State Employment First Policies: Research to Practice State

This brief is the first in a series focusing on Employment First implementation as it relates to one of the seven elements within the High-Performing States in Integrated Employment model1. It examines the background of circumstances under which Employment First efforts began in seven states, and introduces each state’s values, mission, and goals around increasing employment opportunities for people with disabilities. States may use the lessons in this brief to develop an Employment First policy, or to evolve existing efforts.

Download State Definitions, Goals, and Values By Jennifer Bose and Jean E. Winsor

Source: ThinkWork 

ThinkWork is a research and training center focused on advancing employment for individuals with intellectual/ developmental disabilities (IDD). ThinkWork has published this brief as the first in a series of briefs on the implementation of Employment First policies. The principles of Employment First state that individuals with IDD can perform work, should should be paid at minimum or prevailing wage rates for this work, and that providing work-specific supports should be the top support priority.

Compare Proposals to Replace The Affordable Care Act | The Henry J. Kaiser Family Foundation

President Donald Trump and Republicans in Congress have committed to repealing and replacing the Affordable Care Act (ACA). How do their replacement proposals compare to the ACA? How do they compare to each other?Plans available for comparison:The American Health Care Act as introduced by the House Republican leadership, March 6, 2017 (PDF)The Affordable Care Act, 2010 (PDF)More plans for comparison:Rep. Tom Price’s Empowering Patients First Act, 2015 (PDF)House Speaker Paul Ryan’s A Better Way: Our Vision for a More Confident America, 2016 (PDF)Sen. Bill Cassidy’s Patient Freedom Act, 2017 (PDF)Sen. Rand Paul’s Obamacare Replacement Act, 2017 (PDF)House Discussion Draft, February 10, 2017 (PDF)Click the column header to view available plans to compare. You may compare up to 3 plans.

Source: Compare Proposals to Replace The Affordable Care Act | The Henry J. Kaiser Family Foundation



International Summit Consensus Statement: Intellectual Disability Inclusion in National Dementia Plans

Karen Watchman, PhD1, Matthew P. Janicki, PhD2, Michael Splaine, MA3, Frode K. Larsen4, Tiziano Gomiero, PhD5 and Ronald Lucchino, PhD6

1 University of Stirling, Scotland, UK
2 University of Illinois at Chicago, USA
3 Splaine Consulting, Columbia, Maryland USA
4 Norwegian National Advisory Unit on Ageing and Health, Oslo, Norway
5 ANFFAS Trentino Onlus, Trento, Italy
6 Utica College, Sarasota, Florida USA



The WHO has called for the development and adoption of national plans or strategies to guide public policy and set goals for services, supports, and research related to dementia. It called for distinct populations to be included within national plans, including adults with intellectual disability (ID). Inclusion of this group is important as having Down syndrome is a significant risk factor for early-onset dementia. Adults with other ID may have specific needs for dementia-related care that, if unmet, can lead to diminished quality of old age. An International Summit on Intellectual Disability and Dementia in Scotland reviewed the inclusion of ID in national plans recommending that inclusion goes beyond just description and relevance of ID. Reviews of national plans and reports on dementia show minimal consideration of ID and the challenges that their carers face. The Summit recommended that persons with ID, as well as family carers, should be included in consultation processes and greater advocacy is required from national organisations on behalf of families, with need for an infrastructure in health and social care that supports quality care for dementia.

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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Civic Engagement Toolbox For Self-Advocates | Autistic Self Advocacy Network

Right now, many people are getting involved in political advocacy for the first time. People are going to town hall meetings and making phone calls to their members of Congress. They’re writing letters and using social media to organize advocacy groups.This new wave of political advocacy is incredible. And people with disabilities need to be a part of that. That’s why we’re pleased to announce a new series of plain language toolkits. These toolkits focus on the basics of civic engagement. Civic engagement means actively participating in our democracy. In a democracy, regular people choose, or elect, who gets to be in government. The people we elect should listen to our concerns and advocate for us in the government. But when they don’t do that, we have the right to make our voices heard. In short, civic engagement means:learning about how the government works, andmaking sure that the people we elect to government listen to us.They Work For Us: A Self-Advocate’s Guide to Getting Through to your Elected OfficialsThe first toolkit is “They Work For Us: A Self-Advocate’s Guide to Getting Through to your Elected Officials.” This toolkit is about:who our elected officials are, andwhat strategies self-advocates can use to get our voices heard by the people we elect to represent us.They Work For Us covers:Who our elected officials areHow to contact your elected officialsStrategies, scripts, and templates to help you effectively communicate with your elected officialsHow to use social media for political advocacySome parts of the toolkit are available as short stand-alone fact sheets. Click the links below to download the toolkit and fact sheets as PDF files. The PDFs are screenreader-accessible.They Work For Us: A Self-Advocate’s Guide to Getting Through to your Elected OfficialsFact Sheet: How to Call Your Elected OfficialsFact Sheet: In-Person Meetings with Elected OfficialsFact Sheet: Sending Elected Officials Emails, Letters, and Faxes

Source: Civic Engagement Toolbox For Self-Advocates | Autistic Self Advocacy Network

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Federal Register: Administration on Intellectual and Developmental Disabilities, President’s Committee for People With Intellectual Disabilities

Source: Federal Register: Administration on Intellectual and Developmental Disabilities, President’s Committee for People With Intellectual Disabilities


Administration for Community Living, HHS.




Thursday, March 23, 2017 from 8:30 a.m. to 5:00 p.m.; and Friday, March 24, 2017 from 9:00 a.m. to 3:00 p.m.

These meetings will be open to the general public.

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Conference | DDNA

Source: Conference | DDNA

“Celebrating our Past, Shaping our Future”

2017 Conference Overview

The 2017 conference theme is “Celebrating our Past, Shaping our Future!”  As the premiere resource for practicing I/DD nurses, DDNA is committed to providing quality education programs that include cutting edge content with practical application.


DDNA’s 2017 annual conference will be structured a bit differently than in previous years – offering a longer conference program and more accredited continuing education courses and opportunities! The conference registration fee will include 3 ½ full days of conference program and continuing education, offering over 23 hours of continuing education.

As we celebrate our silver anniversary, we would also like to offer our members an additional reason to celebrate with us!   With the longer conference program and additional continuing education, this year’s conference rate is 5% below the 2016 conference fees for comparable hours of continuing education.  The conference will also offer a pre-conference program, providing 6 additional hours of continuing education, available to all conference attendees as an additional purchase!

The result – over 29 hours of continuing education are available with attendance at all conference and pre-conference programs!

Target audience: Health care professionals working in the field of intellectual and developmental disabilities.

Overall objectives: The goals and objectives of the conference are:

  • To present cutting-edge education on the most up-to-date practice issues and research regarding the specialty of developmental disabilities nursing.
  • To provide a forum for networking and to facilitate the sharing of information to improve nursing practice in the developmental disabilities field.
  • To bring together leaders and experts in developmental disabilities to engender consensus that improves the health and lives of persons with developmental disabilities.

Outcomes of “Partnering to Transform Healthcare with People with Disabilities” (PATH-PWD) conference

Research Team Sarah H. Ailey Principal Investigator Rush CON Molly Bathje Co-Investigator Rush CHS Tamar Heller Co-Investigator University of Illinois Award Period 6/1/16 – 5/31/17 Funding Source Agency for Healthcare Research and Quality (AHRQ) R13 Conference grant

Source: Partnering to Transform Healthcare with People with Disabllities (PATH-PWD) – Improving Acute, Primary and Transitional Health care with People with Disabilities | | Rush University

On March 23 and 24, 2017, leaders on disability rights and disability health care from around the country gathered at Rush University for the Partnering to Transform Healthcare with People with Disabilities (PATH-PWD) conference sponsored by Rush University and the Rehabilitation Research and Training Center on Developmental Disabilities and Health, University of Illinois at Chicago. The conference was funded by grants from the Agency for Healthcare Research and Quality (AHRQ) and the Special Hope Foundation.

IASSIDD PowerPoint presentation of the “Tackling Health Disparities and Implementing a Best Practices Healthcare Model: Report from (PATH-PWD) Conference” presented at the American Academy on Developmental Medicine and Dentistry (June 5, 2017).
Sarah H Ailey PhD RN APHN-BC CDDN, Tamar Heller, PhD, & Molly Bathje, PhD, OTR/L

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