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

Independent Living & The Rehabilitation Act

NCIL Mourns the Loss of Marca Bristo

To our NCIL family,

It is with a heavy heart that we write to inform you of the passing of Marca Bristo. Marca passed away on Sunday, September 8 from cancer. Until stepping down just recently because of her prognosis, Marca was President and CEO of Access Living, the Center for Independent Living she founded in Chicago, IL nearly 40 years ago. She co-founded NCIL in 1982 and served as our second President. Marca was a tireless activist who dedicated her life to fighting for disability rights, and the Independent Living community has lost an incredible advocate and friend.

Sarah Launderville, NCIL’s President and long-time friend of Marca described Marca as a force and a kindred spirit. Sarah said, “Marca was a trailblazing advocate. She had a very kind heart and built relationships, and she also had a sharp edge that got things done. She will be deeply missed, and my heart goes out to the IL community as we grieve this incredible loss.”

Marca was a staunch advocate for local, national, and international disability rights for over four decades. In addition to her roles with Access Living and NCIL, she served as the first disabled Chair of the National Council on Disability (NCD) from 1994-2002 and more recently as the President of the U.S. International Council on Disabilities. Her advocacy led to some of our community’s biggest achievements, including helping to author the Americans with Disabilities Act (ADA) and participating in negotiations for the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Marca has received numerous awards and honors for her disability rights work including: the Distinguished Service Award of the President of the United States in 1992; the Henry B. Betts Laureate in 1993; the 2007 Chicagoan of the Year by Chicago Magazine; being selected as a co-chair of Governor Pritzker’s Transition Committee on Human Rights; and just this summer, being awarded NCIL’s Max Starkloff Lifetime Achievement Award at the 2019 Annual NCIL Conference.

Kelly Buckland, NCIL’s Executive Director, said, “I will remember Marca for a lot of reasons, but the one that most often comes to mind was my first NCIL Conference in 1989. Marca was President of NCIL and led a March on the White House to get President George H.W. Bush to support the ADA. That led to a meeting between the NCIL leadership and the White House the next morning, and eventually led to White House support for the ADA. She was truly a great leader and I am honored that I got to know and work with her. The world is a better place because of her.”

Marca was in a league of her own. The Independent Living Movement has lost a passionate and visionary leader. She will be missed dearly, but her memory will certainly live on. And, as a previous Board Member and leader in the Independent Living movement, Marca’s picture will be added to the Wall of Fame in the NCIL office.

We would like to express our sincere condolences to Marca’s family and friends during this difficult time. A private funeral and burial will be held for Marca’s family. A public memorial service will be announced at a later date.

Read more about Marca in Access Living’s tribute.

Marca Bristo and Judy Heumann clasp hands and smile for a photo from the stage at the 2007 NCIL Annual Conference on Independent Living
Marca Bristo and Judy Heumann smile and pose for a photo from the stage at the NCIL Annual Conference on Independent Living

NCIL Statement on Inspector General Report

On August 14, the U.S. Department of Health and Human Services (HHS) Office of Inspector General (OIG) released a report entitled “The Administration for Community Living Failed to Conduct Any of the Required Onsite Compliance Reviews of Independent Living Programs” (PDF). In the report, OIG found that the Administration for Community Living (ACL) has not conducted any of the onsite compliance reviews of Centers for Independent Living (CILs) or Independent Living Services – which are required by law – since they began oversight of the Independent Living (IL) Program in July 2014.

Since the IL Program transferred to ACL in 2014, we have been urging ACL to conduct these onsite compliance visits (and to provide written reports to CILs based on these visits). In fact, we also asked the Rehabilitation Services Administration to conduct onsite reviews when the IL Program was housed there. We have been asking for these reviews because it is our belief that in addition to being required under the law, these reviews are a critical part of ensuring the ongoing quality of the IL program.

The main goal of the IL program is to maximize the independence and the empowerment of people with disabilities over their own lives. The IL program is carried out primarily through the services of Centers for Independent Living (CILs), which provide these services to people with disabilities around the country. CILs are community-based, cross-disability, non-profit organizations that are designed and operated by people with disabilities. CILs operate according to a strict philosophy of consumer control, wherein they are directly governed and staffed by people with disabilities. The CIL network is doing incredible work around the country. Just a small amount of that work can be seen in our annual report.

While these reviews are indeed critical to the IL Program, the program is already operating on an inadequate budget and therefore ACL must not use existing program funding to conduct the reviews. The OIG report indicated that ACL did not allocate sufficient funds to support onsite compliance reviews. In ACL’s response, they indicated that funding has been a barrier to conducting these reviews. It is the responsibility of the HHS Secretary to ensure the Independent Living Administration has adequate funding to meet their requirements under the law – and to request increased appropriations if needed. Therefore, program dollars must not be taken to meet these requirements.

Again, NCIL is committed to ensuring that the IL network is as strong as possible. That includes not only meeting our requirements under the law (of which these reviews are an important piece), but also going beyond that to focus on continually improving our network through efforts like our Outcomes Measures Task Force and providing ongoing training and technical assistance opportunities. We reiterate our request and support for onsite compliance reviews with written reports, and we are ready and willing to work with ACL to move forward together.

New Resource: CILs and Parenting with a Disability

Centers for Independent Living (CILs) can be powerful allies for parents and prospective parents with disabilities and are uniquely suited to participate and lead advocacy efforts and provide appropriate services. NCIL’s Parenting Task Force created a one-page resource to assist CILs in understanding how they can support disabled parents through systems advocacy and other CIL core services.

If you are interested in joining the Parenting Task Force, we are actively recruiting new members! Please contact Kimberly Tissot at for more information.

CIL-NET Presents… A National Teleconference & Webinar: Top 10 Mistakes That Can Put Your CIL or SILC At Risk

September 25, 2019; 3:00 – 4:30 p.m. Eastern

Presented by: Paula McElwee

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

The title says it all. This webinar will cover the top 10 things that cause problems for CILs and SILCs. From financial management to consumer control, running a strong CIL or SILC takes good leadership and compliance to the IL philosophy and regulations. Whether you are new to your position or just want to review key areas for organizational health, this presentation is the perfect overview of the types of activities you should prioritize to keep your organization running strong.

Sign up today! You won’t want to miss this 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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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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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.

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

CIL-NET Presents… A National Teleconference & Webinar: IL Partnership with Disability Advisory Councils, Boards, and Commissions

September 10, 2019; 3:00 – 4:30 p.m. Eastern

Presented by: Todd Holloway & Luke Byram

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

The Independent Living (IL) Movement is full of disability subject matter experts who make fantastic advisory council and commission members. Does your city or county have a disability or accessibility body to provide subject matter advice or direction? This webinar will cover positive outcomes and best practices as the result of being involved with your community at the advisory level.

[Read more…]

Information Alert: ACL’s New FAQ Document for CILs

As many of you have seen by now, ACL has released a document entitled FAQ: Allowable Advocacy Activities (Word). The document is intended to describe how CILs can meet federal requirements under the Rehabilitation Act to conduct advocacy without violating federal laws against lobbying with federal funds. We are currently in the process of reviewing this document, but we have major concerns.

Systems advocacy is a core service of Centers for Independent Living, which means CILs are federally mandated to conduct advocacy activities. While understanding what types of advocacy are allowable with federal funds is important, this document demonstrates a clear overreach on the part of ACL. That said, we will not be intimidated, and we will strongly defend the right – and responsibility – of CILs to advocate.

We are currently reviewing this document and considering our response, and we will send out additional information once it is ready. In the meantime, we want to hear from you. We would welcome your thoughts on this document, including any concerns or relevant experiences you would like to share. We also invite you to send any questions you have, and we will respond to those directly or pass them along to ACL with our feedback. Please send your input and questions to Kelly at

Please note: If you are coming to NCIL’s Annual Conference, this document, and concerns and responsibilities regarding advocacy and lobbying will be discussed before the Annual March & Rally and Hill Visits.