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

What has Changed?

By Andy Reichart, Assistant Director, Prairie Independent Living Resource Center (PILR)

Last month I had the opportunity to attend the National Council on Independent Living Annual Conference in Washington D.C. As I was flying out I was thinking… I should write an article for one of our next newsletters!

In my mind I was thinking I could tell everyone about the wonderful experience I had gathering with my peers from across the country. I was finally meeting some of the people I have only talked to on the phone.

I would be able to share my personal account about how great it was for all of us to have this shared experience as we all marched to the Capitol and participated in a Disability Rights Rally right on the front lawn of the Capitol.

I could provide all the details about how individuals with disabilities from every region of the country were able to participate in the legislative process by meeting with their own elected officials and as a united front share our disability issues and concerns.

Yeah, it was all of that and so much more!

Well, the story doesn’t end there. On the flight home, I kept having the same thoughts running around in my head. Once I got back at work, I continued to be haunted by a panel discussion that took place during the conference opening session.

To make a long story short, every organization, large or small, has issues that from time to time require all of us to confront issues on an organizational level. With that said, the topic of this panel discussion was about issues as they relate to race, its impact organizationally, its impact on participation and ultimately its effect on membership.

The panel discussion was organized and very well done. Personally, what I can tell you is that the mood of the room was tense and you could feel the emotion of those who spoke. I was surprised by my physiological response; my heart rate increased and I was very uncomfortable. I never really considered myself racist. Yet everything in my world has always been white. The family I was born into, the town I grew up in, the church I went to, the schools I attended, even my friends were white growing up. It wasn’t until college that I was able to meet and work with individuals of color.

As I listened to the panel speak and interact with the audience, I remember thinking, I haven’t done anything! Wait a minute…I haven’t done anything! I really don’t know anything about the subject of race. One of the panel members challenged the audience to read a book called: White Fragility: Why It’s So Hard for White People to Talk About Racism by Robin DiAngelo and Michael Eric Dyson.

It was this challenge that I had been struggling with since my return to Kansas. As a white man who will be 55 years of age this year, I found it hard to believe that I was not aware. It has been very disorienting for me to get this far in life and know so little on the subject of race. I thought I was just going to a conference. I would go, come home, go back to work and carry on as usual. Of course, I will always have the stories I shared at the beginning of the article, but something happened at the panel discussion that changed me.

What has Changed? Well, I bought the book and I have finished reading it. I am still processing the definitions and impact of white fragility. I’m trying to wrap my mind around the concepts and create a new framework from which to navigate my own thoughts and bias. I don’t know how much I can change; all I know is that I want to try.

I too would like to personally extend this book reading challenge to our entire PILR staff, our consumers and our community partners. I think our humanity depends on our willingness to understand our roles individually, societally and as a member of the human race. Intellectually, we are charged; as is justice, to not only seek but to find the truth. It is critical to recognize truth when it is evident in order to repair the institutional and psychological barriers that prevent us from achieving the ultimate goal of racial peace. I have always judged our humanity on two factors; are we still killing each other and are there people on our planet who are still starving? Without engaging in constructive and positive racial conversations we continue to participate in the status quo. As a result, if we are not willing to talk to each other about race nothing will ever change.

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Organizers Forum: Fighting Racism & White Supremacy

As we hit 400 years since the beginning of slavery in the U.S., hundreds of Latinx immigrants are forced into camps, and the President himself encourages racism and violence, let’s talk about how we in disability communities can take action. What work needs to be done within the disability rights movement, and how can we act in solidarity with immigrant rights groups and others? More conversations like this are happening in disability spaces. Let’s use this call as an opportunity to keep learning and growing.

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2019 Annual Conference Photos Now Available!

We are very happy to announce that all 3,110 pictures from NCIL’s 2019 Annual Conference on Independent Living are now available on Flickr.

We have created an album of 300 select (captioned) photos that capture the overall feel of the 2019 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.

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. We can also take requests for specific photos at the email address above.

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NCIL Condemns “Public Charge” Rule Finalization

The Trump Administration’s final public charge rule was published in the federal register on Wednesday, and it is set to become effective on October 15, 2019. This policy is yet another cruel attack on immigrants, and it will have a particularly harmful effect on disabled and poor immigrants. NCIL condemns the finalization of this rule.

The new public charge rule will create additional barriers for immigrants, and especially disabled and poor immigrants, to enter the US or become lawful permanent residents (green card holders). Under the new rule, receiving benefits like Medicaid, housing assistance, SNAP, and certain healthcare subsidies can be used to deny entry or permanent residency.

Similarly, having medical conditions or disabilities that require “extensive medical treatment” or institutionalization, or that may interfere with providing care for oneself or attending school or work, can also be used to deny entry or permanent residency. Disabled and low-income immigrants are squarely in the crosshairs with this rule. Read NCIL’s previous alert with additional information about the public charge proposal. The IL network also took action when the rule change was proposed. 

This rule is blatantly discriminatory and once again makes clear who this administration is prioritizing. NCIL strongly opposes this harmful rule and stands in solidarity and support of our immigrant community members. Our strength as a country and a community comes from our diversity, and we call on the Independent Living community to fight to ensure disabled immigrants have a place in our community and a path to citizenship.

ACL Seeks Input on Proposed SPIL Instrument and Instructions Revisions

On Monday, August 12, the Administration for Community Living (ACL) published proposed revisions to the State Plan for Independent Living (SPIL) Instrument and Instructions in the Federal Register. These changes have been long anticipated and are the result of changes to the Rehabilitation Act of 1973 contained in the Workforce Innovation and Opportunity Act (WIOA) of 2014. They are the result of the work of a committee formed at the request of the Independent Living Administration (ILA) by Independent Living Research Utilization (ILRU) that included representatives of Statewide Independent Living Councils (SILCs), Centers for Independent Living (CILs), Designated State Entities (DSEs), and the ILA.

Comments must be submitted electronically by 11:59 p.m. EST or postmarked by October 11, 2019. Comments can be submitted electronically to Peter Nye at or mailed to Administration for Community Living, Washington, DC 20201, Attention: Peter Nye. For further information, you can contact Peter Nye at (202) 795-7606 or

NCIL’s Rehabilitation Act & IL Funding Subcommittee will be reviewing the new Instrument and Instructions and developing comments on behalf of NCIL. Once these comments have been developed, we will send them to the NCIL membership to use as you draft your own comments. It is important that ACL hear from members of the Independent Living community before the comment period is over, so stay tuned for more information.

NCIL Survey to Document the Impact of Electronic Visit Verification in the United States

The 21st Century Cures Act, passed into law December 2016, includes a provision requiring all states to implement Electronic Visit Verification (EVV) systems for home health care services and personal care services paid by Medicaid. Each state must have some form of EVV in use by January 1, 2020.

States are required to: ensure a robust stakeholder engagement process with consumers and independent providers of home care services; follow best practice guidelines; and ensure training is provided on use of EVV systems.

NCIL is conducting a survey on the impact of EVV in the United States. The intent and purpose of this survey is to collect information from end users of EVV systems (consumers and their home care providers) regarding their experience participating in their state’s EVV selection process and use of EVV on a regular basis. Please include as much information as you are willing to provide.

The survey is also available in Word and plain text.

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SILC-NET Presents… A National Teleconference & Webinar: Planning for Success – Effective Resource Development at Statewide Independent Living Councils (SILCs)

September 17, 2019; 3:00 – 4:30 p.m. Eastern

Register online or by using the printable registration form (PDF)

Is your SILC interested in fundraising, but not sure where to begin? This webinar is perfect for SILCs that would like to begin fundraising, but want more information on the rules and best practices of SILC resource development.

Our presenters are both SILC Executive Directors that have successfully increased revenue for their SILCs while ensuring that their activities are compliant and tied directly to the State Plan for Independent Living. They will cover the relevant regulations for SILCs to follow, real-world examples of funding sources for SILCs, and how to plan for future growth.

You won’t want to miss this exciting webinar!

Registration Fee: $75.00. Fee is per site and does not apply per participant; registrants are encouraged to gather as many individuals as desired to participate.

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Information for Members About NCIL Advocacy and Lobbying Activities

Like other 501(c)(3) tax-exempt organizations, NCIL is allowed to and does engage in lobbying within the applicable restrictions set by law. We understand that since many of our member organizations receive federal funding, there have been concerns about whether payment of NCIL membership dues may create issues regarding restrictions on members’ use of federal funds for lobbying. We wanted to take a moment to put those fears to rest.

NCIL does NOT use money received through membership dues for lobbying; any funds that NCIL expends on lobbying is paid from other, unrestricted funds. The money we receive through membership dues helps fund the many educational, developmental, and critical non-lobbying advocacy efforts and projects NCIL staff work on day in and day out. We have good basis to believe that the law permits members to pay dues to NCIL in consideration for NCIL’s non-lobbying work such that paying those dues to NCIL does not count as federal funds being used for lobbying.

To learn more about NCIL membership, visit our membership page at

Register Today: Making AT for All Conference and Expo

  • September 24 to 25, 2019
  • Monroeville Convention Center; Monroeville, PA
  • Register online at

Keynote Presentation: “Making AT Around the Country” By Brady Fulton, AT Nomad

Nationally renowned expert Brady Fulton will talk about the potential for making custom assistive technology across the United States.

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NCIL Condemns Trump’s Remarks on Mental Health and Violence

In less than 24 hours, two mass shootings in El Paso, Texas and Dayton, Ohio killed 31 people and wounded many more this weekend. NCIL mourns the loss of these 31 individuals, and our hearts are with the victims, their loved ones, and their communities right now.

In El Paso, we know the shooter was targeting immigrants; less is known about the Dayton massacre at this time. In response to the shootings, the President called those who committed the massacres “mentally ill monsters.” It is clear, however, that the massacre in El Paso, like many of the other recent tragedies we have seen across the country, was rooted in white supremacism that has been emboldened by our President. There is a direct connection between these tragedies and the racist, xenophobic, and otherwise discriminatory rhetoric and policies spewed by Trump and his Administration – particularly in this case the ongoing dehumanization of immigrants.

In his remarks, Trump proposed specific ways to reform our mental health laws, which included “involuntary confinement” of people with mental illness. His remarks and proposed ‘reforms’ are incredibly dangerous. It is unacceptable to deprive a group of disabled people their rights based solely on diagnosis and unfounded fear. Decades of research shows that people with psychiatric diagnoses are no more likely to be violent than people without, and in fact are much more likely to be victims than perpetrators of violence. Enacting the reforms proposed by the President would trample on the rights of disabled people and ultimately do nothing to reduce gun violence. 

Conflating hate, racism, xenophobia and other forms of bigotry with mental illness is inexcusable. It is dangerous, false, and undermines efforts to address the true root of this violence. Trump’s rhetoric only serves to scapegoat disabled people and shift focus away from his own role in enabling this violence.

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