the advocacy monitor

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

Independent Living & The Rehabilitation Act

NCIL Statement on Race & Equity

Please take a moment to read NCIL’s latest statement on race and equity at ncil.org/statement-on-equity-race.

We are linking the statement here because of length, but it is critically important and we want everyone to read this. 

Julie Hocker Nominated for Assistant Secretary of Labor

This Tuesday, it was announced that the President intends to nominate Julie Hocker to be an Assistant Secretary of Labor (Disability Employment Policy). Hocker currently serves as both the Commissioner of the Administration on Disabilities (AOD) and the Director of the Independent Living Administration (ILA) at the Administration for Community Living (ACL).

Hocker became the Director of the ILA this past summer with ACL’s reorganization. NCIL previously expressed concern with the reorganization. We were very concerned because ILA needs a full-time Director; not someone splitting their time with another role. Further, the Rehabilitation Act requires that the Director of the ILA must be an individual with “substantial knowledge of independent living services”.

We sincerely hope ACL will take this opportunity to once again separate these two positions, and that the HHS Secretary will appoint someone with a strong background in Independent Living to serve as the Director of the ILA.

Deadline Extended: Apply for IL-NET’s National Learning Collaborative on Youth Transition at CILs by January 15, 2020!

Deadline Extended! Applications will now be accepted through Wednesday, January 15, 2020 at 11:59 p.m. EST. Apply today!

Are you excited to develop a youth transition program at your Center for Independent Living (CIL), but need a little help to get there?

IL-NET is offering an exciting new approach to support CILs that are ready to make a commitment to young people with disabilities.

Apply online

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Information Alert: Spending Package Passed Congress

Congress has passed a spending package to fund the federal government for the remainder of Fiscal Year 2020 (FY20). Today, December 20, was the day the current Continuing Resolution (CR) was set to expire.

The spending package level funds the Independent Living program at $116,183,000. While level funding is far from what we need, we are very happy that Congress rejected the President’s proposal to cut the Independent Living program by nearly $8 million.

The package also include a 5-month reauthorization (and funding) for Money Follows the Person (MFP), and Spousal Impoverishment protections. While we have been hoping for permanent reauthorization, we will continue pushing toward that in 2020!

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2019 Outcomes: Showcase Your Independent Living Organization!

Deadline: November 15, 2019

Dear NCIL Members,

Please take just a few moments to send NCIL one or two of your Center, SILC, or other Independent Living organization’s biggest accomplishments of 2019 and a photo that represents you or your work.

We are collecting your outcomes and photos for our upcoming Congressional Briefing and 2019 Annual Report.

Photos and accomplishments from our members made the 2018 Annual Report really special and we can’t wait to see what you did in 2019!

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Reminder: Comments Due FRIDAY on ACL’s Proposed SPIL Instrument and Instructions Revisions – Sample Comments Included

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.

SUBMIT COMMENTS BY FRIDAY, October 11, 2019!

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 peter.nye@acl.hhs.gov 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 peter.nye@acl.hhs.gov.

The NCIL Rehabilitation Act & IL Funding Subcommittee has reviewed the new Instrument and Instructions and developed suggestions. Please feel free to use these suggestions to develop your own to submit.

It is important that ACL hear from members of the Independent Living community before the comment period is over, so make sure to submit your comments by Friday!

Getting on Board: Recruitment & Composition for SILCs

IL-NET National Training and Technical Assistance Center Presents… A National Teleconference & Webinar

Getting on Board: Recruitment & Composition for Statewide Independent Living Councils (SILCs)

Building an effective, compliant SILC is a tough job. We all know that SILCs must include a majority of people with disabilities, but there are also limits on terms, CIL representation, state agencies, and more. We must also work to ensure a diverse SILC that matches the demographic makeup of the state. Building a committed, diverse, and engaged Council can be difficult, but it is possible. Join us this October to learn how the SILCs in Ohio and Kansas are meeting this challenge.

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NCIL Mourns the Loss of Duane French

It is with great sadness that we inform you of the passing of a giant in the disability rights field, Duane French. Duane was a longtime member of the Independent Living community and a previous NCIL Board Member. Duane died on September 12, 2019 at 65 years old, from cancer.

Duane was a lifelong advocate who began empowering others early in his involvement with the disability community. Lou Ann Kibbee, NCIL’s Secretary and longtime friend said, “Duane was the first disability advocate I met in 1977 when I started at Emporia State University (ESU) in Kansas, not long after acquiring my own disability. He was the President of the Handicapped Students Association. Duane got me fired up when I listened to him about making changes on the campus. I soon became the Secretary of the student group. He got me started on the advocacy road to making a difference for other people. Not sure what road I would have taken if I had not spent that first year at ESU and met Duane.”

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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.