the advocacy monitor

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

Help Set NCIL’s Priorities: NCIL Legislative & Advocacy Survey to Be Released This Week!

Dear NCIL Members,

NCIL logo - National Council on Independent LivingI’m writing to let you know that later this week, you will be receiving a survey that will help determine the priorities of NCIL during the 116th Congress. We really need your help by taking the time to fill it out. Our work at NCIL is determined by our membership, and this is what sets us apart from other organizations. Your answers to the survey will directly impact our legislative and advocacy work moving forward.

Please take the time to fill out the survey and I look forward to reviewing these results.

In Solidarity,

Sarah Launderville
Vice President

CIL-NET Presents: A National Learning Collaborative on Housing at Centers for Independent Living

This Learning Collaborative is part of Our Homes, IL-NET’s series of trainings and resources on accessible, affordable, integrated housing for Centers for Independent Living (CILs) and Statewide Independent Living Councils (SILCs). The lack of accessible, affordable, integrated housing remains the biggest obstacle as CILs implement the new core services of transition and diversion. Expanding housing is a key component of the provision of CIL core services and successful outcomes for consumers.

Are you ready to amplify your housing efforts, but feel like you need some assistance to get there?

CIL-NET is offering a new National Learning Collaborative on Housing to support CILs that are ready to roll up their sleeves and build solutions to one of the most persistent barriers to independence for people with disabilities.

IL-NET Logo - CIL-NET + SILC-NETGoal of the Collaborative: To expand accessible, affordable, integrated housing options through the creation of innovative, replicable housing action plans at CILs across the country based on community needs and agency capacity.

What is a Learning Collaborative?

The National Learning Collaborative on Housing at Centers for Independent Living is much more than training. From March to October of 2019, our facilitators will work with a dedicated group of CILs to support one another as they plan programs, activities, and other innovations to expand affordable, accessible, integrated housing in their states and communities. Participation in the Learning Collaborative takes a very real commitment of time and resources. Participants in the collaborative will learn alongside and support one another. A successful collaborative requires commitment, teamwork, and follow-through. Therefore, we are asking interested individuals to apply to participate. A maximum of 12 CILs will be selected for participation with a maximum of two individuals per CIL.  [Read more…]

NCIL Statement on the Passing of President George H.W. Bush

The National Council on Independent Living mourns the passing of former President George H.W. Bush. He died on Friday, November 30, 2018, at the age of 94.

On July 26, 1990, President Bush signed the Americans with Disabilities Act, which solidified into law the civil rights of people with disabilities in the U.S. At the signing ceremony, the words he spoke became words often repeated in our community to symbolize the significance of the law’s passage: “Let the shameful wall of exclusion finally come tumbling down.” Read full remarks.

NCIL Executive Director Kelly Buckland said, “President Bush didn’t simply sign a historic piece of legislation. The ADA passed with strong, bipartisan support under – and in part because of – his strong, ongoing leadership.” In 2015, President Bush listed the ADA among his proudest achievements as President, saying, “It’s something I’m very proud of – perhaps proudest of when I was President.”

NCIL mourns the loss of President Bush, whose contributions and commitment to the civil rights of Americans with disabilities will not be forgotten.

After lying in state for two days at the Capitol Building, a funeral service will be held for President Bush in Washington today (Wednesday) at 11:00 a.m. Eastern at the National Cathedral. Today will be a national day of mourning and the federal government will be closed. After today’s funeral, he will be flown back to Texas and interred on Thursday. Details about both the DC and Texas services and ceremonies can be found on the official schedule (PDF). Several news networks will be covering the services Wednesday and Thursday, including PBS stations nationwide and C-SPAN online. We encourage you to attend these events and tune in remotely to show your gratitude for his signing of and commitment to the ADA and people with disabilities.

NPR Seeks Public Input on the ADA!

Tomorrow (Tuesday, December 4), National Public Radio’s (NPR) 1A radio show is doing a segment on the Americans with Disabilities Act (ADA). They are asking for input from the public – including information about what’s wrong with the law and what needs to be changed. We need to make sure they also hear from people with disabilities about the importance of the ADA and what’s right with the law! Share your stories about how the ADA has protected your rights or provided you greater access to your community. The law may not be perfect, but having seen repeated attempts in Congress to weaken the ADA, we need to keep fighting to protect it.

More information about the show, including times and information on how to tune in, can be found at Call in at: 855-236-1A1A (1212).


Deadline Extended: Apply for the NCIL Path to Empowerment Grants By Monday, December 10!

The Deadline to apply for this grant has been extended to Monday, December 10, 2018.

The link to the application form was incorrect in one of our earlier announcements. Our application links will always lead directly to a form. You should never have to login to complete anything. Please make sure to use the links below to access the application form.

NCIL is excited to announce that we have received continued funding from the Craig Neilsen Foundation for Path to Empowerment projects! NCIL is seeking five (5) to ten (10) Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), or Independent Living Associations that are interested in providing programs to enhance the quality of life for people with spinal cord injury (SCI).

Eligibility – Applicants must:

  • Be a current NCIL member;
  • Be a Center for Independent Living (CIL), Statewide Independent Living Council (SILC), or Independent Living Association; and,
  • Provide matching funds of at least 5% of the total funds requested from NCIL.

NCIL will provide funding ranging from $10,000 to $25,000 to support Independent Living; Rehabilitation; Employment; Assistive Technology; Arts, Sports, & Recreation; or Education programs. Examples include:

  • Independent Living – one-to-one or group IL skills training; one-to-one visits to people with SCI in rehab facilities, one-to-one assistance to individuals wanting to leave nursing homes for more independent living arrangements;
  • Rehabilitation – patient assistance funds to offset costs of rehab for individuals with SCI, educating newly injured individuals and their families on SCI;
  • Employment – assistance with resume and interview preparation, applying for jobs and learning how to handle disability issues or concerns during the interviewing, hiring and employment process;
  • Assistive technology – assisting consumers in identifying and acquiring necessary technology to enhance independence and quality of life;
  • Arts, Sports, & Recreation – programs that teach wheelchair sports, provide fitness, wellness and nutrition opportunities and exercise classes, visual, written, and performing arts classes, exhibitions, and performances for people with SCI;
  • Education – one-to-one or group tutoring, preparing newly injured students with SCI to return to school/university; GED classes for consumers.

NCIL will select the applicants that best demonstrate the capacity and resources necessary to make the greatest impact for consumers with SCI. All program applicants in each focus category must demonstrate the capacity to enhance quality of life for people with SCI. Additionally, applicants should document how they will fulfill the Neilsen Foundation evaluation criteria including impact, innovation, and relevance to the area of focus on traumatic and chronic spinal cord injury; feasibility based on documented experience, expertise, available resources, and organizational commitment; sustainability of proposed project or program; collaboration and demonstration of meaningful community partnerships including the avoidance of duplication of services and demonstration of shared community resources; and clear project evaluation methods. While applicants must communicate how their proposed activities will improve outcomes for consumers with SCI, NCIL acknowledges and appreciates that programs funded under this grant will serve consumers with all types of disabilities.

The application and project timeline is as follows:

  • November 7 2018: 2019 Path to Empowerment RFP opens
  • December 10, 2018: 2019 Path to Empowerment RFP closes
  • January 5, 2019: Grantees selected
  • January 15, 2019: Pass-through money distributed to Grantees
  • February 1, 2019: Grantee programs begin
  • October 30, 2019: Project ends
  • November 12, 2019: Grantee final reports due

To apply, interested parties must use the Application Form, which is available online.  We are also providing Word and plain text formats in case you want to look through the application or experience any access issues with the online form.

The application deadline is 11:59 PM EST, Monday, December 10, 2018.

Survey Invitation: The Birds and the Bees are for Everyone

Please consider participating in this important survey and sharing it with others you think may be interested.

Alie Kriofske Mainella is a doctoral student at the University of Wisconsin Madison. She is currently working on her dissertation, which is called “The Birds and the Bees are for Everyone: An examination of the impact of sexual health education for people with developmental disabilities on sexual self-concept and subjective well-being”. Alie is also a long-time sexual health educator for people with disabilities and her dissertation is focusing on people with spina bifida and cerebral palsy. The survey should take about 20-30 minutes to compete.

Take the survey[Read more…]

Submit Comments Today to Oppose the “Public Charge” Proposal

On October 10, 2018 the Trump Administration’s proposed “public charge” rule was published in the Federal Register. The proposal is extremely discriminatory against disabled immigrants, and we need to do all we can to stop it!

NCIL logo - National Council on Independent LivingThe public charge rule is used to prevent immigrants from entering the US or becoming legal permanent residents if they are likely to rely on certain public benefits. This proposal would significantly expand the benefits that can be taken into account to include non-emergency Medicaid, housing assistance, SNAP (food stamps), certain healthcare subsidies, and potentially the Children’s Health Insurance Program (CHIP) – things people with disabilities rely on often. It would also heavily weigh medical conditions, insurance, and anticipated medical costs in public charge determinations. This proposal is unquestionably discriminatory against immigrants with disabilities. It makes it clear that this administration only wants you if you’re healthy, nondisabled, and wealthy. You can learn more about the public charge rule in our previous alert.

If the rule is finalized as proposed, disabled immigrants will be far less likely to come to the US and less likely to be permitted to stay. Moreover, immigrants currently residing in the US will likely be even more afraid to use the benefits they need in fear of being denied a green card. The proposed policy would be devastating to immigrant families, and it would disproportionately impact people with disabilities.

Take Action!

The comment period closes on December 10, 2018 at 11:59 Eastern. We have drafted sample comments that you can personalize and submit. Please feel free to use them as – is or to change them as much as you’d like to reflect your own experiences and opinions.

NCIL’s draft comments are available online and in Word and plain text.

Comments may be submitted online through the Federal eRulemaking Portal (preferred) or by mail.

  • To submit comments online through the portal, visit (or go to and enter USCIS-2010-0012 in the search bar) and click on “Comment Now”. You can either type your comments into the comment box or upload a document.
  • To submit comments by mail, your comments must be postmarked by the comment submission deadline (December 10, 2018). Address your comments to: Samantha Deshommes, Chief, Regulatory Coordination Division, Office of Policy and Strategy, U.S. Citizenship and Immigration Services, Department of Homeland Security, 20 Massachusetts Avenue NW, Washington, DC 20529-2140. Please reference DHS Docket No. USCIS-2010-0012 in your correspondence.

NCIL Matters on #GivingTuesday

Recently, one of our donors was thanked for his gift to NCIL. His response? “NCIL matters, so I am happy to give.”

Giving Tuesday logo - #GivingTuesday with a heart icon replacing the ‘v’NCIL matters, now more than ever. In an era where the programs that help people with disabilities live full and rich lives in the community are constantly under attack, NCIL is the first line of defense. Our grassroots network allows us to quickly mobilize people to call, email, and tweet their Congressional representatives to remind them that people with disabilities have a voice in our own futures, and we are a force to be reckoned with. Our staff tackles big topics every day that have the potential to create positive change in the lives of people with disabilities, like voting rights, sexuality, and accessible transportation. We also support CILs, SILCs, and other organizations so that they can more effectively assist consumers with the nitty gritty issues that affect their day to day lives.

Today is #GivingTuesday, an international day of giving following Black Friday and Cyber Monday. Your gift will support people with disabilities all over the nation to live independent lives. Here are some ways you can give to NCIL:

  • Online directly through our online donation form
  • Shop on AmazonSmile with NCIL as your selected charity and Amazon will give a portion of your purchase to NCIL
  • Give to a Facebook fundraiser for NCIL, like this Facebook fundraiser created by board member Jessica Jimenez. And with Facebook’s new recurring donation feature, you can support NCIL all year round with just a few clicks.

Don’t forget to post on social media that you donated to NCIL and encourage your friends to do the same! Include the hashtag #GivingTuesday. Show the world that NCIL matters.

Take Action for MFP and DIA During the Recess!

Members of Congress are home on recess until Monday, November 26. With the remaining weeks of this Congressional session running low, this is our key opportunity to talk with them about our priorities for the end of 2018! Please talk with your Senators and Representative about the EMPOWER Care Act and the Disability Integration Act this week!

NCIL logo - National Council on Independent LivingTake Action!

EMPOWER Care Act: Urge your Senators and Representative to pass the EMPOWER Care Act (S. 2227 and H.R. 5306) during the lame duck session! The EMPOWER Care Act is a bipartisan bill that would reauthorize the Money Follows the Person (MFP) demonstration program, which has freed over 88,000 disabled people from institutions. MFP expired in 2016, so we need action NOW. Urge your Members of Congress to support this important bill – it’s time to reauthorize MFP and pass the EMPOWER Care Act!

Disability Integration Act (DIA): If your Senators or Representative aren’t cosponsoring the Disability Integration Act (S. 910 and H.R. 2472) yet, urge them to do so over the lame duck session! The DIA is a bipartisan bill that would help disabled people stay in our homes and communities, and our members of Congress need to hear how important this bill is to their disabled constituents. If they aren’t cosponsoring the bill, what are they waiting for? We need ALL our Members of Congress to support the DIA! If you get in touch with your Senators or Representative about DIA, please email an update to

Free Webinar – Improve Quality: Improve Relationships

How one organization developed clinical systems to improve outcomes for individuals and relationships with payers.

NASUAD Logo - National Association of States United for Aging and DisabilitiesUnited Disabilities Services provides direct services to over 5000 clients annually with a network of programs that are designed to foster independence, self-sufficiency, and community integration. Their Home and Community Based (HCBS) service coordination department provides services to approximately 2,000 clients annually and recently achieved NCQA Case Management LTSS Accreditation. The HCBS department is dedicated to advancing the abilities that empower individuals to live independently and safely at home. They are guided by a mission to provide quality services in the home and community that enhance the independence and enrich the lives of seniors and individuals with disabilities. The highest priority amongst those served through the HCBS department is to remain in their home. To facilitate this they developed a Quality Management Program that incorporates multiple measures to reduce preventable hospitalizations by identifying and mitigating high risk factors. This work has driven their business practice and created synergy with other professionals in their community.  [Read more…]