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

Webinar: How ACA Repeal and Medicaid Reform Will Impact People with Disabilities And What You Can Do!

Join national and state-level disability advocates for a webinar focused on one of the most pressing issues facing people with disabilities: Congressional effort to repeal the Affordable Care Act (ACA) and convert federal Medicaid funding into block grants.

Advocates based in Washington, DC will provide a report on what they are observing on Capitol Hill, and discuss what will happen next. Advocates based in various states will discuss their work to educate lawmakers and grassroots people about the importance of these healthcare programs for people with disabilities. The ADA Legacy Project’s DisBeat will provide advice on collecting personal healthcare stories from people with disabilities and how to build a guerilla marketing campaign to call attention to our issues. There will be an opportunity to ask questions.

Time: Tuesday, January 17, 2017; 3:30-5:00 p.m. Eastern (2:30-4:00 p.m. Central; 1:30-3:00 p.m. Mountain; 12:30-2:00 p.m. Pacific; 11:30 am-1:00 p.m. Alaska; 10:30 am-12:00 Noon Hawaii)

  • National speakers: Lindsay Baran, National Council on Independent Living (others TBD)
  • State-level speakers: Florida, Massachusetts, Texas (invited)
  • Media: The ADA Legacy Project’s DisBeat

You will not want to miss this! Those across the states interested in healthcare for people with disabilities will want to join in. We can and will galvanize disability electoral power as we head into a new Administration by being informed and empowered. Join your brothers and sisters from across the nation.  [Read more…]

Join NCIL’s Parents with Disabilities Rights Task Force!

The National Council on Disability report, “Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children,” has outlined 20 findings and 50 recommendations on removing discriminatory barriers to raising families as people with disabilities from a range of federal agencies – everything from HUD to the entire family law system.

This in-depth report concludes that, “the legal system is not protecting the rights of parents with disabilities and their children,” and that, “fully two-thirds of dependency statutes allow the court to reach the determination that a parent is unfit…on the basis of the parent’s disability.” This is an outrageous violation of the Americans with Disabilities Act that leaves in its wake a policy of destroying families and a legacy of trauma on both parents with disabilities, and their children.

This is why NCIL is renewing our efforts to recruit members for the NCIL Parents with Disabilities Rights Task Force. We encourage people to join the committee call on Jan 30th to learn more and to become in involved in ending this kind of discrimination. The Parents with Disabilities Advocacy Group will focus on implementing the many recommendations in the National Council on Disability report, most specifically the section on ensuring training for family law professionals and exploring federal legislation that will protect our families.  [Read more…]

Disability Representation in the Women’s March on Washington

On Saturday, January 21, there will be a Women’s March on Washington, which aims to send a message to all levels of government, including but not limited to the incoming Presidential Administration, that we stand together in solidarity and we expect elected leaders to act to protect the rights of women, their families, and their communities. If you are in the DC area, you can join the march, which begins at 10:00 a.m. on the corner of Independence Avenue and Third Street SW.

Across the nation, there are over 270 Sister Marches planned on the same day, and over 577,480 people are expected at these events and these numbers are growing daily. To find a march / rally near you, visit:

There are lots of ways advocates can become involved if you are not already. The first is reaching out to event leaders and making sure the event is accessible. Logistics, such as ensuring ASL interpreters are secured for the day; checking out the march / rally route and working with organizers to ensure the route of travel is accessible and working with volunteer teams to have them understand disability issues and have a plan if wheelchairs break down, or if someone needs assistance; making sure there are accessible portable toilets and accessible bathrooms nearby; ensuring that the staging area is accessible and encouraging that some of the presenters are people with disabilities and can talk about the issues women with disabilities are faced with.  [Read more…]

Office on Violence Against Women Announces Disability Grant Program Solicitation for FY 2017

Source: Center on Victimization and Safety, Vera Institute of Justice

This week the Office on Violence Against Women (OVW) released the solicitation for the Fiscal Year 2017 Training and Services to End Violence Against Women with Disabilities Grant Program.

People with disabilities and Deaf people experience significantly higher rates of domestic and sexual violence than people without disabilities. Despite these high rates, when survivors with disabilities reach out for help they often find that services in their communities are inaccessible to their disability or unresponsive to the violence in their lives. For over a decade the OVW has been issuing grants through the Disability Grant Program to help communities build their capacity to meet the unique needs of survivors with disabilities and Deaf survivors. Over sixty communities have participated in the grant and changed this reality for survivors with disabilities in their community.  [Read more…]

Call for Proposals: AIRS 2017 I&R Training and Education Conference

The Alliance of Information and Referral Systems (AIRS) has released the call for proposals for the 2017 Annual Information and Referral (I&R) Training and Education Conference. The conference is being held in Tampa, Florida, with pre-conference intensives on May 21 and the regular conference May 22-24. AIRS is seeking workshops addressing the breadth of I&R service delivery.

The Aging and Disability conference track offers a great opportunity to share developments and effective practices in serving older adults and persons with disabilities with I&R colleagues across the country. This track is coordinated by NASUAD’s I&R Support Center, which strongly encourages aging and disability I&R agencies to review the call for proposals and consider a submission. See past topics.

View the current call for proposals. Topics such as family caregiving, mental health and substance abuse, disability across the lifespan, social determinants of health, cross-sector partnerships and collaboration (including ADRC and 2-1-1 partnerships), business acumen, partnering with health care entities, No Wrong Door system initiatives, ADRC funding and sustainability, use of new technologies in I&R, transportation, housing, and data collection and quality assurance are all examples of topics of interest in aging and disability I&R.  [Read more…]

Action Alert: Save Disability Rights Provisions in the Affordable Care Act!

Congress is on a fast track to repeal the Affordable Care Act (ACA). There are many, many advocates fighting to preserve the insurance provisions of the ACA – also known as Obamacare, but virtually no one is talking about the disability-specific aspects of the law. Here are four important provisions in the ACA that are critical for the disability community:

  • The ACA prohibited discrimination against people with pre-existing conditions by insurance companies.
  • The ACA extended Money Follows the Person, a Republican New Freedom initiative that is liberating thousands of disabled people from institutions, but that program is ending because of Congressional inaction.
  • The ACA established the Community First Choice Option, a Medicaid option that incentivizes states to free our people from nursing facilities and institutions.
  • The ACA authorized accessibility standards for Diagnostic Medical Equipment so people with disabilities could get access to preventative healthcare screenings and appropriate diagnostic testing.

For more information, please see NCIL’s Call to Action: Saving the Affordable Care Act and Fighting Medicaid Block Grants.

Congress is acting swiftly to repeal the ACA, but most members of Congress have no idea that these provisions were even included in the law! We cannot rely on other groups to defend our interests and issues. The disability community itself must act now!

Take Action

  1. Use this quick online action form to tell Congress to preserve these disability-specific provisions of the Affordable Care Act.
  2. Promote and share the link above to get as many other people as possible to take action on this issue!
  3. Sign on your organization to this letter urging Congress to save these disability-specific provisions in the ACA.
  4. Send your own letter to Congressional Leadership and your Senators and Representatives. Use the text from the sign-on letter to make this easy, and send us a copy at!


Whether you like him or not, President-elect Trump demonstrated the power of Twitter. U.S. policy is now being made in 140 characters or less. We must leverage our voices and our social media networks to spread the word. Although Congressional leadership doesn’t follow Twitter closely and respond, the President-elect does. If we can’t get through to Congress, we should ask @realDonaldTrump to help us make the case.

  • #ACA included Money Follows the Person- Republican initiative giving #NewFreedom to #disabled. @realDonaldTrump #ReadB4Repeal#CripTheVote
  • #ACA included Community First Choice- giving #Liberty to #disabled. @realDonaldTrump #ReadB4Repeal#CripTheVote
  • #Liberty of #Disabled shouldn’t be culture war collateral damage. @realDonaldTrump help get Congress to #ReadB4Repeal #CripTheVote
  • #ACA gave #Disabled women access to mammography. @realDonaldTrump help get Congress to #ReadB4Repeal #CripTheVote
  • #ACA stops discrimination against #disabled by insurance. @realDonaldTrump help get Congress to #ReadB4Repeal #CripTheVote
  • .@realDonaldTrump #ACA’s Community First Choice Option let Disabled people Stay in our homes! #ReadB4Repeal #CripTheVote
  • .@realDonaldTrump #ACA included the #GOP created Money Follows the Person Initiative giving Disabled ppl Freedom. #ReadB4Repeal #CripTheVote

Additional Advocacy Tools

We know it is easier when you have a toolkit to work with. We have crafted a press release you can use and we are finalizing some talking points to reference when the press calls you. We will add additional tools as this campaign continues.

Action Alert: Ask Your Senator to Oppose the Nomination of Senator Sessions as Attorney General

President-Elect Trump recently nominated Senator Jeff Sessions for the position of Attorney General, a role that would put him at the head of the Department of Justice. The DOJ is central to protecting the rights of persons with disabilities and enforcing laws such as the ADA, IDEA, and the Help America Vote Act. NCIL opposes this nomination due to Senator Sessions’ concerning record on opposing disability rights. Among some of our concerns:

  • As Attorney General of Alabama, Sessions fought against rulings that improved educational opportunities and equality for students with disabilities. As U.S. Senator, he has criticized IDEA, which requires schools to provide special education for students with disabilities, as “hurting public education” and “the single most irritating problem for teachers throughout America today”. Sessions is a proponent of segregation of students with disabilities.
  • As Attorney General of Alabama, Sessions “was a key figure in fighting against two landmark settlements that committed the state to community integration and independence for children and adults with disabilities”. R.C. v. Hornsby led to community-based services being placed at the head of the child welfare system. Wyatt v. Stickney established significant reforms, including transitioning individuals from institutional to community settings.
  • As U.S. Senator, Sessions has called the Voting Rights Act, which protects the voting rights of racial minorities and voters with disabilities, “an intrusive piece of legislation,” and in the last presidential election, Sessions “promoted a false narrative that President Obama had encouraged undocumented immigrants to illegally vote in the presidential election”.
  • Senator Sessions has favored criminal justice reform measures that focus on punitive measures as opposed to prevention, such as the Violent and Repeat Juvenile Offender Accountability and Rehabilitation Act of 1999.
  • In 2009, Senator Sessions voted against the Matthew Shepard and James Byrd, Jr. Hate Crimes Prevention Act, “which expanded the federal hate crime law to include crimes motivated by the victim’s actual or perceived gender, sexual orientation, or disability”.
  • Senator Sessions has not answered questions about gaps in his voting records in a questionnaire sent to the Senate Judiciary Committee.

NCIL is asking for your help in opposing Senator Sessions’ nomination. Please contact your Senators (877-959-6082). Ask them to oppose Sessions’ nomination and educate them on some of the concerning aspects of Senator Sessions’ disability rights record. Senator Sessions’ confirmation hearings are set for January 10 and 11, so it is of critical importance that we act quickly to educate Senators on Sessions’ record on disability rights and ask them to oppose his nomination.

If you have any questions, contact Sarah Blahovec, NCIL Disability Vote Organizer, at 724-309-5182 or

NCIL Statement on Chicago Disability Hate Crime

On Tuesday, January 3rd, a video was streamed on Facebook Live depicting a young man with cognitive disabilities being brutally beaten by a group of his peers.

It is not known for how long the young man was held, but during that time, documented by the video, the victim was tied up with his mouth taped shut, backed into a corner, repeatedly kicked and hit, and his scalp and clothes were cut. The video shows the captors laughing and shouting insults centering on the victim’s disability and race while inflicting this torture. It was later confirmed that the victim knew at least one of his captors, as they were classmates.

This is a hate crime on the basis of disability, and has now been formally recognized as such under Illinois law. We condemn this and any kind of violence, and applaud the swift action of the Chicago police department in bringing the perpetrators to justice. We urge other law enforcement agencies to follow the Chicago police department’s example regarding incidents of hate and violence on the basis of disability.

The attackers were two men and two women, all black, and the victim was white. While we react against this incident, sadly, we also recognize that brutality against disabled people of color is not always met with the same level of (justified) outrage that this incident has provoked. Racial justice cannot be separated from disability justice, as racism and ableism are intertwined. At NCIL, we work towards intersectionality every day, and we encourage you to amplify the voices of those who experience any form of violence including disabled people of color.

This is a cruel act of violence against not only this young man, but the disability community. Hate crimes are intolerable, and yet happen with frequency to our community. According to the Bureau of Justice Statistics, people with disabilities are over twice as likely to be the victims of hate crimes, and are more likely to be victimized by someone they know than people without disabilities. The rates of serious violent victimization – rape, sexual assault, robbery, or aggravated assault – are more than three times higher for persons with disabilities than for persons without disabilities. President Obama’s comment on the Chicago attack, naming these “hate crimes of the despicable sort…” falls short of expressing our frustration, outrage, and fear regarding the situation. This incident shines a rare spotlight on the targeted violence and abuse felt by people with disabilities on a daily basis.

This is a terrible blow against this young man, not only physically but mentally, and NCIL wishes to offer support to him, his family and any others who experience such terrifying and unjust situations.

We encourage you to seek support in this time and practice self-care. Disability, mental health, and abuse are all serious matters. If you or someone you know may be suffering from abuse, please use the resources below. Additionally, feel free to share these with your community. At NCIL, we strive every day to create a world where everyone can live safely and independently in their communities.

Call to Action: Saving the Affordable Care Act and Fighting Medicaid Block Grants!

There are a lot of questions about the upcoming healthcare threats our community will be facing. We know that Congress wants to repeal the Affordable Care Act (ACA), and recent reports say that House Republicans are aiming to get a repeal bill on President-Elect Trump’s desk by February 20. We also know that there have been proposals to turn Medicaid into block grants or per capita caps. In this alert you can read more about what this all means, as well as NCIL’s strategy to fight against cuts to our coverage. Please make sure to read and act on the action items at the end of this message!

The Affordable Care Act

Block Granting Medicaid

Call to Action

NCIL logo - National Council on Independent LivingThe threats to the Affordable Care Act and Medicaid are very real, and the disability community is justifiably afraid. We must work together strategically to preserve access to as many of our needed supports and services as possible. While changes to Medicaid are likely forthcoming, it is clear that repealing the ACA is the Republican Congress’s top priority. Knowing that, our work must first focus on saving what we can.

Republican leaders have already expressed that they intend to preserve access to coverage for people with pre-existing conditions. While we cannot take this for granted, we can take some comfort in the fact that there has been a commitment to us on this issue. That said, we must continue to follow the conversation so we can hold Congress accountable.

On the other hand, there has been no public conversation in Congress regarding some of the other provisions that are vital to the disability community, including Money Follows the Person (MFP) and the Community First Choice Option (CFCO). These are two initiatives that are not partisan, and further, they do not have to be linked to the ACA to continue. In fact, MFP was initiated well before the ACA under the Bush administration, and CFCO was not included in the original ACA legislation and was only added because of the work of disability advocates. Both of these programs help people with disabilities transition from institutions to the community and receive the services and supports we need at home.

At this time, there are two things we’re asking of NCIL members:

First, ask your members of Congress to save Money Follows the Person and the Community First Choice Option. Please call or write your Representatives and Senators and tell them how important these two programs are to you and to the disability community! There will also soon be a sign-on letter circulating that you can use as a draft letter to send to Congress. We will forward you more details when the letter is finalized.

Second, we need your stories of how the ACA and Medicaid have helped you! We’ve received a request for stories from members of Congress who hope to salvage what they can of the ACA. Please share with us how the ACA, Medicaid, MFP, CFCO, or the Balancing Incentive Program (BIP) have helped you to live more independently as a person with a disability. You can send your stories to NCIL Policy Analyst Lindsay Baran at

As movement on these issues progress, you will be receiving more information and calls to action from NCIL.

Join Us January 26 for Medicaid Advocacy 101 Part IV: Exploring New Collaborations & Partnerships

January 26, 2017; 3:30 – 4:30 p.m. Eastern

Register online.

Cost: This webinar is free for NCIL members! Registration for non-members is $25.00.

Registration is limited to 95 spots. Sign up today!

Coalition building and collaborations remain a strong part of the policy and reform process; however, some of the strongest opportunities for advancement and innovation come from cross-sector partnerships. Join us as we examine how policy advocates, CILs, community organizations and health plans can work together to improve the systems serving individuals with disabilities.

Learning Objectives:

  • Hear about innovative partnerships developed to improve systems for individuals served by Medicaid programs
  • Identify strategies for building partnerships and pilots locally


  • Shari Coatney, Southeast Kansas Independent Living Resource Center
  • Krista Hayes, UnitedHealthcare Community Plan of Kansas

Medicaid Advocacy 101 Series

Exploring New Collaborations & Partnerships is the fourth in a four part webinar series designed for emerging leaders in Medicaid advocacy. We will look at the foundational elements of the Medicaid program and how states adjust and differ in their programmatic design. Presenters will include individuals with State, Federal, Health Plan and CIL experience. Participants will be enhance their ability to shape the Medicaid environment in their state by deepening their understanding of the Medicaid program, emerging policy, avenues for influence and opportunities for collaboration. This webinar series is offered through a joint project between National Council on Independent Living and United Healthcare.

Intended Audience: Emerging leaders in Medicaid policy, self-advocates, students and anyone interested in learning more about Medicaid policy