the advocacy monitor

Independent Living News & Policy from the National Council on Independent Living


Applications Open: AAPD 2018 Summer Internship Program

Deadline to Apply: November 6, 2017

Seventeen diverse young people with various disabilities pose for a photo togetherSince 2002, the AAPD Summer Internship Program has developed the next generation of leaders with disabilities and offered host employers access to a talented, diverse workforce. Each summer, AAPD places college students, graduate students, law students, and recent graduates with all types of disabilities in summer internships with Congressional offices, federal agencies, non-profits, and for-profit organizations in the Washington, DC area. Each intern is matched with a mentor who will assist them with their career goals. AAPD provides the interns with a living stipend, transportation to and from Washington, DC, and fully-accessible housing.

At the beginning of the summer, interns participate in a 1-week orientation session to learn about AAPD and the disability rights movement, meet the other interns, and participate in a variety of engaging workshops and events. As part of the AAPD network, interns also receive opportunities to attend events on Capitol Hill, conferences, community events, briefings, and more.  [Read more…]

A Message of Support for Hurricane-Affected Regions from the NCIL Emergency Preparedness Subcommittee

Dear Centers for Independent Living, SILCs, and IL Associations:

As Texas continues to deal with the aftermath of Hurricane Harvey and our Southeastern states prepare for the impact of Hurricane Irma, the National Council on Independent Living, through its Emergency Preparedness Subcommittee, stands ready, willing, and able to assist you in whatever way we can. Please know that our thoughts remain with all those affected by Harvey in Texas and that we are aware the recovery will be a lengthy process. We have been in contact members in Texas and pledged our assistance and support now and in the coming years. We offer the same support and assistance to the states in the path of Hurricane Irma. Our thoughts are with you in the coming days and we hope that all remain safe and unharmed.

NCIL logo - National Council on Independent LivingIn the aftermath of the storm, NCIL Emergency Preparedness Subcommittee members can be available by phone to make calls and / or coordinate resources on the ground for you. We are in close contact with agencies and organizations that are available to assist, including the Office of Disability Integration and Coordination (ODIC) with FEMA, Portlight Inclusive Disaster Strategies, and the Red Cross. NCIL is represented on local and national stakeholder calls hosted by the Partnership for Inclusive Disaster Strategies and will host calls themselves among CILs in any state, if needed. The NCIL Emergency Preparedness Subcommittee has members throughout the country who are ready and willing to help.

We are learning that it is often a week or longer before a CIL can tell us what their needs may be. We will be in contact with CIL and SILC staff next week to check on their wellbeing and then discuss how we might be of assistance in the future. In the meantime however, please feel free to call Emergency Preparedness Subcommittee Chairperson Christy Dunaway (Mississippi) at 601-506-6454 or Co-Chair Todd Holloway (Washington) at 253-826-1287 if you have questions or need assistance.

NCIL Emergency Preparedness Subcommittee Members

NCIL Condemns the Decision to End DACA

The National Council on Independent Living (NCIL) condemns the Trump Administration’s decision to end the Deferred Action for Childhood Arrivals (DACA) program. Ending DACA will not only negatively impact the 800,000 DACA recipients (known as Dreamers) who were promised the opportunity to live, study, and work in the US; the loss of everything these 800,000 Dreamers contribute will be felt in our communities all over the country.

NCIL logo - National Council on Independent LivingThe DACA program provides protection from deportation to young people who came to the US as children. These are young people who came to America for the promise of a better life, who went through arduous background checks to register for the program, and who are now pursuing their education and working to provide for themselves and their families. Dreamers are contributing to this country not only through their work, but also by enriching their communities and adding to the diversity of this country.

The decision to end DACA is reflective of the Trump Administration’s allegiance to discriminatory, biased policies that only further the interests of white wealthy people. The decision sharply reinforces the Administration’s bias against immigrants and people of color, and NCIL strongly opposes this racist agenda.

While there are no statistics on how many Dreamers have disabilities, there’s no question that many Dreamers and their family members are part of the Independent Living community. Many immigrants come to the US for better opportunities as well as better medical care for disabilities and chronic conditions. Trump has made it clear that he views immigrants as a drain on society, and that closely mirrors his views on people who receive disability benefits (as illustrated by his proposal to significantly cut SSDI, SSI, and Medicaid). Immigrants with disabilities have long been at a disproportionate risk for detainment and deportation, and ending DACA only increases that risk for disabled Dreamers and their families. For disabled Dreamers and for all 800,000 Dreamers, ending DACA will upend lives, rip families apart, and damage communities across the country.

The Administration is allowing a six-month “delay” to give Congress time to work on an alternative immigration reform plan. NCIL calls on Congress to protect these 800,000 Dreamers, and to refuse to use their lives and livelihood as a bargaining chip. Bipartisan support for protecting the Dreamers has been voiced, and we urge the Independent Living community to support the Dreamers in our communities and around the country by holding our Members of Congress accountable. Our strength as a country comes from our diversity, and NCIL stands in solidarity with other marginalized communities to fight for equity.

Congress Is Back – Help Protect Our Rights.

35th Anniversary Logo: NCIL – National Council on Independent Living. Celebrating 35 Years of Advocacy. Graphic features party candles.Congress has returned from recess and it’s time for us to gear up for another round of the fight. We may have defeated the healthcare bill, but Medicaid is still in danger. The proposed budget would cut $610 billion from Medicaid and $72 billion from Social Security disability programs. Without the crucial income and healthcare stability provided by Medicaid and Social Security, many people with disabilities would be forced into institutions or even face death.

Currently, NCIL is one of the only disability rights organizations doing advocacy on a national scale. But we can’t do it alone.

Will you give to NCIL to make sure we can continue fighting for community living?

We can’t lose the momentum we had over the summer. With your help, we can tell Congress to keep their hands off Social Security and Medicaid.

Donate now – your contribution is tax deductible!

Give Now to Aid Disabled Victims of Hurricane Harvey!

Hurricane Harvey has wreaked havoc over Houston, Texas, and surrounding areas. Streets and homes have been flooded, with rescue workers navigating the city by boats to rescue trapped victims.

Organizations like the Red Cross often aren’t prepared to assist disabled people during an emergency. Disabled people are at increased risk for injuries and death during disasters, with the fatality rate among people with disabilities up to twice the fatality rate of people without disabilities.

NCIL logo - National Council on Independent LivingThere are two ways you can aid disabled victims of Hurricane Harvey:

  1. Portlight Inclusive Disaster Strategies focuses specifically on disaster relief for people with disabilities. They have been mobilizing on the ground in Texas since the storm made landfall, coordinating rescue efforts for people with disabilities who are unable to evacuate easily. Your contributions will help disabled victims of Hurricane Harvey find safety. Please note, contributing directly through the PayPal link on Portlight’s website will allow the money to reach those who need it faster than a Facebook fundraiser.
  2. NCIL’s Disaster Relief Fund aids Centers for Independent Living that are damaged in disasters. Your contributions to the Disaster Relief Fund will help CILs in Texas repair and rebuild in order to get their services going again as quickly as possible. When people with disabilities have lost their homes due to disasters, it is even more crucial for CILs to provide services that will keep people with disabilities living in the community.

Regardless of where you choose to donate, every dollar helps. Whether you give $10.00 or $100, your contribution is greatly appreciated by Portlight, NCIL, and the people of Texas.

Free Webinar – From Mission to Fruition: Developing Your Relationships with Payers

Source: National Association of States United for Aging and Disabilities (NASUAD) and Administration for Community Living (ACL)

Community Based Organizations (CBO)* seeking to sell or deliver services to health plans and other payers must evaluate their market, understand their value proposition and target services to needs. This activity requires CBOs to gather information that will provide insight and a new perspective on potential opportunities. Successful organizations will use that information to creatively adapt to the environment they are working within.

Join ACL and NASUAD on August 23, 2017 from 12:30 – 1:30 p.m. Eastern as Lee Schulz, President and CEO of IndependenceFirst in Milwaukee, Wisconsin and Carrie Hobbs Guiden, Executive Director of The Arc Tennessee in Nashville, TN provide examples, lessons learned and tips on how to engage with the payer community.  [Read more…]

Wrap Up: NCIL 2017 Annual Conference on Independent Living

Revolution - A Global Independent Living Movement - Annual Conference on Independent Living 2017. Graphic: Continents have been added to NCIL's logo (a blue semi-circle), which forms a globe. A red heart sits between the end points of the semi-circle.


Introduction and Evaluations

The NCIL 2017 Annual Conference on Independent Living was an extraordinary experience. This year’s theme, Revolution – A Global Independent Living Movement brought leaders from across the world. At the 2017 International IL Summit, disability advocates from 19 countries drafted, delegated, and announced the World Independent Living Network (WIN).

Attendance went above and beyond our expectations with 1,053 Conference participants and over 2,000 people at the March & Rally. The voice of the Independent Living community thundered throughout the streets of Washington, D.C. as we made our way to the U.S. Capitol. Once at the Rally, we heard from disability rights advocates, Members of Congress, and other influential speakers who spoke about their commitment to disability and civil rights – and the need for action.

The NCIL Youth Caucus raised over $20,000 to support travel and lodging for 40 youth with disabilities to attend this year’s Conference, which featured several powerful youth speakers at the Awards Luncheon, Closing Plenary, and Rally. We are proud that the 2017 Annual Conference on Independent Living served as a platform to amplify the voices of youth within the IL Movement.

We want to thank each and every one of the advocates that attended the 2017 Annual Conference on Independent Living. This year’s Conference was outstanding because of your presence and participation. We would also like to thank our sponsors, who are listed below.

Please read on for further details. If you attended the Conference but did not submit an evaluation on-site, please take a few moments to tell us about your experience.

Photos Now Available!

We are very happy to announce that all 2,133 pictures from NCIL’s 2017 Annual Conference on Independent Living are now available on Flickr. We apologize that we do not have the capacity or knowledge to caption every picture. If you see a picture of yourself or others you know, please caption it for the benefit of all. This year, we’ve created an album of select (captioned) photos that capture the overall feel of the 2017 Annual Conference. If you would like a specific photo added to this collection, please caption the photo in the comments or email with the link and a description. You can comment on photos using a Flickr / Yahoo account. Special thanks to Michael Clegg for his amazing photos and, as always, thanks to our members, who made these photographs what they are: the story of our people gathering in our nation’s Capital to bring about equality and freedom for people with disabilities!

NCIL March, Rally, and Hill Visits

This year’s Annual March and Rally was a huge success and one of our biggest in NCIL’s history! Conference attendees and local advocates marched in solidarity through the streets of D.C. to the US Capitol, all the while making sure that our voices were heard! From chants to signs, we made sure that everyone in our path knew that disability rights are civil rights, and the Independent Living community refuses to be ignored!  [Read more…]

Disability Network Business Acumen Learning Collaborative Seeks Resources from IL Field

NCIL is working with the National Association of States United for Aging and Disabilities (NASUAD) and other partners on the Disability Network Business Acumen Learning Collaborative. In order to create a comprehensive Toolkit of resources, we are looking for input from the Independent Living network.

Specifically, we are looking for best practices and resources that relate to the following topics (links to online resources are welcome):

  • Articulating Your Business Case: Developing an effective process for deciding what products / services to sell and understanding the true / full costs for the products / services.
  • Pricing Services
  • Successfully Changing Organizational Culture
  • Stakeholder Engagement

Please send any resources, best practices, or documents to by Thursday, August 10.

Geography and Rural Disability Maps from RTC:Rural

Explore Geography and Rural Disability research and data through “Disability in America,” a new series of maps from RTC:Rural!

These maps are based on demographic data collected through the American Community Survey and cover disability rates, rates of particular types of disabilities, and other status of people with disabilities such as poverty and employment. They were created as part of the Geography and Rural Disability project and have implications for organizations and agencies working on disability topics nationwide. This work was funded by the National Institute on Disability, Independent Living, and Rehabilitation Research.

The Research and Training Center on Disability in Rural Communities (RTC:Rural) has studied disability patterns in America for 30 years. Researchers are available for technical assistance.

NCIL Conference Less Than Two Weeks Away: Additional Speakers Confirmed!

Revolution - A Global Independent Living Movement - Annual Conference on Independent Living 2017. Graphic: Continents have been added to NCIL's logo (a blue semi-circle), which forms a globe. A red heart sits between the end points of the semi-circle.We’re looking forward to seeing many of you at this year’s Annual Conference on Independent Living from July 24-27 in Washington, DC! If you haven’t registered yet, see below for more information. You don’t want to miss it!

We are happy to announce the confirmation of two additional speakers to our lineup. This year, we are excited to welcome Judy Heumann as our keynote speaker and Melissa Ortiz, who will be joining Bob Williams at our closing plenary.

Judy Heumann is an internationally recognized disability rights activist and an early leader in the Independent Living movement. She is one of the leading voices on disability rights around the world, which makes her perfect to keynote this year’s NCIL conference focusing on the Global Independent Living Movement!

Since the 1970s, Judy has been a powerful force in the disability community. She has a long history of working for disability rights, which has included working for state government, the federal government, and non-profit organizations. She also has a long history of involvement and leadership within the Independent Living movement, which includes co-founding, serving as the Deputy Director and serving on the Board of the Center for Independent Living in Berkeley. Judy was instrumental in organizing the Federal hearings held at the Berkeley CIL that led to Title VII of the Rehabilitation Act of 1978.

Judy worked as the Assistant Secretary of the Office of Special Education and Rehabilitation Services (OSERS) at the US Department of Education under President Clinton, was the World Bank’s first Advisor on Disability and Development, and served as Special Advisor for International Disability Rights for the US State Department. In addition to co-founding the CIL at Berkeley, she co-founded the World Institute on Disability (WID) and Disabled in Action (DIA). She has also been deeply involved with several landmark pieces of legislation for people with disabilities, including Section 504 of the Rehabilitation Act of 1973, the Individuals with Disabilities Education Act (IDEA – previously known as the Education for All Handicapped Children Act), and the Americans with Disabilities Act (ADA).

Melissa Ortiz joined the Administration for Community Living (ACL) in June of 2017 as the Commissioner of the Administration on Disabilities (AoD). Melissa believes that everyone has the right to life, liberty, and the pursuit of happiness, disabled or not. Her mission is to provide people with disabilities with the necessary tools and supports to live independently. Her belief is that these fundamental rights are woven into our national fabric.

In her role as Commissioner of the AoD, she is enthusiastic about working on behalf of Americans with disabilities. She has worked in the classroom in Nashville, Tennessee, in the nonprofit sector in Washington, DC and New York City, on a number of political campaigns around the country, and has bent the ear of some of the country’s most powerful leaders in the process.

She identifies as a “happy patriot” and is committed to driving a dialogue between both sides of the political aisle and people with disabilities. She is uniquely suited to bridge the gap between these groups and is passionate about creating solutions. She currently resides in Washington, D.C. with her husband Tony and Service Dog Dachshund, Annie Oakley.  [Read more…]