Physical and psychological health of family carers co-residing with an adult relative with an ID – Grey

Source: Physical and psychological health of family carers co-residing with an adult relative with an intellectual disability – Grey – 2017 – Journal of Applied Research in Intellectual Disabilities – Wiley Online Library



Providing long-term care to an adult relative with intellectual disability can impact negatively on caregivers’ health and well-being.


Data were collected via online and postal questionnaires on 110 family carers’ physical and psychological health, family stress and perceived positive gains from caring. Psychological adaptation and carers’ satisfaction with available support were also examined.


Study participants reported more health problems than general populations. Higher support needs of care recipients were associated with increased family stress. Carers being female were associated with lower family stress. Older age and better socio-economic position were associated with better psychological outcomes. Other associations were consistent with psychological adaption and perceived helpfulness of support buffering negative outcomes and facilitating positive gains from caring.


Family carers of adults with intellectual disability appear to experience poorer health outcome than population norms. Adaption to the caregiving role may buffer negative outcomes. Further large scale, population-based, longitudinal research is needed.


“I’m still here”: Exploring what matters to people with intellectual disability during advance care planning – McKenzie

Source: “I’m still here”: Exploring what matters to people with intellectual disability during advance care planning – McKenzie – 2017 – Journal of Applied Research in Intellectual Disabilities – Wiley Online Library



This study sought to identify, from the perspective of people with intellectual disabilities and life limiting conditions, the factors that strengthened and inhibited their Advance Care Planning.


This in depth qualitative study explored the experiences of four people with intellectual disability and life limiting conditions, through interviews and documentation reviews.


There was strong agreement across all participants about what positively influenced Advance Care Planning, namely; going at my pace; supporting me to make my own choices; adapting the process to suit me, and, most importantly; continuing to support and plan the life I’m still living. With the exception of being comfortable/skilled in end-of-life support, the skills required of facilitators were similar to those required for all forms of person-centred planning.


The findings are encouraging and demonstrate that Advance Care Planning is a useful tool in ensuring that people with intellectual disability have control and choice over their lives, right to the end.

The 30 Best Workplaces in Healthcare, According to Employees

The 30 Best Workplaces in Healthcare, According to Employees

Marcia Frellick

April 13, 2017

Great Place to Work, which partnered with Fortune magazine, has released its Best Workplaces in Health Care 2017 rankings after tallying employee-generated points.

Employees of qualifying companies – those that self-identified as being in the healthcare industry ― answered 58 questions about how often they experience the behaviors that make a workplace great, such as whether they feel physically safe, whether they are proud to work there, and whether employees care about each other.

The Top Five

Topping the list of 30 again this year was Texas Health Resources, headquartered in Arlington, with 18,815 employees. Of 1256 employees surveyed, 94% said their workplace was great. It was also ranked 31 this year in Fortune’s 100 Best Companies to Work For.

The company cited programs and policies that showcase what makes it unique. Among them are low medical premiums with low deductibles and 90% coinsurance and a 401k matching program in which, after 1 year, the company matches every dollar an employee contributes, up to certain limits. Also, Texas Health pays for tuition and some fees for approved degree plans that benefit the employee or the company.

Second was Encompass Home Health and Hospice, headquartered in Dallas, Texas, with 8232 US employees, of whom 843 were surveyed. It also had a workplace-is-great rating of 94%. It was ranked number 2 on the 2016 list as well.

Among the perks the company listed were that field employees can set their own daily schedules. Also, full-time employees can accrue 30 paid days off per year for personal needs, and that accrual starts on the first day of employment. Employees are also eligible to qualify for a company car, which they can take home and use for some personal needs.

Employees can be reimbursed if they pursue certain advanced certifications or degrees.

Ranked third was Baptist Health South Florida, headquartered in Coral Gables, with 15,073 employees, where 85% of 559 employees surveyed said their workplace was great.

The company offers large discounts on public transportation “which have saved employees upwards of $1,000/year,” the company says. Baptist Health also offers up to $10,000 to help employees who are adopting a child and offers a no-copay benefit to staff who use primary care physicians in the Baptist Health Quality Network or Baptist Health Medical Group.

Miami Children’s Health System in Florida came in fourth. The company has 3785 employees, and 88% of 832 employees surveyed said their workplace was great.

Employees at Miami Children’s can earn up to $1200 a year each when the organization hits its budget, patient satisfaction, and clinical index goals.

Employees who meet minimum body mass index requirements can take part in a free, 6-month weight management program with personal trainers, meal plans, and clinical supervision to help them meet their goals.

At number five was Methodist Le Bonheur Healthcare, headquartered in Memphis, Tennessee, with 11,203 US employees. Of 464 employees surveyed, 92% said their company was great.

The company allows employees to apply for tuition for continuing education ahead of time so that they can be reimbursed when they register ― a policy that reduces up-front out-of-pocket costs.

 It pays 75% of employees’ healthcare premiums and requires only 16 hours a week for part-timers to receive health insurance.
 It also offers mindfulness, fitness, and weight loss classes and diabetes management.

The Best of the Rest

Here, by rank, are the remaining 25 standouts:

6. St. Jude Children’s Research Hospital, Memphis, Tennessee

7. Horizon Pharma, plc, Lake Forest, Illinois

 8. Atlantic Health System, Morristown, New Jersey
 9. Scripps Health, San Diego, California
 10. Novo Nordisk Inc, Plainsboro, New Jersey
 11. Adeptus Health, Lewisville, Texas
 12. Roche Diagnostics, Indianapolis, Indiana
 13. BayCare Health System, Clearwater, Florida
 14. Yale-New Haven Hospital, New Haven, Connecticut
 15. Acorda Therapeutics, Ardsley, New York
 16. Baylor Scott & White Health, Dallas, Texas
 17. Cleveland Clinic, Ohio
 18. Great Lakes Caring, Jackson, Michigan
 19. Children’s Healthcare of Atlanta, Georgia
 20. American Heart Association, Dallas, Texas
 21. OhioHealth, Columbus
 22. Mayo Clinic, Rochester, Minnesota
 23. Kettering Health Network, Miamisburg, Ohio
 24. Professional Physical Therapy, Uniondale, New York
 25. Quantum Health, Columbus, Ohio

26. Astellas, Northbrook, Illinois

27. WESTMED Medical Group, Purchase, New York

28. Genentech, South San Francisco, California
 29. Benco Dental, Pittston, Pennsylvania
 30. Axcella Health, Cambridge, Massachusetts

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The Effects of Medicaid Expansion under the ACA: Updated Findings from a Literature Review | The Henry J. Kaiser Family Foundation

Coverage: Studies show that Medicaid expansion results in significant coverage gains and reductions in uninsured rates, both among the low-income population broadly and within specific vulnerable populations.

Access to care, utilization, affordability, and health outcomes: Most research demonstrates that Medicaid expansion positively impacts access to care, utilization of services, the affordability of care, and financial security among the low-income population. Studies have also shown improved self-reported health following expansion, but additional research is needed to determine effects on health outcomes.

Economic measures: Analyses find positive effects of expansion on multiple economic outcomes, despite Medicaid enrollment growth initially exceeding projections in many states. Studies also show that Medicaid expansions result in reductions in uncompensated care costs for hospitals and clinics as well as positive or neutral effects on employment and the labor market.

As the Trump Administration and Congress debate ACA repeal and replacement, gains in coverage and access as well as economic benefits to states and providers are at stake if the Medicaid expansion is repealed.

Source: The Effects of Medicaid Expansion under the ACA: Updated Findings from a Literature Review | The Henry J. Kaiser Family Foundation

Research on the effects of Medicaid expansions under the Affordable Care Act (ACA) can help increase understanding of how the ACA has impacted coverage; access to care, utilization, affordability, and health outcomes; and various economic outcomes, including state budgets, the payer mix for hospitals and clinics, and the employment and labor market. Understanding these findings can help inform the debate over a repeal of the ACA (which would include the Medicaid expansion).

This summary reviews findings from 108 studies of the impact of state Medicaid expansions under the ACA published between January 2014 (when the coverage provisions of the ACA went into effect) and January 2017. (This is an update to an earlier issue brief, “The Effects of Medicaid Expansion under the ACA: Findings from a Literature Review,” that covered studies published through May 2016.) It includes peer-reviewed studies as well as free-standing reports, government reports, and white papers published by research and policy organizations, using data from 2014 or later. This brief only includes studies that examine impacts of the Medicaid expansion; it excludes studies on impacts of ACA coverage expansions generally (not specific to Medicaid expansion alone) and studies investigating potential effects of expansion in states that have not (or had not, at the time of the study) expanded Medicaid. In both the brief below and the tables, findings are separated into three broad categories: Medicaid expansion’s impact on coverage; access to care, utilization, affordability, and health outcomes; and economic outcomes for the expansion states.

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Crip for a Day – New research shows role-playing disability promotes distress, discomfort and disinterest 

Source: New research shows role-playing disability promotes distress, discomfort and disinterest

Professionals in the fields of education and rehabilitation psychology have long used disability simulations to try to promote understanding and improve attitudes about persons with disabilities. To simulate blindness, for instance, participants might complete tasks while wearing blindfolds or goggles. Others use earplugs to mimic deafness. Others may navigate indoor and outdoor areas in a wheelchair. The idea is to boost empathy by giving people perspective on what it is like to have a disability.

However, a recent study published by Michelle Nario-Redmond, Ph.D., professor of psychology, reveals that disability simulations often result in feelings of fear, apprehension and pity toward those with disabilities, proving Nario-Redmond’s thesis that disability simulations do more harm than good.

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Guidelines: How to Write and Report About People with Disabilities

Guidelines: How to Write and Report About People with Disabilities (Download PDF)

Your Words, Our Image

Writers, editors, reporters and other communicators strive to use the most accurate terminology about people with disabilities. However, inaccurate, archaic and offensive expressions are still commonly used, perpetuating negative stereotypes and beliefs about people with disabilities.

For example, a person who uses a wheelchair – an objective fact – is often described as wheelchair-bound, a subjective description that implies victim hood.

As one wheelchair user puts it, “I personally am not ‘bound’ by my wheelchair. It is a very liberating device that allows me to work, play, maintain a household, connect with family and friends, and ‘have a life.’ ”

Who Says?

Since the first edition was published in 1984, we have consulted with hundreds of disability groups and individuals who have disabilities to produce Guidelines: How to Write and Report About People with Disabilities. The eighth edition presents the latest terminology preferred by people with disabilities.

The Associated Press Stylebook, the Publication Manual of the American Psychological Association (6th edition) and the American Association for the Advancement of Science have all adopted some of the recommendations from previous editions of the Guidelines.

The first edition of the Guidelines was produced with funding from the National Institute on Disability and Rehabilitation Research. Since then, more than one million copies have been distributed, and the electronic version is now used by people around the world.

Please use the Guidelines when you write or report about people with disabilities. We also offer a poster that presents a short list of disability writing style dos and don’ts.

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Rights in mind: Thinking differently about dementia and disability

Tom Shakespeare -University of East Anglia, UK, Hannah Zeilig – University of the Arts London, UK, & Peter Mittler – University of Manchester, UK

Download Rights in Mind (2017)


The aim of this paper is to argue for the utility of a relational model of disability, as a way of conceptualizing dementia. We explore whether dementia should be considered as a disability, and whether people with dementia might consider themselves as disabled people. We review examples of, and issues raised by, the political activism of people with dementia. We consider how language constructs dementia negatively. We discuss how the environment influences the experience of dementia. In conclusion, we show that a relational model of dementia lays the basis for a human rights approach to the condition, based on collaborative partnerships between people with dementia and people from other disability communities.

The Unique Challenges of Surveying U.S. Latinos | Pew Research Center

As the U.S. Hispanic population grows, reaching nearly 57 million in 2015 and making up 18% of the nation’s population, it is becoming increasingly important to represent Hispanics in surveys of the U.S. population and to understand their opinions and behavior. But surveying Hispanics is complicated for many reasons – language barriers, sampling issues and cultural differences – that are the subject of a growing field of inquiry. This report explores some the unique challenges currently facing survey researchers in reaching Hispanics and offers considerations on how to meet those challenges based on the research literature and our experiences in fielding the Pew Research Center’s National Survey of Latinos.

Source: The Unique Challenges of Surveying U.S. Latinos | Pew Research Center

By Anna Brown

Designing the Survey Questionnaire: Stress Confidentiality, Translate with Cultural Context in Mind

A respondent’s answer to a survey question, or even their decision to participate in the survey at all, is a product of social and cognitive context and may differ across racial and ethnic groups. In fact, studies have shown that Hispanics are more likely to refuse to participate in surveys, or having agreed to take a survey, more likely to refuse to answer individual questions under some circumstances. This disproportionate refusal rate may in part be driven by a general suspicion of government or a more specific fear of deportation among subgroups of the U.S. Hispanic population, including unauthorized immigrants. Introductory language at the start of the questionnaire that stresses the random selection of the respondent and confidentiality of responses can help to mitigate this risk, though experience suggests it will not mitigate it entirely.

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