Research Brief: Family Caregiver Support for People with IDD

The 2010 Family and Individual Needs for Disability Support Survey (FINDS) conducted by The Arc (2011) shows that family caregivers play a critical role in providing supports to individuals with intellectual and developmental disabilities (IDD).

Source: Research Brief: Family Caregiver Support for People with IDD | Family Support Research and Training Center

This databrief describes the kinds and amount of supports provided by families to individuals with IDD living in their family home. Caregivers provided an average of nine different kinds of support and more than half of all caregivers reported providing these supports more than 40 hours per week. More than half of caregivers in this survey reported being aged 50 or older, highlighting the critical need to start planning for a future when aging caregivers are no longer able to continue providing significant amounts of support for their family members.Click this link to download the data brief.

 

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

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

Abstract

Background

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.

Method

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.

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.

Conclusions

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.

Improving diabetes care for people with ID: a qualitative study exploring the perceptions and experiences of professionals in diabetes and ID services

Source: Brown – 2017 – Journal of Intellectual Disability Research – Wiley Online Library

Abstract

Background

Globally, diabetes is increasing with concerns about the impact on outcomes, including premature death and the costs associated with managing the condition. Research indicates that adults with intellectual disabilities (ID) are two to three times more likely to develop diabetes; however, there has been limited focus on diabetes service utilisation in this population. The aim of this study is to explore the perceptions and experiences of diabetes and ID practitioners.

Methods

A series of 1:1 semi-structured interviews were undertaken in one Scottish health service area. In total, 29 qualitative interviews were conducted: 10 with diabetes practitioners from primary and secondary care, 14 from ID services and 5 from community care services regarding diabetes service provision for this population. Thematic content analysis was undertaken to identify the themes and subthemes.

Results

Three main themes were identified: (1) enabling access to services to meet diabetes-related care needs of people with ID; (2) communication and service improvements between staff, patients and across services; and (3) providing person-centred diabetes care and developing adapted resources to increase patient self-care.

Conclusions

The findings of this study have important international implications in how diabetes practitioners plan and deliver services for people with ID and other vulnerable groups with limited cognitive ability and communication skills and difficulties in self-management. The findings highlight that access to diabetes education and adapted resources is needed, and if ‘reasonable adjustments’ are made to service provision and practice, people with ID can benefit from improved healthcare. Developing joint clinics to share knowledge and resources between diabetes and ID practitioners may improve service delivery and continuity of care, and thereby diminish the costs of not providing quality care.

Primary health care for people with an ID: an exploration of consultations, problems identified, and their management in Australia

Source: Primary health care for people with an intellectual disability: an exploration of consultations, problems identified, and their management in Australia

Abstract

Background

People with an intellectual disability (ID) have more complex and different patterns of health care needs than the general population. They experience a greater burden of multi-morbidity, high levels of undetected and unmanaged health issues, and premature mortality than the general population. Primary care has a key role in the health care of people with an ID. Currently, very little is known about the consultation type and length, problems managed, and how general practitioners (GPs) manage these problems for people with an ID compared with the general population. This information would provide valuable insights into how GPs are achieving the health guidelines and facilitating people with an ID to achieve the highest attainable standard of health.

Methods

A secondary analysis of data was collected from January 2003 to December 2012 from the Bettering the Evaluation and Care of Health (BEACH) programme. Consultation type, consultation length in minutes, problem(s) managed during the consultation, medications, treatments provided, and referrals made, pre and post age–sex standardisation, at all GP encounters with people identified in the encounter record as having an ID (‘ID’ encounters, n = 690) were compared with those at ‘non-ID’ encounters (n = 970 641). Statistical significance was tested with 95% confidence intervals.

Results

This study identified significant differences in consultation types, consultation length, problem(s) managed during the consultation, medications, treatments provided, and referrals made at ‘ID’ encounters compared with ‘non-ID’ encounters. ‘ID’ encounters had more indirect encounters, longer consultations, more problems managed, but an under management of common health conditions in people with an ID. Administrative rather than medically related actions dominated clinical treatments for people at ‘ID’ encounters, and they received fewer procedural treatments, referrals to specialists, and medications compared with those at ‘non-ID’ encounters.

Conclusion

The significant differences in consultations, problems identified and managed suggest that GPs may require additional support to (1) identify and manage common medical conditions experienced by people with an ID; (2) manage the increased time required for consultations; and (3) directly consult with people with an ID. Further research is required to determine why GPs managed problems in a significantly different way for people with an ID.

 

Robert Wood Johnson Foundation Program to Increase Diversity Across Its Programming

Robert Wood Johnson Foundation
Program to Increase Diversity Across Its Programming
Deadline: May 16, 2017
Award Ceiling: $50,000
http://rwjf.ws/2ojDzXq
The Robert Wood Johnson Foundation has issued a Request for Proposals for an annual initiative to increase diversity across its research network and programming.

Now in its eleventh year, New Connections: Increasing Diversity of RWJF Programming, a career development program for early-career researchers, is designed to expand the diversity of perspectives that inform RWJF programming and introduce new researchers to the foundation to help address research and evaluation needs. Through grantmaking, mentorship, career development and networking, New Connections enhances the research capacity of its grantees and network members. The researchers in the program transcend disciplines (health, health care, social sciences, business, urban planning, architecture and engineering); work to build the case for a Culture of Health with strong qualitative and quantitative research skills; and produce and translate timely research results.

Healthy Communities: What you can do

Source: What you can do

A new survey shows 94 percent of Americans are willing to take positive action to make their community a healthier place, according to research conducted by the Aetna Foundation.

hands joined in circle and two people smiling

You can play a role in creating more healthy days where you live! Don’t wait! Start the Healthiest Cities & Counties conversation in your area today:

  • POTENTIAL PARTICIPANTS: Is your community making a collaborative effort to become a healthier city or county? Join the Challenge and tell us how your city or county is creating more healthy days where you live.
  • COMMUNITY MEMBERS: Real change starts at the grassroots level, and a healthier city or county starts with you! Share information with your friends, family, peers and elected officials. Send a link to the local elected official, academic institution, business or organization in your area that has shown interest in improving the health of your community.

Share this image and link to the Healthiest Cities & Counties Challenge website:

Create More Healthy Days and Join Healthiest Cities & Counties Challenge

Check out our Frequently Asked Questions to learn more.

Healthiest Cities & Counties: The Challenge

Source: Welcome to the Challenge

We believe a healthy city/county is economically competitive, inclusive and equitable. That’s why we’ve called on cities and counties across the country to join the Healthiest Cities & Counties Challenge. The Challenge is a partnership between the Aetna Foundation, the American Public Health Association and the National Association of Counties and administered by CEOs For Cities. The partnership empowers small to mid-size U.S. cities and counties to create a positive health impact.

WHAT’S NEW?

Durham and Carrabus counties in North Carolina highlight their successful event on health policy and innovation, and Gulfport, Mississippi showcases pictures of a community garden designed by elementary school students. Catch up on Wyandotte County, Kansas‘ new video that highlights their “Safe Routes to Parks” approach. And Mecklenburg County, North Carolina’s new video shows how their Village HeartBEAT program will expand thanks to the Challenge.

Check out our map page to learn more about how our HealthyCommunity50 are improving health in the areas of healthy behaviors, community safety, built environment, social/economic factors and environmental exposures.

We’re awarding more than $1.5 million in prizes to cities, counties and federally recognized tribes most able to show measurable changes in health and wellness over the next several years.

Questions about the Challenge? Email hccc@ceosforcities.org or call Healthiest Cities & Counties Challenge Director Debbie Nadzam at 216-523-7348.

Who Gains Under Expanded Health Savings Accounts? – The Commonwealth Fund

The U.S. House of Representatives leadership’s bill to repeal and replace the Affordable Care Act (ACA) would have significantly expanded the use of health savings accounts (HSAs), which people can use to save tax-free money to pay for certain medical expenses. This effort isn’t new and it’s not likely to go away just because a vote on the House bill, the American Health Care Act (AHCA), has been tabled. Amendments to the tax code to encourage HSAs have been a staple of Republican health care proposals, and the HSA provisions in the House legislation were introduced as a standalone bill last year.

Source: Who Gains Under Expanded Health Savings Accounts? – The Commonwealth Fund

The U.S. House of Representatives leadership’s bill to repeal and replace the Affordable Care Act (ACA) would have significantly expanded the use of health savings accounts (HSAs), which people can use to save tax-free money to pay for certain medical expenses. This effort isn’t new and it’s not likely to go away just because a vote on the House bill, the American Health Care Act (AHCA), has been tabled. Amendments to the tax code to encourage HSAs have been a staple of Republican health care proposals, and the HSA provisions in the House legislation were introduced as a standalone bill last year.

Why all the interest? HSA proponents suggest the accounts offer cost savings and give consumers freedom to spend their money how they see fit. An HSA must be paired with a high-deductible health plan (HDHP), and there is evidence that the combination of an HDHP and HSA does reduce health care spending—by leading consumers to skip care, both needed and unneeded. Yet there is little basis to conclude that HSAs expand access to care, or that the tax benefits these accounts promise reach most Americans. In practice, most financial advantages have accrued to the top 5 percent of earners, who can afford to contribute to the accounts during the year and reap larger gains at tax time.

HSAs: The Basics

HSAs were created in 2003 in legislation establishing a Medicare prescription drug benefit. They are tax-preferred savings accounts funded by consumers and sometimes their employers. Consumers can contribute to an HSA only if they are enrolled in an HDHP, which in 2017 is an individual or group health plan that has a deductible of at least $1,300 ($2,600 for a family plan). Unlike other savings vehicles established under federal law, HSAs provide what amounts to triple tax benefits: contributions are tax-deductible; account funds are invested and grow tax-free; and withdrawals are tax-exempt (if they are used for qualified medical expenses).

HSAs are far more attractive to higher-income individuals, who are more likely to have sufficient income to fund the accounts and gain a greater tax benefit than are lower-income individuals subject to lower tax rates. In 2013, tax filers with income above $200,000 were 10 times more likely to claim a tax deduction for HSA contributions than those with incomes below $50,000, and the tax-advantaged contributions these high earners made were, on average, more than twice as large. A study of HSA take-up in the group market from 2005 to 2012 found similar results and observed, perhaps unsurprisingly, that high-income households were substantially more likely to fund their HSAs fully (with their own dollars and contributions from employers) than were middle- and lower-income filers.

Enhanced HSAs on the Horizon?

The AHCA would have expanded use of HSAs by authorizing higher tax-free contributions (increasing the amount from $3,400 to $6,550 for an individual plan) and more tax-free uses for funds. The AHCA also would have cut in half the penalty for withdrawals for nonmedical expenses.

Other proposals would provide similar and sometimes greater benefits to account holders. Legislation previously authored by Health and Human Services Secretary Tom Price would increase HSA contribution limits while also making it easier to shelter those funds and other retirement savings from taxes when they are transferred to heirs. Senator Rand Paul’s (R–Ky.) ACA replacement bill would go still further, erasing the requirement that HSAs be linked to a high-deductible plan and eliminating contribution limits altogether.

There is little doubt these expansions would encourage HSA take-up. Likewise, the proposals would make HSAs even more attractive as savings and estate planning vehicles for high-income households—particularly those who earn too much to contribute to other tax-advantaged retirement accounts and those who have maxed out such contributions. At the same time, the financial services companies that manage these accounts would reap substantial benefits, too.

Looking Ahead

HSAs are already growing under current law: by 2017, nearly 21 million accounts held more than $41 billion in assets, while the cost of the program to taxpayers has steadily increased and will nearly double by 2020. The AHCA would have dramatically accelerated this trend, causing federal spending to shoot up nearly 50 percent over the first three years following enactment and by a total of more than $19 billion by 2026.

The Congressional Budget Office estimated that the AHCA would have reduced insurance coverage dramatically, especially among Americans with low incomes. Moreover, the people most likely to need assistance paying for coverage and out-of-pocket costs—those with incomes under 200 percent of poverty, or around $24,000 for a single person—are the least likely to benefit from the bill’s approach to making coverage more affordable: HSAs. Given an ACA replacement’s potential impact on federal spending and coverage, spending billions of dollars on a program that primarily helps those least likely to need assistance purchasing coverage and paying out-of-pocket costs warrants scrutiny.

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

Synopsis

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.

There’s a Disability Rights Treaty. The United States Still Hasn’t Ratified it.

It opened for signature a decade ago. It’s time for the U.S. Senate to act.

Source: There’s a Disability Rights Treaty. The United States Still Hasn’t Ratified it.

On a Friday afternoon in July 2009, President Obama gave remarks in the East Room of the White House about the signing of an international human rights treaty to protect the rights of people with disabilities.

“Disability rights aren’t just civil rights to be enforced here at home; they’re universal rights to be recognized and promoted around the world,” Obama said. “And that’s why I’m proud to announce that next week, the United States of America will join 140 other nations in signing the United Nations Convention on the Rights of Persons with Disabilities, the first new human rights convention of the 21st century.”

The treaty, known as CRPD, was inspired by U.S. leadership on disability rights and is modeled after the Americans with Disabilities Act (ADA) of 1990, which protects individuals with disabilities against discrimination in areas such as employment, public accommodations, and transportation.

“This extraordinary treaty calls on all nations to guarantee rights like those afforded under the ADA. It urges equal protection and equal benefits before the law for all citizens; reaffirms the inherent dignity and worth and independence of all persons with disabilities worldwide,” Obama said.

CRPD opened for signature 10 years ago today — and as the committee that monitors CRPD implementation meets in Geneva right now to consider reports from eight countries, it’s a good reminder that the United States isn’t one of them. Despite Obama’s signature nearly eight years ago, the treaty — ratified by 172 countries — still awaits U.S. Senate ratification.

In December 2012, a Senate vote (61–38) fell five votes short of the two-thirds majority required to adopt an international treaty. In July 2014, the Senate Foreign Relations Committee advanced the treaty (12–6) — but the full Senate never took a vote.

At a time when the United States has a president who mocked (while campaigning) a reporter with a disability, when the U.S. Secretary of Education is a threat to children with disabilities, and when the current U.S. Supreme Court nominee has repeatedly ruled against students with disabilities and who’s demonstrated a troubling approach to the rights of people with disabilities, it’s easy to feel discouraged about the state (and future) of disability rights.

But ratifying CRPD represents an opportunity to take bipartisan action and stand with the rest of the world in advancing the civil and human rights of people with disabilities everywhere. And it’s an opportunity to continue our nation’s tradition of advancing important human rights protections, as we did with the Rehabilitation Act, the Individuals with Disabilities Education Act, the ADA, and the ADA Amendments Act of 2008 — all signed by Republican presidents.

Disability rights are civil and human rights. Now, a decade after the treaty opened for signature, it’s time to finally make a global commitment to protecting disability rights by ratifying it.