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

Annual Conference Speakers Confirmed!

Mobilize - Resistance through Action: 2018 Annual Conference on Independent Living. Graphic features an arrow striking a heart over the letters "IL" and a target that replaces the "o" in "Mobilize"Keynote Speaker: Rebecca Vallas

We are happy to announce the confirmation of Keynote Speaker Rebecca Vallas, who will deliver an address during the Opening Plenary, which takes place 9:00-10:00 a.m. on Monday, July 23. This event will kick off a week of movement-building and mobilization. Read Rebecca’s biography.

ILA Update

The 2018 Annual Conference on Independent Living will feature an ILA Update on Thursday, July 26, 4:15-5:00 p.m. Administration for Community Living (ACL) and Independent Living Administration (ILA) leadership will provide an update on NCIL’s priorities and concerns for oversight of the Independent Living Program, as well as other current affairs at ACL and ILA. An opportunity for questions and answers will be provided.

Confirmed Rally Speakers:

  • Senator Bob Casey
  • Representative Gene Green
  • Representative Colleen Hanabusa
  • Senator Maggie Hassan
  • Representative Jared Huffman
  • Representative Joe Kennedy
  • Representative Ro Khanna
  • Representative Jim Langevin
  • Representative Seth Moulton
  • House Minority Leader Nancy Pelosi
  • Senate Minority Leader Chuck Schumer
  • Representative Glenn ‘GT’ Thompson
  • Representative Dina Titus
  • Representative Juan Vargas
  • Senator Chris Van Hollen

Join Us!

Online registration for the 2018 Annual Conference on Independent Living closes at midnight on Friday, July 13. Onsite registration is also available. Please note that onsite registration fees differ from standard registration fees and plan accordingly. Plan to join us for the March for Disability Rights and Rally on Capitol Hill – no registration is required!

NCIL Mourns the Passing of Jamey George

Dear friends and colleagues,

NCIL logo - National Council on Independent LivingIt is with a heavy heart that we write to inform you of the passing of Jamey George. Jamey was the founder and longtime Executive Director of the Freedom Center for Independent Living in Maryland, a dedicated two-time member of NCIL’s Governing Board, and a past member of the Maryland SILC. Jamey passed away unexpectedly on Sunday, July 8, 2018. Read Jamey’s complete obituary.

Sarah Sorenson, fellow Marylander and Executive Director of Independence Now, said of Jamey: “Jamey believed in and fought for independent living for absolutely everyone. She was incredibly proud of founding and directing The Freedom Center, a vibrant and active CIL in Central Maryland. She felt CILs could do anything and do it better than anyone else! She was solidly loyal to this movement. At many meetings, when the chips were down, I was proud she was on our side. This is such a loss for Maryland and the Independent Living movement at large.”  [Read more…]

2018 Annual Conference: Pre-Event Registration Ends This Friday, July 13!

Mobilize - Resistance through Action: 2018 Annual Conference on Independent Living. Graphic features an arrow striking a heart over the letters "IL" and a target that replaces the "o" in "Mobilize"All pre-event and online registration for NCIL’s 2018 Annual Conference on Independent Living closes this week. All pre-event registrations must be received by Friday, July 13 at 12:00 midnight, Eastern Time.

Individuals may still register onsite, but please note that onsite registration fees differ from standard registration fees and plan accordingly.  [Read more…]

Disability Integration Act (DIA) Update

First, we have THREE new cosponsors in the House! Our new cosponsors are:

  • Vicente Gonzalez (D-TX)
  • Cheri Bustos (D-IL)
  • Nanette Diaz Barragan (D-CA)


NCIL logo - National Council on Independent LivingWe are approaching a critical time for our legislation with the NCIL Annual Conference, Day on the Hill, and upcoming midterm elections. To help get you ready, here are some “DIA Tools You Can Use”.

Need general information about DIA?

Learn about the bill at

Contacting your Member of Congress?

Here are some resources for meetings and other contacts with legislators. We have fact sheets and comprehensive Hill packets that you can email or print and give them. While DIA is bipartisan, in our discussions with legislators many of the questions we have received about the legislation have differed along party lines. In order to better help you address your legislator’s questions, we have developed materials specific to each party, so be sure to use the right ones.  [Read more…]

NCIL Actions in Response to ILA / ACL Reductions in Part C Funds to CILs

As you know, many Centers for Independent Living (CILs) saw a reduction in funds in FY 2016 and 2017, which the Independent Living Administration (ILA) explained as being necessary to:

  • 2016: help CILs who missed the deadline to draw down the remainder of their American Recovery and Reinvestment Act (ARRA) funds due to miscommunication from the Rehabilitation Services Administration (RSA); and
  • 2017: help support “unaccompanied minors” coming into the country through an “Administrative Transfer” they claim the Secretary has the authority to impose.

NCIL logo - National Council on Independent LivingNCIL found both these actions unacceptable and decided to use the Freedom of Information Act (FOIA) to get information on the details of how Part C funds withheld from CILs were actually used and how they determined where cuts to CILs were made. Working with our attorneys, (Brown, Goldstein & Levy), NCIL sent a very detailed FOIA request to the Freedom of Information Act Officer at the Administration for Community Living (ACL).

Our attorney carefully analyzed all the information received and sent a detailed letter regarding that analysis and potential actions to be taken by NCIL, which included:

  • Prevail on a friendly member of Congress to ask the Government Accountability Office (GAO) for a legal opinion on the transfer of Part C funds to other Health and Human Services (HHS) programs in FY 2017 (and any others in prior years)
  • Sue for declaratory and injunctive relief regarding the transfer of Part C funds in FY 2017
  • Follow-up with ACL on deductions from Part C funds in FY 2017 for “Peer Review”, “ACL Grants System Cost”, and “Other Admin Costs”
  • Sue the Department of Education and ACL to seek redress for any illegal budgetary actions
  • Ask ACL to adjust their budget records regarding a reporting or clerical error
  • Ask ACL to petition Congress to pass legislation specifically exempting a given Part C appropriation from certain appropriations rules

The NCIL Rehabilitation Act / IL Funding Subcommittee carefully reviewed all these options. We also discussed the recommendation made by Appropriations staff that NCIL should work with ACL to prepare report language to prevent such transfers of Part C funds.  [Read more…]

Integrating Disability into Emergency Management – A Blueprint to Saving Lives in the Community

The NCIL Emergency Preparedness Subcommittee is honored to present at the 2018 Annual Conference on Independent Living. Our Pre-Conference session will be held from 2:00-3:30 p.m. on Sunday, July 22.

2017 was unprecedented in the number and severity of disasters in our country. The disability community was disproportionately impacted because we, and local and state emergency managers and society in general, have not acted upon the lessons we have observed from previous disasters by implementing practices, policies, and procedures to better prepare our response. Natural disasters are more intense, and human-caused disasters more frequent. If people with disabilities are to survive these disasters with less damage to us and our community, we must take action now! To paraphrase Justin Dart, “we must get involved as if our lives depended on it.” The NCIL Emergency Preparedness Subcommittee will discuss promising practices regarding developing strategies to integrate disability into emergency management in your community. In preparation for our pre-conference session, we encourage everyone to read:

Getting It Wrong: An Indictment with a Blueprint for Getting It Right

Disability Rights, Obligations and Responsibilities Before, During and After Disasters 
[Read more…]

Gearing Up for the 2018 Midterms: Ballot Measures and Nonprofits

Do you know what will be on your ballot when you go to vote in November? It’s very likely that you’re prepared to vote for somebody to represent you in a legislative body on the local, state, or national level, like a member of the House of Representatives. But while you might be voting for one candidate or another, you might have something else to vote on show up on your ballot, something that doesn’t involve choosing a candidate to represent your interests. Many states have voters decide on ballot measures, which according to Bolder Advocacy, “initiate constitutional or legislative reform by proposing, placing on the ballot, and voting on statutes or constitutional amendments.” In 24 states, citizens may have the opportunity to vote directly on important policy issues, often including issues that impact people with disabilities, such as housing and transportation.

NCIL logo - National Council on Independent LivingOne high-profile ballot measure in the 2018 Midterms is Florida Ballot Amendment Four, the Voting Rights Restoration for Felons Initiative. This amendment reads: “This amendment restores the voting rights of Floridians with felony convictions after they complete all terms of their sentence including parole or probation. The amendment would not apply to those convicted of murder or sexual offenses, who would continue to be permanently barred from voting unless the Governor and Cabinet vote to restore their voting rights on a case by case basis.” Florida is only one of four states with a lifetime ban on voting for people with prior felony convictions, and this disenfranchises 1.4 million Florida voters. Higher numbers of people with disabilities and people of color are incarcerated, making this ballot amendment a disability rights and civil rights issue. NCIL supports this amendment, as it restores the responsibility of civic engagement and ensures equal access for Florida citizens. You can learn more at Florida Second Chances[Read more…]

TNCs are Great, Unless You’re in a Wheelchair

Scott M. Crawford, Ph.D., Accessible Transportation Advocate

While watching the evening news, I couldn’t help but notice a highly polished advertisement from UBER’s CEO Dara Khosrowshahi called “Moving Forward”. In the sixty-second piece, Mr. Khosrowshahi says that his “…priority has been to listen to you, to cities and communities, and to my own employees.” He goes on to say that he’s focusing on changing the “culture” of the corporation and that “One of our core values as a company is to always do the right thing, and if there are times when we fall short, we commit to being open, taking responsibility for the problem, and fixing it.

NCIL logo - National Council on Independent LivingReally?

As a person living with multiple sclerosis in Jackson, Mississippi, and needing a power wheelchair for mobility, I can attest that UBER is not listening to me or my colleagues needing accessible vehicles. Historically, Transportation Network Companies (TNCs, or Ride-Hailing Services) pay lip-service to the notion by having an option like UBER WAV, but it is available in only a small number of cities and does not provide anything like the reliable service our able-bodied peers enjoy. It isn’t available at all here in Jackson.

Worse, in many states, TNCs have preempted local authority to enforce equal service. In 2016, the Mississippi Legislature passed just such a law with only the vague assurance that they must “…comply with all the applicable laws regarding nondiscrimination…”. There is nothing explicitly calling for wheelchair-accessible service that is at all equivalent to that provided to everyone else (§37.105).  [Read more…]

California, North Carolina, New Jersey, and New York: Paid Family and Medical Leave and Disability Study

Columbia University and The Arc are doing a study on paid family and medical leave with people affected by disabilities and need your help. For the study, they’d like to interview workers with disabilities and those who provide support to a friend or family member with a disability in California, New Jersey, New York, and North Carolina. They plan to conduct remote, one-on-one interviews by phone, web conference, or email to look at how paid family and medical leave programs can work better for them.

Can you help us recruit people who:

  1. Work in California, New Jersey, New York, or North Carolina or have worked in these states in the past 2 years, AND
  2. Have a disability OR provide support to a friend or a family member with a disability?

Interested people can call 929-900-5398 or email with ‘The Arc’ in the subject line.

Anyone who is eligible and completes an interview will receive a $20 gift card.  [Read more…]

New Fact Sheets Explain Laws That Protect People with Disabilities

Staff at the Research and Training Center on Promoting Interventions for Community Living (RTC/PICL) has created six new fact sheets to inform people with disabilities about their rights under U.S. laws. They are a few of the resources offered to participants in the RTC/PICL’s “Out and About” intervention, which assists consumers in setting community participation goals and addressing barriers to participation. Each fact sheet includes one or two scenarios that illustrate how understanding disability legislation enables people with disabilities to advocate for change. An additional fact sheet offers information on how to build a support network.