Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario

Download: Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario

Source: ICES

Lunsky Y, Klein-Geltink JE, Yates EA, editors. December 2013

The Issue

Ontario’s Action Plan for Health Care focuses on becoming healthier, with improved access to integrated family/primary care and a major emphasis on the provision of the right care at the right time and in the right place. These priorities are particularly relevant to individuals with developmental disabilities: research from other jurisdictions would suggest that they have higher rates of preventable diseases, greater challenges obtaining guideline-recommended primary care3 and higher associated health care costs.4 However, the health status and

health care of adults with developmental disabilities have not been well studied in Ontario, due to the absence of population-based data. The work of the Health Care Access Research and Developmental Disabilities (H-CARDD) Program is in direct response to Ontario’s call to action through addressing this data gap. The first H-CARDD project, conducted in partnership with decision makers and clinicians from the health and social services sectors, has focused on primary care.

The Study

The Atlas on the Primary Care of Adults with Developmental Disabilities in Ontario provides, for the first time in Canada, descriptive information on the health of adults with developmental disabilities in Ontario and examines the quality of their primary care relative to adults without developmental disabilities. Findings have relevance in Ontario and in other jurisdictions where there is interest in improving health care and the health status of those with developmental disabilities.

Revised ACA Repeal and Replace Bill Likely to Increase the Uninsured Rate and Health Insurance Costs for Many

House Republicans are close to agreeing on an amended version of the American Health Care Act, their proposed repeal and replacement of the Affordable Care Act. David Blumenthal, M.D., and Sara Collins say that, based on the summaries circulated by the media, the revised bill will significantly increase the numbers of uninsured Americans while raising insurance costs for many of the nation’s most vulnerable citizens. At the same time, the bill’s restructuring of the Medicaid program is likely to hurt state economies and enrollees.

Source: Revised ACA Repeal and Replace Bill Likely to Increase the Uninsured Rate and Health Insurance Costs for Many – The Commonwealth Fund

News outlets report that House Republicans are close to agreeing on an amended version of the American Health Care Act (AHCA), their proposed repeal and replacement of the Affordable Care Act (ACA). The all-important legislative language for the revised bill is not yet available, nor are Congressional Budget Office (CBO) projections of its effects on coverage and the budget, so any analyses are necessarily tentative.

Nevertheless, the summaries leaked to the media offer insight on the amended bill. If accurate, those summaries suggest that the revised AHCA will significantly increase the numbers of uninsured Americans, raise the cost of insurance for many of the nation’s most vulnerable citizens, and, as originally proposed in the AHCA, cut and reconfigure the Medicaid program. The new amendment specifically allows states to weaken consumer protections by, for example, permitting insurers to charge people with preexisting conditions higher premiums.

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CompareMaine shows the average cost of common healthcare procedures at different facilities in Maine. You can also see patient experience ratings and how Maine hospitals compare on patient safety.

Source: CompareMaine

more information. better decisions.

Compare Costs of Healthcare Procedures and Quality of Care Across Maine

The Maine Health Data Organization, in collaboration with the Maine Quality Forum, is required by law to promote the transparency of healthcare cost and quality information via a publicly accessible website. The cost and quality of healthcare procedures can vary widely among providers. You have a choice in where you receive care. CompareMaine shows the average cost of common healthcare procedures at different facilities in Maine. You can also see patient experience ratings and how Maine hospitals compare on patient safety.

The cost estimates on CompareMaine are median payments. They are meant to serve as a reference point for comparison. In order to find out your actual payment, please contact your insurance company. If you do not have insurance, please contact the facility that you are interested in. When contacted directly, facilities often report their charges which may be higher than the actual payments they receive from insurance companies and patients.

Mainstream health professionals’ stigmatising attitudes towards people with ID: a systematic review

Source: Pelleboer-Gunnink – 2017 – Journal of Intellectual Disability Research – Wiley Online Library



Equal access to mainstream healthcare services for people with intellectual disabilities (ID) still requires attention. Although recent studies suggest that health professionals hold positive attitudes towards people with ID, stigmatising attitudes may influence their efforts to serve people with ID in community healthcare practice. To stimulate inclusion in mainstream healthcare services, this systematic review focussed on barriers in attitudes of mainstream health professionals towards people with ID.


Five electronic databases were systematically searched and references in full text articles were checked for studies published in the English language between January 1994 and January 2016. A social–psychological triad of cognitive, affective and behavioural dimensions of stigmatising attitudes is used to structure and discuss the results.


The literature search generated 2190 records with 30 studies that passed our exclusion criteria. Studies were mostly cross-sectional and of moderate quality. With respect to stigma, a lack of familiarity with and knowledge about people with ID was found. ID was considered as a stable condition not under personal control. Moreover, mainstream health professionals had either low or high expectations of the capabilities of people with ID. Professionals reported stress, lack of confidence, fear and anxiety, a tendency to treat people with ID differently and a lack of supporting autonomy.


Stigmatising attitudes towards people with ID appeared to be present among mainstream health professionals. This might affect the ongoing challenges regarding inclusion in mainstream healthcare services. To facilitate inclusion in mainstream healthcare services, it is recommended to include contact and collaboration with experts-by-experience in education programs of health professionals. Future research should progress beyond descriptive accounts of stigma towards exploring relationships between cognitive, affective and behavioural dimensions as pointers for intervention. Finally, inclusion would benefit from an understanding of ‘equal’ treatment that means reasonable adjustments instead of undifferentiated treatment.

High Physician Turnover May Partly Explain ACOs’ Limited Success

Substantial Physician Turnover and Beneficiary “Churn” in a Large Medicare Pioneer ACO

Source: Physician Turnover Beneficiary Churn Medicare ACO – The Commonwealth Fund


A study of one of the nation’s largest Medicare accountable care organizations (ACOs) found that participating physicians see a relatively small number of patients who are actually part of the ACO population: less than 5 percent of a typical patient panel consists of ACO patients. The ACO also experiences substantial physician turnover. And when physicians leave the ACO, most of their attributed beneficiaries leave as well.

The Issue

“Physicians play a central role in the delivery of medical care and, not surprisingly, also are critical players in Medicare payment reform.”

To increase provider accountability for the cost and quality of patient care, health care systems, including the Medicare and Medicaid programs, have begun to move away from fee-for-service and toward ACOs and other alternative payment models that encourage more efficient and effective care delivery. With the ongoing implementation of the Medicare Access and CHIP Reauthorization Act of 2015, the numbers of physicians and provider organizations entering alternative payment models such as ACOs is likely to accelerate rapidly. Evidence to date, however, indicates that ACOs have achieved limited success in attaining their goals. Even though physicians play a decisive role in whether ACOs are able to deliver on their promise, there has been limited research on the physicians who work in ACOs and their experiences with patients. Commonwealth Fund–supported researchers studied a large Medicare Pioneer ACO to learn about the stability of physician participation and beneficiary enrollment.

Key Findings

  • The ACO experienced substantial turnover among physicians: only 52 percent were affiliated over the entire three-year contract period.
  • Most (88%) physicians had at least some beneficiaries attributed to them, but these patients accounted for just a small part of their panels, which averaged 1,700 patients per panel. Half (50%) of physicians had just 70 or fewer attributed beneficiaries. ACO enrollees accounted for less than 5 percent of the median physician’s patient panel.
  • About half (49%) of beneficiaries who joined the ACO in contract year 2 or 3 did so because their physician had joined the ACO. When physicians left the ACO in year 2 or 3, 90 percent of their assigned beneficiaries also left.

The Big Picture

The study’s findings suggest that two factors can dampen an ACO’s potential to hit its financial targets: a relatively low number of enrollees attributed to participating physicians, and the loss of patients when physicians leave the ACO. To the extent that there is patient turnover, the ACO’s incentives also are dampened with respect to investments that require more than a few months to achieve any payoff. The authors conclude that the financial incentives provided by ACOs to provide better, more efficient care may not be sufficient to attract physicians, given the small numbers of ACO beneficiaries they tend to serve. Physicians, they say, might instead repond better to comparable incentives that are linked to having a larger number of patients on their panels. This, however, would require standardizing incentives across payers. Standardization also reduces the potential cacophony associated with having a large number of incentives. Health systems also could reconsider how they link beneficiaries to primary care physicians to concentrate care among a smaller number of physicians, creating a critical mass of patients that might encourage and facilitate practice pattern changes.

The authors also note that having the ability to select participating physicians each year creates a temptation for ACOs to improve their risk profile—and thereby increase their opportunity for shared savings—by dropping the small number of physicians whose patients have the most unfavorable risk mix (e.g., those with very high treatment costs). The Centers for Medicare and Medicaid Services could put policies in place that would reduce the incentive to game the risk pool.

About the Study

The researchers used the following data sources for their analysis: a list of beneficiaries aligned to Partners HealthCare’s ACO; a list of physicians affiliated with the ACO during that period; databases that captured the number of years a physician was affiliated with the ACO, physician specialty, and other factors; and Medicare claims data.

The Bottom Line

A low number of attributed enrollees per physician and substantial physician turnover may help explain the muted impact that accountable care organizations have had thus far.

Improving hospital care of patients with intellectual and developmental disabilities – Disability and Health Journal

People with intellectual disabilities and developmental disabilities (IDD) face poorer care and outcomes when hospitalized than patients without IDD. A panel discussion “Hospital care for individuals with IDD: The Issues and Challenges” was held at the Annual Conference of the American Academy of Developmental Medicine and Dentistry, held in Chicago July 8–10, 2016. Among the panelists were representatives from Rush University Medical Center in Chicago, IL and Saint Barnabas Medical Center in Livingston, NJ who discussed efforts to improve hospital care of patients with IDD at their institutions.

Source: Improving hospital care of patients with intellectual and developmental disabilities – Disability and Health Journal

Sarah H. Ailey, PhD RN, Paula J. Brown, MBA, Caitlin M. Ridge, BA, CCLS

Preparing for Life After High School: Characteristics and Experiences of Youth in Special Education

Findings from the National Longitudinal Transition Study 2012. Volume 1: Comparisons with Other Youth (Full Report)

Key Findings: Youth with an IEP are more likely than their peers to be socioeconomically disadvantaged and to face problems with health, communication, and completing typical tasks independently. The vast majority of youth with and without an IEP feel positive about school, but those with an IEP experience bullying and are suspended at higher rates, and are less engaged in school and social activities. Youth with an IEP are more likely than youth without an IEP to struggle academically, yet less likely to

Source: Preparing for Life After High School: The Characteristics and Experiences of Youth in Special Education. Findings from the National Longitudinal Transition Study 2012. Volume 1: Comparisons with Other Youth (Full Report)

Policymakers and educators have long recognized the importance of addressing the needs of youth in special education, who today account for 12 percent of all youth in the United States. Concern that this objective was not being adequately met led Congress to pass landmark legislation in 1975, now known as the Individuals with Disabilities Education Act (IDEA) (U.S. Department of Education, 2010). IDEA mandates that children and youth with disabilities have access to a free appropriate public education.

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New 2017 Transition Coding and Reimbursement Tip Sheet Available

Got Transition and the American Academy of Pediatrics released a new 2017 Transition Coding and Reimbursement Tipsheet 2017 to support the delivery of recommended transition services in pediatric and adult primary and specialty care settings. The new tip sheet includes a list of updated transition-related CPT codes, including the new code for transition readiness assessment, and current Medicare fees and RVUs for these services.  It also includes a new set of seven clinical vignettes with recommended CPT and ICD-10 codes. HERE for the tip sheet.

Developing Culturally Responsive Approaches to Serving Diverse Populations: A Resource Guide for Community-Based Organizations

Michael López, Kerry Hofer, Erin Bumgarner, and Djaniele Taylor


A changing population According to 2013 U.S. Census data: • 48 percent of children under the age of 18 were members of racial/ethnic groups other than nonHispanic white. • Of this group, Hispanics represented the largest racial/ethnic group (24 percent), followed by nonHispanic blacks (14 percent) and non-Hispanic Asians (5 percent). • Hispanics also are a fast-growing racial/ethnic group, almost tripling as a share of the U.S. population between 1980 (9 percent) and 2013 (24 percent). a Across that culturally and linguistically diverse population, however, there is great variability within any given racial/ethnic group. Understanding the variability within and across racial/ethnic subgroups is an important step any organization must take to ensure its services are culturally responsive to the needs of its targeted population.

Breaking the Stigma — A Physician’s Perspective on Self-Care and Recovery

Adam B. Hill, M.D.

N Engl J Med 2017; 376:1103-1105

March 23, 2017 DOI: 10.1056/NEJMp1615974

My name is Adam. I am a human being, a husband, a father, a pediatric palliative care physician, and an associate residency director. I have a history of depression and suicidal ideation and am a recovering alcoholic. Several years ago, I found myself sitting in a state park 45 minutes from my home, on a beautiful fall night under a canopy of ash trees, with a plan to never come home. For several months, I had been feeling abused, overworked, neglected, and under-appreciated. I felt I had lost my identity. I had slipped into a deep depression and relied on going home at night and having a handful of drinks just to fall asleep. Yet mine is a story of recovery: I am a survivor of an ongoing national epidemic of neglect of physicians’ mental health.


Interview with Dr. Stuart Slavin on depression and suicide among physicians and trainees and how to address stigma associated with mental illness.

Interview with Dr. Stuart Slavin on depression and suicide among physicians and trainees and how to address stigma associated with mental illness. (6:24)

In the past year, two of my colleagues have died from suicide after struggling with mental health conditions. On my own recovery journey, I have often felt branded, tarnished, and broken in a system that still embroiders a scarlet letter on the chest of anyone with a mental health condition. A system of hoops and barriers detours suffering people away from the help they desperately need — costing some of them their lives.

Last year, I decided I could no longer sit by and watch friends and colleagues suffer in silence. I wanted to let my suffering colleagues know they are not alone. I delivered a grand-rounds lecture to 200 people at my hospital, telling my own story of addiction, depression, and recovery. The audience was quiet, respectful, and compassionate and gave me a standing ovation. Afterward, hundreds of e-mails poured in from people sharing their own stories, struggles, and triumphs. A floodgate of human connection opened up. I had been living in fear, ashamed of my own mental health history. When I embraced my own vulnerability, I found that many others also want to be heard — enough of us to start a cultural revolution.

My years of recovery taught me several important lessons. The first is about self-care and creating a plan to enable us to cope with our rigorous and stressful work. Personally, I use counseling, meditation and mindfulness activities, exercise, deep breathing, support groups, and hot showers. I’ve worked hard to develop self-awareness — to know and acknowledge my own emotions and triggers — and I’ve set my own boundaries in both medicine and my personal life. I rearranged the hierarchy of my needs to reflect the fact that I’m a human being, a husband, a father, and then a physician. I learned that I must take care of myself before I can care for anyone else.

The second lesson is about stereotyping. Alcoholics are stereotyped as deadbeats or bums, but being humbled in your own life changes the way you treat other people. An alcoholic isn’t a bum under a bridge or an abusive spouse: I am the face of alcoholism. I have been in recovery meetings with people of every color, race, and creed, from homeless people to executives. Mental health and substance-abuse conditions have no prejudice, and recovery shouldn’t either. When you live with such a condition, you’re made to feel afraid, ashamed, different, and guilty. Those feelings remove us further from human connection and empathy. I’ve learned to be intolerant of stereotypes, to recognize that every person has a unique story. When we are privileged as professionals to hear another person’s story, we shouldn’t take it for granted.

The third lesson is about stigma. It’s ironic that mental health conditions are so stigmatized in the medical profession, given that physicians long fought to categorize them as medical diagnoses. Why do medical institutions tolerate the fact that more than half their personnel have signs or symptoms of burnout? When mental health conditions come too close to us, we tend to look away — or to look with pity, exclusion, or shame.

We may brand physicians who’ve had mental health conditions, while fostering environments that impede their ability to become and remain well. When, recently, I moved to a new state and disclosed my history of mental health treatment, the licensing board asked me to write a public letter discussing my treatment — an archaic practice of public shaming. Indeed, we are to be ashamed not only of the condition, but of seeking treatment for it, which our culture views as a sign of weakness. This attitude is pervasive and detrimental — it is killing our friends and colleagues. I’ve never heard a colleague say, “Dr. X wasn’t tough enough to fight off her cancer,” yet recently when a medical student died from suicide, I overheard someone say, “We were all worried she wasn’t strong enough to be a doctor.” We are all responsible for this shaming, and it’s up to us to stop it.

The fourth lesson is about vulnerability. Seeing other people’s Facebook-perfect lives, we react by hiding away our truest selves. We forget that setbacks can breed creativity, innovation, discovery, and resilience and that vulnerability opens us up to personal growth. Being honest with myself about my own vulnerability has helped me develop self-compassion and understanding. And revealing my vulnerability to trusted colleagues, friends, and family members has unlocked their compassion, understanding, and human connection.

Many physicians fear that showing vulnerability will lead to professional repercussions, judgment, or reduced opportunities. My experience has been that the benefits of living authentically far outweigh the risks. When I introduced myself in an interview for a promotion by saying, “My name is Adam, I’m a recovering alcoholic with a history of depression, and let me tell you why that makes me an exceptional candidate,” I got the job. My openly discussing recovery also revealed the true identity of others. I quickly discovered the supportive people in my life. I can now seek work opportunities only in environments that support my personal and professional growth.

The fifth lesson is about professionalism and patient safety. We work in a profession in which lives are at risk, and patient safety is critically important. But if we assume that the incidence of mental health conditions, substance abuse, and suicidal ideation among physicians is similar to (or actually higher than) that in the general population, there are, nevertheless, many of us out there working successfully. The professionals who pose a risk to patient safety are those with active, untreated medical conditions who don’t seek help out of fear and shame. Physicians who are successfully engaged in a treatment program are actually the safest, thanks to their own self-care plans and support and accountability programs.

Instead of stigmatizing physicians who have sought treatment, we need to break down the barriers we’ve erected between our colleagues who are standing on the edge of the cliff and treatment and recovery. Empathy, unity, and understanding can help us shift the cultural framework toward acceptance and support. Mentally healthy physicians are safe, productive, effective physicians.

The last lesson is about building a support network. My network has been the bedrock of my recovery. You can start small and gradually add trusted people, from your spouse and family to friends, counselors, support groups, and eventually colleagues. Then when you fall flat on your face, there will be someone to pick you up, dust you off, and say, “Get back out there and try it again.” A support network can also hold you accountable, ensuring that you remain true to your own personal and professional standards.

Without question, my own successful recovery journey has made me a better physician. My newfound perspective, passion, and perseverance have opened up levels of compassion and empathy that were not previously possible. I still wear a scarlet A on my chest, but it doesn’t stand for “alcoholic,” “addict,” or “ashamed” — it stands for Adam. I wear it proudly and unapologetically.

When a colleague dies from suicide, we become angry, we mourn, we search for understanding and try to process the death . . . and then we go on doing things the same way we always have, somehow expecting different results — one definition of insanity. It’s way past time for a change.

Disclosure forms provided by the author are available at


From the Indiana University School of Medicine and the Riley Hospital for Children, Indianapolis.