the advocacy monitor

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

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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Participants Needed: 2019 National Survey on Health and Disability

The Collaborative on Health Reform and Independent Living wants to know how your access to health care and insurance may be affecting your life.

The NIDILRR-funded Collaborative on Health Reform and Independent Living (CHRIL) is looking for adults with disabilities to complete an online survey about health insurance and health care services. Whether you have private insurance, insurance from an employer, TRICARE, Medicaid, Medicare or no insurance right now please complete the survey. 

  • Adults, 18 and over, with any type of disability, mental or physical health condition are encouraged to participate
  • The survey should take about 20 minutes to complete
  • Responses are anonymous

Complete the survey (

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Sign On To a Joint Statement on Gun Violence Prevention Policy and Mental Health

NCIL has been working with a group of national disability rights and mental health organizations to push back against the rhetoric that people with psychiatric diagnoses are the cause of gun violence, and to fight against gun violence prevention proposals that discriminate against disabled people. With this rhetoric coming from many directions, and with the threat of new proposals and legislation remaining constant, it is more important than ever that we work together and speak out.

Decades of research has shown us what we already know: people with psychiatric diagnoses are no more likely to be violent than people without. And, people with psychiatric diagnoses are far more likely to be victims than perpetrators of violence. It is unacceptable to deprive a group of people their rights based solely on diagnosis and unfounded fear, which is what many – including the President – are proposing to do.

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Reminder: Share Your Thoughts on NCIL’s Sex Ed for People with I/DD Project!

Last week NCIL introduced our Sex Ed for People with I/DD videos and discussion guide. We’re so happy that lots of people like the project.  We want you to fill out our evaluation form. This will tell us if the project is helping people.

If the form isn’t accessible to you, please email Cara Liebowitz at

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.


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

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!

Amicus Brief Challenging Administration’s Rescission of DACA

NCIL joined a coalition of 45 civil rights and social justice organizations, led by the Lawyers’ Committee for Civil Rights Under Law, in filing an amicus brief before the Supreme Court urging that the Department of Homeland Security’s rescission of the DACA (Deferred Action for Childhood Arrivals) program is unlawful. The brief was submitted Friday morning.

In late 2017, the Trump Administration abruptly terminated the DACA program. Legal challenges have kept the program in place, and it has now made its way to the Supreme Court, where a hearing is expected on November 12, 2019. 

You can read more information about the amicus brief in the Leadership Conference on Civil and Human Rights’ press release.

Donate Now to Close the Gap of People with Disabilities in Elected Office

A new study released by Rutgers University reveals that only 10.3 percent of elected officials have disabilities, compared with a rate of 15.7 percent in the overall studied population. That leaves a gap of over 5 percent between where elected representation of people with disabilities is and where we need it to be.

We want to close that gap. When our governments – large or small – don’t reflect the diversity of the communities they serve, democracy fails. Our governments need to be truly by the people, for the people – and that includes people with disabilities.

But we can’t close the gap without you. NCIL’s Elevate program is the first and only non-partisan program that trains people with disabilities to run for elected office. Our pilot program this past summer was a great success. Now we need your help to keep it going. Your support will help us run more webinars, hire more expert consultants, and reach more people with disabilities interested in running for office. Together, we can give people with disabilities the tools they need to run for office, win the race, and close the disability representation gap in elected office.

We can’t make change if we don’t have a seat at the table. Donate today to close the gap in political leadership for people with disabilities.

For Immediate Release: One in Ten Elected Officials Has a Disability

October 3, 2019

Contact: Sarah Blahovec, 571-777-8531,

New Report Finds Gap in Political Representation of People with Disabilities

Washington, D.C. – According to a new study by Professors Lisa Schur and Douglas Kruse, co-directors of the Program for Disability Research in the Rutgers School of Management and Labor Relations, an estimated 10.3 percent of elected officials serving in federal, state, and local government have disabilities. That is more than five percentage points lower than the overall disability rate in the adult population studied in this data.

This report marks the first quantitative study of representation of people with disabilities in elected office. Schur and Kruse analyzed 2013-17 data from the U.S. Census Bureau’s American Community Survey, which measures disability on four kinds of impairment (hearing, visual, mobility, cognitive) and difficulty with basic activities inside or outside the home. The researchers’ key findings include:

  • 15.7 percent of adults and 10.3 percent of elected officials have a disability. That is a gap of 5.4 percentage points, suggesting that people with disabilities are underrepresented in elected positions.
  • 12 percent of elected officials in local government have a disability, compared to 6.9 percent at the state level and 6.3 percent at the federal level.
  • The rate of disability is slightly lower among women elected officials at 8.3 percent, than among men elected officials at 11.4 percent.
  • The vast majority of elected officials with disabilities are white, non-Hispanic men.
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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 Introduces “Sex Ed for Individuals with I/DD”

The National Council on Independent Living’s new project helps people with intellectual and developmental disabilities (I/DD) learn about sex.

Some of the things we talk about in this project are:

  • What sex is
  • What gender is
  • What a healthy relationship looks like
  • How someone can get pregnant
  • How to protect yourself against sexually transmitted diseases and infections

This project has two parts.

You can read the guide before or after you watch the videos.

The videos and the guide both have the same information. Some people might find it easier to watch the videos. Some people might find it easier to read the guide. Some people might want to do both.

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