Perspectives about support challenges facing health workers assisting older adults with and without intellectual disability in rural versus urban settings in Australia

Rafat Hussain , Matthew P. Janicki , Marie Knox, Stuart Wark & Trevor Parmenter (2017): Perspectives about support challenges facing health workers assisting older adults with and without intellectual disability in rural versus urban settings in Australia, Journal of Intellectual & Developmental Disability, DOI: 10.3109/13668250.2017.1326589

Source: Journal of Intellectual & Developmental Disability


Aims: Life expectancy for both sexes in Australia exceeds 80 years, with individuals with intellectual disability also increasingly living into older age. This research aimed to comparatively examine perceptions of staff supporting either older adults or age peers with lifelong intellectual disability.

Methods: This project asked 420 medical, health, and support workers about training adequacy, health services access, and trigger points for premature institutionalisation. This paper is based on a subsample of 196 respondents who provided quantitative and qualitative responses.

Results: There was considerable variation in confidence in supporting ageing individuals, while only 23.7% of doctors reported their training was adequate to support adults ageing with intellectual disability. A lack of services and poor carer health were identified as triggers for premature institutionalisation.

Conclusions: The study revealed key differences in staff perceptions of support provision and training adequacy when comparing ageing individuals with intellectual disability to the general ageing population.

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Doctors With Disabilities: Why They’re Important – The New York Times

There’s good reason to believe a more diverse work force — one that includes doctors with disabilities — would be good for patients and doctors. Patients of various backgrounds tend to feel more comfortable with physicians like them, and that’s true for people with disabilities as well.

Source: Doctors With Disabilities: Why They’re Important – The New York Times

More than 20 percent of Americans — nearly 57 million people — live with a disability, including 8 percent of children and 10 percent of nonelderly adults. And while the medical profession is devoted to caring for the ill, often it doesn’t do enough to meet the needs of the disabled.

Read entire article… Doctors With Disabilities- Why They’re Important – NYTimes


Dr. Gregory Snyder, a physician at Brigham and Women’s Hospital in Boston, has paralysis in his legs after a spinal cord injury during medical school. He uses a wheelchair and says that he’s sometimes mistaken for a patient while working. But that’s not necessarily a bad thing.

“It reminds us that at some point we’ll all be patients,” he said. “And perhaps, when we least expect it.”

Over the course of our lives, most of us will acquire a disability: More than two thirds of Americans over the age of 80 have a motor, sensory or cognitive impairment.

Dr. Snyder remembers the difficulty of adjusting to life as a patient after his accident, and the long road to recovery. But he says his disability and rehabilitation have fundamentally changed the way he cares for patients — for the better.

“I would have been this six-foot-tall, blond-haired, blue-eyed Caucasian doctor standing at the foot of the bed in a white coat,” he said. “Now I’m a guy in a wheelchair sitting right next to my patients. They know I’ve been in that bed just like they have. And I think that means something.”

There’s good reason to believe a more diverse work force — one that includes doctors with disabilities — would be good for patients and doctors. Patients of various backgrounds tend to feel more comfortable with physicians like them, and that’s true for people with disabilities as well.

Increasing the number of doctors with disabilities would improve health care.

Increasing the number of doctors with disabilities would improve medical care, not weaken it

Source: Increasing the number of doctors with disabilities would improve health care.

We Need More Doctors With Disabilities

One-fifth of all Americans have a disability, but less than 1 percent of doctors do. That’s slowly starting to change—to the benefit of medicine and patients.

When Dr. Bliss Temple was in training, she remembers being in an elevator wearing her white coat and her stethoscope when a patient who was using a wheelchair got in. Temple is paraplegic; she also uses a wheelchair.

“We checked out each other’s chairs, and then he looked at me and said, ‘Oh! You’ve joined the enemy.’ ”

More than 56 million Americans have a disability of some kind—nearly a fifth of the country. Yet a vanishingly small percentage of doctors have a disability of any kind—estimates vary and data is scant, but the consensus suggests that the number is somewhere around 1 percent. The problem starts at the tip of the pipeline: People with disabilities make up somewhere between 0.3 and 2.7 percent of medical school classes—estimates vary, but even at the high end, this makes them one of the most underrepresented groups in American higher education.

The divide is stark, and the consequences can be severe. Americans with disabilities are more likely to be sick but less likely to get adequate health care. This is partially because having a disability increases the likelihood of being poor or being unable to access care. But it has also created a system in which vulnerable patients feel their doctors misunderstand their bodies and their lives.

Colleagues sometimes tell Temple that they don’t think of her as a person with a disability, even though she’s spent her career at San Francisco General Hospital working on health care access and social justice for people with disabilities, including stints at the World Health Organization and consulting for the Department of Health and Human Services. She’s no stranger to the stereotype that doctors don’t have disabilities. Doctors take care of us in our most critical moments, when their ability to do their jobs can make a mortal difference. We want doctors who look like they can rush us to the intensive care unit like it’s 45 minutes through an episode of a medical drama.

But in recent years, disability activists and policy experts have argued—persuasively, according to many court cases—that disability does not prevent medical students from learning how to provide excellent medical care, particularly when they can receive assistance from increasingly adept technical tools. Not only is denying their right to train as doctors illegal; it inadvertently denies the many Americans with disabilities the benefit of having more medical professionals who understand them.

Additional Resources for Technical Standards and Accommodations

The struggle for representation in medicine starts with who gets to go to medical school in the first place. For most aspiring doctors, medical school admission is merely a matter of excelling at coursework, research, volunteering, the Medical College Admission Test, personal essays, and interviews. Even then it’s tough going—most medical schools have admission rates in the low single digits. But students with disabilities have an additional obstacle after they’ve been admitted: They must prove to the school’s administrators that they can meet the physical requirements of medical education. These expectations, codified into “technical standards,” are often broken down into five essential functions: observation, communication, motor function, conceptual and quantitative analysis, and social skills. The exact standards vary by school and curriculum. For example, MD candidates at one school may have to personally deliver 10 babies to pass an obstetrics rotation while candidates at another only have to assist. This idiosyncrasy wouldn’t matter to most applicants, but it can disqualify someone with limited arm mobility, no matter how dazzling their application. After getting in on the strength of their grades, scores, and essays, students can find themselves caught between forfeiting their admission and signing a document pledging they can perform medical procedures with accommodations that they don’t know for sure that they’ll receive.

For years, medical schools have defended their technical standards by arguing that they protect patient safety and ensure academic consistency. Reformers argue that these policies violate federal law and promote a culture of prejudice. In 1973, the Rehabilitation Act prohibited universities, and other institutions receiving federal funding, from discriminating against applicants with disabilities who were “otherwise qualified.” But the law’s vague language left it open to evasion. In 1990, the Americans With Disabilities Act, or ADA, reinforced and expanded the scope of the Rehabilitation Act, affirming that in higher education and employment, people with disabilities could not be “excluded, denied services, segregated or otherwise treated differently than other individuals because of the absence of auxiliary aids and services,” unless the university can show that accommodations would “fundamentally alter” the education they offer or result in “an undue burden.”

Perhaps unsurprisingly, this federal law compelled only a modest increase in the number of students with disabilities graduating from medical school. In 1979, six years after the Rehabilitation Act’s passage, the Association of American Medical Colleges, or AAMC, published a technical standards template to guide medical schools as they began to read applications they could have quickly rejected a few years earlier. After the ADA was passed, many medical schools complied with the law by simply copying the AAMC’s 1979 guide near-verbatim and haven’t changed them much since. At the time, the AAMC seemed more concerned about preventing lawsuits than inclusion. “In the admissions process, the burden of proof is on the applicant to demonstrate that he/she can meet the essential 5 functions of the program,” an AAMC memo from 1993 read. “How much accommodation may be too much is a matter which will be tested in the courts. The safety of patients involved in student education is of paramount importance.” To this day, many schools leave the burden on aspiring physicians with disabilities.

Opioid Prescribing: Where you live matters

Source: Opioid Prescribing: Where you live matters

Download Opioid Factsheet

The amount of opioids prescribed in the US peaked in 2010 and then decreased each year through 2015. However, prescribing remains high and vary widely from county to county. Healthcare providers began using opioids in the late 1990s to treat chronic pain (not related to cancer), such as arthritis and back pain. As this continued, more opioid prescriptions were written, for more days per prescription, in higher doses. Taking opioids for longer periods of time or in higher doses increases the risk of addiction, overdose, and death. In 2015, six times more opioids per resident were dispensed in the highest-prescribing counties than in the lowest-prescribing counties. County-level characteristics, such as rural versus urban, income level, and demographics, only explained about a third of the differences. This suggests that people receive different care depending on where they live.  Healthcare providers have an important role in offering safer and more effective pain treatment.

Healthcare providers can:

  • Follow the CDC Guideline for Prescribing Opioids for Chronic Pain, which includes recommendations such as:
    • Use opioids only when benefits are likely to outweigh risks.
    • Start with the lowest effective dose of immediate-release opioids.  For acute pain, prescribe only the number of days that the pain is expected to be severe enough to require opioids.
    • Reassess benefits and risks if considering dose increases.
  • Use state-based prescription drug monitoring programs (PDMPs) which help identify patients at risk of addiction or overdose.

Ensuring Accessibility of Health Care Facilities and Providers

Source: CMS.Gov & Florida Disability and Health Program

The CMS Office of Minority Health Issue Briefs offer insight and examination into a variety of health and health disparity topics. The briefs are a concise summary of a particular issue and examine policies that impact the quality of and access to health care for minority and disadvantaged populations. Issue Briefs evaluate CMS programs, including Medicare and Medicaid, to include recommendations and suggestions relating to the issue at hand.

Adults with disabilities are almost twice as likely as other adults to report unmet health care needs due to problems with the accessibility of a doctor’s office or clinic.9 Structural, financial, and cultural barriers persist for people with disabilities when trying to access care.10 Many individuals with mobility disabilities face difficulties locating or otherwise traveling a burdensome distance to physically accessible services.11 Providing equal access to health care for people with physical disabilities involves many factors including, but not limited to:

  • Facility access. This includes accessible routes from parking or bus stops into the building, accessible parking, accessible entry doors with the required clearance width, clear floor space, and maneuvering clearance, accessible restrooms, and accessible signage for people who are blind or have low vision.12
  • Health care services access. This includes accessible scales and exam tables to facilitate a medical exam, accessible treatment and diagnostic equipment (including infusion chairs, mammography machines, and radiology equipment), appropriate resources for individuals with visual and auditory disabilities, and staff trained to assess patient needs and safely help patients move in between and transfer on and off medical equipment.

Download Issue-Brief-Physical-AccessibilityBrief

Download: In-depth-guide-on-accessibility-for-healthcare-facilities


Racial Disparities in Age-Specific Mortality Among Blacks or African Americans — United States, 1999–2015 | MMWR

Racial Disparities in Age-Specific Mortality Among Blacks or African Americans — United States, 1999–2015

Source: Vital Signs: Racial Disparities in Age-Specific Mortality Among Blacks or African Americans — United States, 1999–2015 | MMWR


Background: Although the overall life expectancy at birth has increased for both blacks and whites and the gap between these populations has narrowed, disparities in life expectancy and the leading causes of death for blacks compared with whites in the United States remain substantial. Understanding how factors that influence these disparities vary across the life span might enhance the targeting of appropriate interventions.

Methods: Trends during 1999–2015 in mortality rates for the leading causes of death were examined by black and white race and age group. Multiple 2014 and 2015 national data sources were analyzed to compare blacks with whites in selected age groups by sociodemographic characteristics, self-reported health behaviors, health-related quality of life indicators, use of health services, and chronic conditions.

Results: During 1999–2015, age-adjusted death rates decreased significantly in both populations, with rates declining more sharply among blacks for most leading causes of death. Thus, the disparity gap in all-cause mortality rates narrowed from 33% in 1999 to 16% in 2015. However, during 2015, blacks still had higher death rates than whites for all-cause mortality in all groups aged <65 years. Compared with whites, blacks in age groups <65 years had higher levels of some self-reported risk factors and chronic diseases and mortality from cardiovascular diseases and cancer, diseases that are most common among persons aged ≥65 years.

Conclusions and Implications for Public Health Practice: To continue to reduce the gap in health disparities, these findings suggest an ongoing need for universal and targeted interventions that address the leading causes of deaths among blacks (especially cardiovascular disease and cancer and their risk factors) across the life span and create equal opportunities for health.

Lessons from High Performing Hospitals: Achieving Patient and Family-Centered Care

Source: Lessons from High Performing Hospitals

Lessons from High Performing Hospitals: Achieving Patient and Family-Centered Care

Patient-Centered Care In A Nutshell

  • Providers partner with patients to anticipate and satisfy the full range of patient needs and preferences
  • Hospitals support staff in achieving their professional aspirations and personal goals

A Consistent Finding: It’s All About Culture

  • High performing sites credited their HCAHPS success not to specific practices, but to a well-established culture of patient-centered care
  • High performing sites had implemented a comprehensive approach to patient engagement, family involvement and staff engagement
  • Improvement Guide reflects this key finding, providing guidance for implementing practices within a broader framework of organizational culture change

“Bite Sized” Exercises and Discussion Prompts to Reinforce Culture


“Bite Sized” Exercises and Discussion Prompts to Reinforce Culture

Below is a collection of discussion prompts and exercises designed to engage the hearts and minds of all members of the team in the practice patient-centered transformation effort. These exercises are designed to be concise enough to be incorporated into brief huddles or team meetings. Specifically, these exercises are designed to:

  • Help all members of the team reconnect to the joy of practice
  • Re-sensitize them to the patient experience.
  • Learn specific techniques for connecting with patients, remaining present and delivering care with compassion – even when it is most difficult to do so.
  • It is recommended that exercises like these be regularly incorporated into operations as a means of nurturing an understanding of patient-centered care and the responsibility and opportunity for each member of the care team to embody those values.

Exercises to Understand the Patient Experience

  • Trace the path a patient takes from arrival at the office through to registration to the waiting room to the exam room and to check-out. What do they see? What barriers may then encounter? Is the signage they encounter informative? Does the environment (including the signage) convey warmth and compassion? Trace patients’ steps using a walker and/or a wheelchair. Ask yourselves the same questions. Better yet, do this exercise alongside patient representatives.
  • Pair up with a colleague. Share a brief personal story with your partner (2-3 minutes, does not need to be overly personal). Initially, tell the story with your partner sitting down and you standing up; then both sitting at the same level. Switch roles. Together, identify specific behaviors that created a sense of connection as you shared.
  • Role play a typical patient interaction in your exam rooms. Observe how the set-up of the room either facilitates eye contact and personal connection or inhibits it, specifically in consideration of how you use the EHR. Consider placement of the computer screen, availability and height of chairs, etc. Better yet, complete this exercise alongside patient representatives.
  • Sit in an exam room on the table for 10 minutes, just as a patient would (though they wouldn’t know in advance how long they would be waiting.) Take note of the environment of the exam room. Is there anything to keep you occupied? What can you hear going on outside the room? How does it feel to sit there?

Questions to ask your doctor about patient-centered care


Patient-Centered Primary Care Collaborative (PCPCC)

Questions to ask your doctor about patient-centered care

Sample questions:

  1. What type of information will you provide to me about my condition and treatment options?
  2. Will you provide me with decision aids that will help me to make the best individualized care decisions?
  3. Am I able to access a patient portal to help me manage my personal health information?
  4. Am I able to update and contribute to the information in the patient portal or just review it?
  5. Am I able to review the doctor’s notes in my record? Do I have the option of adding my own information and perspectives into my record for the doctor to read and review?
  6. When my care team meets to discuss my plan of care, will I be invited to participate in those discussions?
  7. Is there a way for me to securely send questions/messages to my doctor in advance of (or outside of) a scheduled appointment?

Improving Your Person and Family Engagement Metrics in TCPI | Patient-Centered Primary Care Collaborative

Source: Improving Your Person and Family Engagement Metrics in TCPI | Patient-Centered Primary Care Collaborative

The Patient Centered Primary Care Collaborative Support and Alignment Network (PCPCC SAN) was created to assist staff and leaders in Practice Transformation Networks, along with enrolled clinicians, to successfully transform their practices to deliver person and family centered care. In 2017 the TCPI is adopting 6 measures of person and family engagement (PFE).  On this page, we describe the measures and offer links to websites where you can download tools, information, and other educational materials.

“Bite Sized” Exercises and Discussion Prompts to Reinforce Culture

Questions to ask your doctor about patient-centered care

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