the advocacy monitor

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

Help Our Money Follows the Person Advocacy – Share Your Experiences this Week!

As you know, NCIL aims to bring your issues and concerns to legislators on the Hill. Because Centers for Independent Living (CILs) are the only entities that are Congressionally-mandated to do transition work, it is imperative that we are able to tell members of Congress about the difficulties CILs are experiencing in participating in the Money Follows the Person (MFP) Program.

As such, we need your stories.

Please tell us what state you are in and:

  1. If you have been locked out of participating in the MFP Program;
  2. If you have had difficulty participating in the MFP Program and why; and
  3. If the bureaucracy has made it difficult / impossible for you to participate in the MFP Program.

Please share your responses with Sheryl Grossman, NCIL Community Living Advocate, at, by Friday, September 13, 2019.

In the Wake of Hurricane Dorian, Donate to NCIL’s Disaster Relief Fund

Hurricane Dorian is closing in on the coast of Florida, Georgia, and the Carolinas. Thousands of people have already been displaced in the Bahamas as the storm moved through. People with disabilities in the disaster-affected areas are at risk for institutionalization – and once in an institution, they may never get out.

The core service of diversion and transition takes on new urgency during a disaster. In fact, during Hurricane Florence, staff from one North Carolina Center for Independent Living “provided significant guidance and technical assistance that ultimately prevented all but six of over one hundred evacuees from being institutionalized”, according to the National Council on Disability.

But CILs can’t provide these services if they themselves are damaged or destroyed. That’s where you come in.

Your contribution to NCIL’s Disaster Relief Fund enables Centers for Independent Living that are damaged or destroyed in disasters to get back to providing crucial services for people with disabilities as soon as possible. Make a donation todaypeople with disabilities in the path of Hurricane Dorian are depending on you.

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.

[Read more…]

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.

[Read more…]

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.