Draft Principles for a Person-Centered Approach to Serious or Advanced Illness

Deadline: May 12, 2017

ACL, in consultation with stakeholders from the aging and disability communities, has drafted a set of principles to guide their work, and to enhance existing programs and services related to serious or advanced illness for older adults and people with disabilities. ACL is now seeking input from the people they serve-older adults, people with dementia, people with all types of disabilities, and families and caregivers, as well as partners in the aging and disability networks.  The Draft Principles for a Person-Centered Approach to Serious or Advanced Illness is available here. Send your comments, by May 12, 2017, to AdvancedIllness@acl.hhs.gov.

Women’s Refugee Commission – Disabilities

Source: Women’s Refugee Commission – Disabilities

As many as 7.7 million of the world’s 51 million people displaced by conflict have disabilities. People with disabilities are among the most hidden and neglected of all displaced people, excluded from or unable to access most aid programs because of physical and social barriers or because of negative attitudes and biases. They are often not identified when aid agencies and organizations collect data and assess needs during and after a humanitarian disaster. They are more likely to be forgotten when health and support services are provided. Often, refugees with disabilities are more isolated following their displacement than when they were in their home communities.

Key Reports & Resources

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Women’s Refugee Commission – Maternal & Newborn Health and Disability

Source: Women’s Refugee Commission – Maternal & Newborn Health

Worldwide, more than 350,000 women die every year from complications related to pregnancy and childbirth—that’s nearly one every minute. For women affected by conflict or disaster, who are displaced from their homes and communities, the risk of maternal death or injury is especially high. In fact, over 60 percent of the world’s maternal deaths occur in 10 countries, nine of which are currently experiencing or emerging from conflict. With the breakdown of traditional social structures during times of war or conflict, women face an increased threat of sexual abuse, exploitation and violence. And sexual violence puts them at high risk of unwanted pregnancies and unsafe abortions, especially since they often lack access to emergency contraception and emergency care for pregnancy and childbirth complications.

Access to quality health services can mean the difference between life and death. In crisis settings, this access is particularly limited, increasing the risk of maternal death, the main causes of which are: hemorrhage, unsafe abortions, high blood pressure or prolonged and obstructed labor without access to cesarean section. The lack of access to health care also raises the risk of newborn death, usually caused by preterm birth, infection or asphyxia (lack of oxygen) during childbirth. However, there are several steps that can be taken to prevent maternal and newborn death. Training attendants to assist mothers during childbirth and making cesarean section readily available can prevent mothers and their infants from dying needlessly.

Parental Rights Toolkit

  1. ICE-Directive-Parents-Guide-ICE-Version-2014-EN
  2. ICE-Directive-Parents-Guide-ICE-Version-2014-ES
  3. ICE-s-Parental-Interests-Directive
  4. Parental Rights Report Spanish
  5. Parental Rights Report-Final
  6. Parental Rights-Make-A-Plan-June-2014-Spanish
  7. Parental-Rights-Toolkit-ENGLISH_web
  8. Parental-Rights-Toolkit-ENGLISH-Interactive
  9. Parental-Toolkit-SPANISH_Interactive
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Disability Rights Consortium At Equip For Equality – Immigration And Disability

Host: Equip for Equality


Wednesday, March 22, 2017 –

9:30am to 11:00am


Equip for Equality
20 North Michigan Avenue, Suite 300
Chicago, IL60602


Lisa Palumbo and Audra Passinault from LAF will be our featured speakers to discuss the intersection between immigration and disability. Specifically, they will address the recent Executive Orders and Implementation Memoranda of the current administration and how these policies may affect persons with disabilities. Given the heightened focus on immigration issues recently, this should be a very timely and useful presentation. The meeting will be at Equip for Equality (20 N. Michigan, Suite 300) from 9:30-11:00. The session will be eligible for 1.5 hours of Continuing Legal Education Credit. A captioner will be at the meeting. If you need an additional accommodation to participate, contact Barry Taylor at barryt@equipforequality.org by 3/17. If you can’t attend in person, you can participate via teleconference by calling 800-910-8278 and entering code: 1940990.


  1. Frequently Asked Questions on Immigration
  2. Immigrant Detention Centers in Illinois
  3. Know Your Healthcare Rights for Undocumented People – English
  4. Know Your Healthcare Rights for Undocumented People – Spanish

Top 10 Changes to Medicaid Under House Republicans’ ACA Repeal Bill

Source: Top 10 Changes to Medicaid Under House Republicans’ ACA Repeal Bill

Executive Summary

Following the CBO score that found the House Republicans’ so-called “American Health Care Act” would cause 24 million people to lose health care coverage, NHeLP managing attorneys examine the bill’s “draconian changes” planned for Medicaid. Managing Attorney of the DC Office Mara Youdelman and Managing Attorney of the LA office Kim Lewis conclude that cutting $880 billion in federal funding and 14 million individuals off Medicaid “creates significant financial hardship for states and is devastating for low-income people everywhere. No one can afford these changes.”

Reaching People in Multiple Languages

Source: Reaching People in Multiple Languages

The National Institute on Minority Health and Health Disparities (NIMHD) envisions an America in which all populations will have an equal opportunity to live long, healthy, and productive lives. NIMHD is committed to supporting research and communications efforts to improve cultural competency and health literacy. We offer this portal as a resource to our stakeholders who work with health disparity populations with limited English proficiency (LEP) to help improve language access to health information produced by NIH and other federal agencies.

How NIMHD Plans to Reach People in Multiple Languages

Dr. Pérez-Stable: Bridging Health Gaps through Language Access

Health Information in Multiple Languages

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National Rehabilitation Information Center | Information for Independence

People with disabilities may have more complex healthcare needs than people without disabilities. Receiving regular healthcare can help people with disabilities avoid preventable health problems, but they may have difficulty getting necessary medical or dental care. Their health insurance may not cover all of their needs, or they may encounter other barriers such as a lack of transportation to get to the doctor’s office. As a result, they might put off or skip getting necessary care putting them at risk for expensive health emergencies. In a recent NIDILRR-funded study, researchers looked at how commonly working-age adults with and without disabilities delayed or skipped needed healthcare services. The researchers wanted to find out if community-dwelling, working-age adults with disabilities were more likely to skip needed care than those without disabilities, even if they had insurance. The researchers also wanted to see if people with certain types of disabilities or health issues were more likely to skip needed care than people with other types of disabilities, and what the reasons were for delaying or skipping care.

Source: National Rehabilitation Information Center | Information for Independence

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Why Increasing Numbers of Physicians with Disability Could Improve Care for Patients with Disability, Oct 16 – AMA Journal of Ethics

Expanding the numbers of physicians with disabilities would facilitate patient-centered care for those who need similar accommodations. AMA Journal of Ethics is a monthly bioethics journal published by the American Medical Association.

Source: Why Increasing Numbers of Physicians with Disability Could Improve Care for Patients with Disability, Oct 16 – AMA Journal of Ethics

Lisa I. Iezzoni, MD, MSc


Erroneous assumptions among health care professionals about the daily lives, preferences, values, and expectations of persons with disability can contribute to documented health care disparities, faulty communication, and substandard quality of care affecting this heterogeneous population. Efforts to reduce racial and ethnic disparities have focused on expanding diversity in the physician workforce. Would expanding the numbers of physicians with disability benefit patients with disability? Increasing the number of physicians who identify as “disabled” is one strategy for proactively confronting disability-related barriers affecting patients, but such efforts will likely face substantial challenges. Nonetheless, physicians who require accommodations to practice (e.g., a height-adjustable examination table) could plausibly benefit patients needing similar accommodations and perhaps be well-positioned to provide patient-centered care to persons with comparable disability.

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