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

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…]

Ask Your Members of Congress to Reject White Nationalism

On Election Day, just weeks after hate crimes in Kentucky and Pittsburgh rocked the nation, the majority of American people voted to change the direction of this country, away from the hate and bigotry that have overtaken our nation as the threat of white nationalism has grown.

Today, NCIL is joining our friends at Bend the Arc: Jewish Action in launching a new campaign to ask every member of the new Congress to go on the record to reject white nationalism and recognize its threat to our communities and our democracy.

Can you help us launch in a big way? It’s going to take all of us to get this demand into the hands of as many members of Congress as possible before they are sworn in on January 3rd.

Go to right now to find your representatives and ask them to sign on.  [Read more…]

Organizers Forum: Disability Rights and Emergency Management – Getting It Right Before, During, and After Disasters

NDLA Logo - National Disability Leadership Alliance - Nothing About Us Without UsIn the wake of hurricanes in the south and on the east coast, and now huge fires raging in California, learn what is happening in the field of emergency management and disability rights. What should we as disability organizers do to improve things for disabled people in areas hit by disasters? What policies or practices should we be fighting for?  [Read more…]

GAO Requests Information from NCIL on Medicaid Eligibility

In 2011, the National Council on Independent Living joined a coalition of other groups in commenting on Centers for Medicare & Medicaid Services (CMS) rules related to implementing eligibility determinations under the Patient Protection and Affordable Care Act (PPACA). The comments related to concerns that people with disabilities might lose access to home and community based services, Medicaid Buy-In programs, and other long-term services and supports if they were determined eligible for a “new adult” group created as part of Medicaid expansion.

Although CMS addressed these comments in their final regulation, the Government Accountability Office (GAO) is interested in learning more about how states are implementing this guidance. The GAO is interested in learning from NCIL members who have experience assisting individuals to apply for Medicaid before and after implementation of PPACA, or general knowledge of this process, specifically as it relates to individuals who could benefit from home and community based services waivers and Medicaid Buy-In programs.  [Read more…]

Reminder: Share Your Experiences with Medicare’s In Home Rule with NCIL

Have You Had Problems with Medicare’s ‘In Home Rule’?

The Centers for Medicare & Medicaid Services’ (CMS) ‘In Home Rule’ restricts Medicare coverage of mobility assistive equipment (wheelchairs, walkers, scooters, and other mobility devices) to only those needed for assistance with Mobility-Related Activities of Daily Living (MRADLs) in the home. MRADLs include things like feeding, grooming, bathing, etc. Medicare does not consider someone’s needs outside of the home when determining which assistive device to cover.

NCIL has been asked to provide examples of people who have experienced barriers because of the In Home Rule. If you have had difficulty getting the appropriate wheelchair or assistive device, been denied a needed device altogether, or if you are not able to use your wheelchair or other assistive device in the settings you need because of this rule, we want to hear from you! Please contact and share how the In Home Rule has impacted your life.

NCIL Queer Caucus Condemns Trump Administration’s Call to Erase Transgender Identity

The NCIL Queer caucus condemns the Presidential Administration’s call to erase transgender identity from being recognized by the United States government. Through a unilateral set of policies targeting gender recognition, the transgender community will be put at even greater risk. Obama-era protections will be no more.

The transgender community already faces high unemployment, poverty, intimate partner violence, violence from police, and housing discrimination. The government recognition of gender identity had become a small step toward normalcy for many trans citizens. The ability to change gender markers — gender as identified on government documents — is not only a means of personal gender affirmation, but a label legitimizing gender. Bringing an I.D. to the bartender, using a public toilet, or getting on an airplane is no longer Russian Roulette for outing one’s self. Reports show that outing is a very dangerous act in a world still wrestling with the concept of trans identity. 27 transgender individuals have been murdered this year– many of them women of color. Gender markers are added protection against violence.

The NCIL Queer Caucus condemns the silence of the medical community on the issues of gender identity. Scientists have been the biggest ally to confirming that chromosomes are not the only definition of sex in humans. Despite evidence confirming gender identity, the scientific community is being silent on the attacks on the transgender community. The valuable information they provide is key to forming comprehensive and realistic policy around the issue.

22% of the transgender community identifies as having a disability compared to the general population of around 6%. Access to medical care, equal treatment under the law, access to jobs, housing, and safety are all concerns connecting the disability and transgender community.

Become a member of the NCIL Queer Caucus to help us organize and support the LGBTQ community, because we will most likely continue to see attacks on our population for the next several years. Be the change you want to see in the world! Learn about NCIL’s committees and caucuses and join today.