Understanding and Communicating Key to Quality Health Care for People with Disabilities
By Karen Green McGowan, RN, CDDN
Let’s face it, nobody seems to be getting any younger these days, including people with disabilities. That makes access to competent health care a pretty big deal for all of us. The ability to communicate our symptoms to the physician is critical, even if we need an interpreter to speak for us. Most everyone knows how important early diagnosis is to the outcome of an illness.
Many people with complex disabilities have been aspirating (swallowing down the wrong tube) for years. While you and I might promptly seek medical attention for this uncomfortable symptom, persons who cannot speak might only cough, or refuse to eat offending substances to let us know that something is awry. The earlier that pattern is identified and fixed, the better the person’s quality and quantity of life.
The ability to keep moving as we age is an important predictor of our life expectancy. Finding a way for those with significant physical problems to alter gravity’s impact on their body parts is the biggest challenge in any service. Remember, gravity is the factor that causes all of our soft tissue to gradually slide to the floor as we age. For those who don’t move on their own, it is the major contributor to all kinds of deformity that can then alter the function inside the body.
Now that the majority of individuals with significant disabilities are living outside of state-operated congregate care settings, we all have to face the (sometimes daunting) task of finding competent health care in a community that may judge the person on the basis of how he/she looks: “Mortality among people with severe cognitive impairments as well as allied medical conditions who move from institutions to the community has been the most recent issue facing states.” (Hayden, 1998).
This has led to some fairly outrageous conclusions about where people ought to be living, namely, that institutions are somehow safer for persons with complex health care issues. Sometimes we forget that many congregate care settings were sued into doing the right thing, and that competent health care was often a direct result of class action litigation. The question we need to ask, not just for people with disabilities, but for all of us, is a bit more complex. Just what does it take to assure that all of us have access to health care that assures an adequate level of wellness and safety? Being old may determine how aggressively we are treated and so too, unfortunately, may a person’s physical appearance affect these decisions. Having someone in our lives who isn’t paid to care about us is another factor that can profoundly impact on decisions about health.
One study established that early identification of health destabilization was the major factor in reducing preventable deaths in persons with complex physical disabilities (Hodges, 1984.) This study demonstrated that the following contributed significantly to effective health care management:
• Having a person with sufficient skill, opportunity and authority to implement effective health care management
• Obtaining health care information sufficient to detect and act upon early patterns of health deterioration
• Having adequate health care advocacy to provide to persons with any level of health risk the same care that would be provided to persons without disabilities
“The ability to keep moving as we age is an important predictor of our life expectancy.”
Most persons with profound physical and intellectual disabilities have no effective means of telling their caretakers when they do not feel well. Most community physicians and nurses have no formal training in how to assess individuals without verbal communication skills. Worse yet may be a widely-held belief on the part of the health care practitioner that these individuals may not have a life worth living. Withholding of treatment (widely practiced as Do Not Resuscitate) may be practiced more frequently than appropriate.
Those persons who have learned to communicate creatively when they cannot speak can use self-injurious behavior, such as head banging or hands-in-mouth, to tell us when they have a stomach ache. We may wind up giving these creative communicators drugs that slow down the GI tract, such as Risperdal and Prozac because we perceive them as “behavior problems.” When the person winds up with a bowel obstruction, diagnosis may be delayed because the unique form of communication is being treated rather than the root cause.
Hayden, M.F. Mortality Among People with Mental Retardation Living in the United States: Research Review and Policy Application. Mental Retardation, Vol 36, No 5, October 1998, p. 345
Brehon Institute for Human Services THE HODGES REPORT, Tallahassee, FL: January, 1984