities. In other words, we as a society have imposed the disability on them.
So, what does the social model look like in practice and what benefits does it have?
It depends on the disability! First off, it is totally appropriate to name the impairment, this is not offensive. Find out in what ways it negatively or positively impacts the person. Don’t make assumptions! Also , help to change the environment or situation so that the person is no longer disabled. If someone is in a wheelchair, it means making things wheelchair accessible, including your office! If they are deaf, it means utilising different forms of communication such as sign language or text. If they have an intellectual disability, it means communicating to them in a way that they understand. If they have poor vision, use large fonts or tactile stimuli.
It is clear that disability is something we impose on people. It is not all encompassing and depends on the situation and resources available. We can in essence make disability obsolete by making the world more accessible. Something to think about.
Objective 4: In a disabled person, assess all spheres of function (emotional, physical, social, financial, employment, and family)
People with disabilities often face unique health concerns and may require delivery of care in sometimes unique ways. In a Canadian study about physician perceptions on their capacity to offer accessible health care, 75% of physicians reported having had specific training on disabilities. When broken down, only about 50% of doctors had received training in any specific area with as little as 21% having training on working with those who are blind. 30% reported it was difficult serving those with disabilities. While most were aware of areas of their clinic that were inaccessible, 40% were unable to make these areas accessible.
What are some aspects of health care that are unique to those with disabilities?
- An estimated 24.9 – 42% of adults with disability self report depression, which is higher than the 22.8 – 27.5% in adults without disability
- Those at highest risk tend to be younger, have issues with pain, have more limited mobility, and less satisfaction with one’s social network
- The COVID 19 pandemic has impacted this by promoting isolation, disconnection, disruption of routines, and diminished health care services
- Acknowledge the fact that if someone becomes disabled either traumatically or a gradual progression with disease, there is an element of grief. Grief of what was lost. That plays a significant role in mental health and actually addressing the grief, helps the patient go through the grieving stages.
- 87% of people with disability vs 49% of those without have secondary conditions often as a result of immobility and decreased access to health care screening
- Pressure sores, especially for those who use wheelchairs or spend large amounts of time in bed, or those with peripheral neuropathy such as diabetes. The #1 reason for amputations is poorly managed diabetes.
- Increased risk of being sedentary leads to conditions such as and increased risk of cardiovascular disease, dyslipidemia, sarcopenia, or osteoporosis,
- Pain is common, and as we learned, a risk factor for depression. Check out our episode on chronic pain for more about managing pain.
- Bowel and bladder difficulties. In patients with SCI and TBI, they may require catheterization due to urinary retention and digital removal of faeces. This increases the risk of infections such as UTI’s. It is cited that the incidence of UTIs is 10.3 per1000 catheter days in those with clean intermittent catheterization. The additional time it may take to go to catheterise or have a bowel movement become a burden,
- Premature ageing and dementia are common, especially in those with intellectual disabilities.
- Infection risk- includes UTI’s as mentioned above, pneumonia if they are unable to clear their secretions or from aspiration if they have dysfunctional swallowing, pressure sores that get infected, difficulties with self care leading to infections such as staph. These days, individuals with disabilities are at increased risk of COVID-19 infection due to the need for multiple caregivers and interactions with healthcare providers
- Social issues
- Transportation – often people with disabilities need assistance for transportation thus getting to your clinic on time or at all may be challenge. Encourage your staff to be understanding.
- Education gap: adults with disability are half as likely to have university level-degrees as those without disability.
- Relationships: having a disability does affect partners and family caregivers. Don’t forget to speak to them about how the disability is affecting them. Do they need respite care? What supports can you help put into place to keep everyone healthy? Families worry about each other leading to increased stress for all parties
- The member with a disability may feel that they are a burden to their family, perpetuating poor mental health
- Another thing to consider and sense for is physical/sexual/emotional abuse
- Finances and employment
- 40% of those with disabilities are unemployed. There is also a wage gap. The 2012 Canadian human rights commission report reported that disabled men make $9557 less than age matched people without disabilities, and women make $8853 less. 14.4% of people with disabilities live in poverty compared to 10.5% of Canadians overall. The Canadian survey of disability found that the self-reported median household income for those with disabilities was just over $20000. In addition, there is a clear hiring bias against those with disabilities.
- Expenses: Disabilities can be expensive. a customized power wheelchair can be > $25,000, a porch lift >$5000. Personalised walker > $2500, modifications to the home >$20000. For a family, it can cost >$40000 per year to care for a child with a disability. On top of low income or unemployment, that can pose a real challenge. Suggesting to your patient to speak to someone who may understand the tax benefits available for people with disabilities can go a long way.
In addition to some of the more unique health conditions we just talked about, people with disabilities are at risk of all the health issues we all are! A study on physician experiences providing primary care to those with disabilities suggests that many physicians are less likely to do a physical exam, have a loss of focus on preventative medicine, and pay less attention to sexual and reproductive issues. They attribute this to not having the skills and equipment needed, not having time to focus on certain issues due to the complexity of other issues, and the common misconception that patients with diability are not sexual.
If your clinic is not set up for these exams, find a specialist or hospital centre that is and refer.
Only 40.7% of physicians reported feeling very confident that they could provide the same quality of care to those with a disability. Indeed, there is a notable disparity in the health outcomes of those with disability both due to their risk factors as described above, but also because of physicians not providing the same standard of care. In addition, barriers such as lack of accessibility both physically and due to fear of stigma prevent patients from seeking care.
What are some areas of care that we often see neglected in those with a disability?
- There are challenges to the quality of care these patients receive due to
- 1. difficulty examining because we cannot use the classic exam manoeuvres we learned in medical school.
- 2. Barriers to care including poor physical coordination, transportation, inaccessibility, feelings of being diminished.
- 3. Difficulty communicating: patients may find it hard to communicate their needs, including when they are in pain or very sick. We might need to assess for discomfort in more objective ways such as irritability, change in behaviour, sedation etc. (see AAFP article in the show notes for good table)
- Some examples include…:
- screening/prevention: paps, mammograms, other age appropriate cancer screening are all still important for people with disabilities. Don’t forget about these once they reach the appropriate age.
- Blood pressure – arm contractures may prevent providers from routinely measuring blood pressure.
- Sexual health and contraception are often not asked about. Not only do people with disabilities need the same guidance as those without, there are higher rates of sexual dysfunction, especially in those with SCI, brain injury, or mood disorders. Those with intellectual disabilities need special attention paid to them as well due to higher vulnerability and sexual abuse.
- Digital rectal exams are more likely to be deferred in the case of a presumed gastrointestinal bleed or prostate issues either due to difficulty physically performing the exam or difficulty acquiring consent
Objective 5: For patients with a disability, offer a multi-faceted approach (i.e. orthotics, lifestyle modification, time off work, community support) to minimise the impact of the disability and prevent further functional deterioration and Objective 7: Do not limit treatment of disabling conditions to a short-term disability leave (i.e. time off is only part of the plan)
It is clear that there are factors about the disability that perpetuate illness. Obviously, one way we can help out is by getting ourselves more educated about disability, accessibility, and increasing our exposure to patients with disability so we feel competent in all aspects of their care. It is also important that we work with the person with the disability in preventing disability-related adverse outcomes such as pressure sores, contractures, and chronic pain in addition to encouraging physical activity. Not only can this decrease the level of disability related to the impairment, but it can also improve other health outcomes.
In what ways can a physician support this process?
- Understand the patient’s goals and work towards those together. Find out what their life looks like? What kind of support do they already have and what do they need? This will help you put a team together to support that person’s needs.
- While it might seem obvious that these supports are needed for long term disabilities, they are also beneficial for disabilities you may see as short term, such as a mild workplace injury. Remember time off work is only part of the rehabilitation plan. It is what is done during time off work and how someone returns to work that will benefit them in the long term.
- Interdisciplinary team
- Work with your patient to become aware of the resources available in their community for employment, exercise programs, transportation, home care etc Disease specific organisations, such as the Spinal Cord Injury BC, are incredibly helpful and provide peer support as well.
- Lifestyle modifications – PTs and OTs are excellent resources for this
- Treatment of unstable medical conditions and any treatable problems contributing to the disability.
- Reviewing drug treatment (including polypharmacy).
- Early mobilisation.
- Nutritional support.: Refer your patient to a dietician if needed.
- If it is a work-related injury, introduce a return to work plan. Returning to work is essential for patients financially, mentally, and socially. Work with the patient and their employer to assess what activities they can safely achieve and how this might fit into their workplace.
Of course the resources are completely region specific, but we have included some that pertain to those of you in BC in the show notes.
Wow, we have covered a lot. Now that we understand how complex the topic of disability is, how many people are impacted by it, and how all of us are at risk, we need to talk about how to prevent disability.
Objective 6: In patients at risk for disability (i.t. Those who do manual labour, the elderly, those with mental illness), recommend primary prevention strategies (i.e. exercises, braces, counselling, work modification)
Of course not all disabilities are preventable, but many are. Notably, work-related injuries and motor vehicle accidents
How can we support patients in preventing injury at work?
Get to know your patient’s work and risks associated with it, especially those who do manual labour and the elderly. 84% of workplace injuries are caused by overexertion, slips/trip/falls, and contact with objects and equipment. If a patient works with heavy machinery, avoid prescribing sedating medications, especially before work. Screen for OSA, as this doubles the incidence of workplace accidents. Recommend modifications as applicable. For example, in patients who perform heavy lifting, instruct them on appropriate lifting techniques. In patients who perform repetitive movements, encourage them to perform functional exercises and stretches to prevent injury. Physiotherapy and other allied health professionals such as occupational therapy may be useful as well. In patients with preexisting injury, recommend work modifications or devices such as a brace. We have attached a document on preventing work-related injuries in the show notes.
Car accidents are another huge area of preventable disability. It is important to screen patients for safe driving practises. Judiciously prescribe sedating medications, and educate those who are on them on how to use them safely. In your patients with chronic diseases including diabetes, screen for peripheral neuropathy and visual impairment. In patients with CVD, screen for syncope and dizzy spells. As patients age, screen for memory loss. Essentially, for all chronic conditions your patient may have, consider how it may impact their ability to drive safely and screen for it. Ensure all patients know they should not drive under the influence of any substances. Know medical conditions such as seizure and stroke that have driving restrictions. If you have concerns, contact your local driving agency. This is important for the patients and the general public’s safety. We have linked BC’s drivers medical form and form on how to report conditions affecting fitness and ability to drive as examples.
Dr Sawatsky’s Three Big Take-Aways on Disability
- Remember that all your patients have lives that are often full and meaningful. Listen to the goals of each patient and work with them to reach those goals, no matter of ability level. Do not make assumptions based on their medical diagnosis. Impairments affect each one uniquely.
- You do not have to be expert at everything. Use your ability to connect with medical and allied health professionals to meet these often needs of your patient. Ask your colleagues around you about potential resources to direct your patients if you are in unfamiliar territory.
- Work with the patient to address their needs. They are often very creative and adaptive. They may need support and guidance but often they are the true experts of their disability and can co-direct the care with you and the team. Put them on the patient centre care team.
- https://www.cfp.ca/content/65/1/74 Frailty 5 Checklist – teaching primary care of frail older adults
- Krahn GL, Walker DK, Correa-De-Araujo R. Persons with disabilities as an unrecognized health disparity population. Am J Public Health. 2015;105 Suppl 2(Suppl 2):S198-S206. doi:10.2105/AJPH.2014.302182
- Goering S. Rethinking disability: the social model of disability and chronic disease. Curr Rev Musculoskelet Med. 2015;8(2):134-138. doi:10.1007/s12178-015-9273-z
- R. Casey. Disability and unmet health care needs in Canada: a longitudinal analysis. Disabil Health J, 8 (2) (2015), pp. 173-181, 10.1016/j.dhjo.2014.09.010
- HF de Vries McClintock, et al. Health care experiences and perceptions among people with and without disabilities Disabil Health J, 9 (2016), pp. 74-82
- Bachman, S. S., Vedrani, M., Mari-Lynn Drainoni, Tobias, C., & Maisels, L. (2006). Provider perceptions of their capacity to offer accessible health care for people with disabilities. Journal of Disability Policy Studies, 17(3), 130-136.
- McColl MA, Forster D, Shortt SE, et al. Physician experiences providing primary care to people with disabilities. Healthc Policy. 2008;4(1):e129-e147.
- Minihan, Paula M. PhD, MPH; Robey, Kenneth L. PhD; Long-Bellil, Linda M. PhD, JD; Graham, Catherine L. MEBME; Hahn, Joan Earle PhD; Woodard, Laurie MD; Eddey, Gary E. MD on behalf of the Alliance for Disability in Health Care Education Desired Educational Outcomes of Disability-Related Training for the Generalist Physician: Knowledge, Attitudes, and Skills, Academic Medicine: September 2011 – Volume 86 – Issue 9 – p 1171-1178 doi: 10.1097/ACM.0b013e3182264a25
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