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

A Message from the National I&R Support Center: AIRS Annual I&R Conference Call for Proposals

Dear Aging and Disability I&R Professionals, 

The Alliance of Information and Referral Systems (AIRS) has released the call for proposals for the 2020 Annual Information and Referral (I&R) Training and Education Conference. The annual I&R conference is being held in Grand Rapids, Michigan, June 7-10, 2020. AIRS is seeking workshops addressing the breadth of I&R service delivery.  

The Aging and Disability conference track offers a unique opportunity to share developments and effective practices in serving older adults, persons with disabilities, and caregivers with I&R colleagues across the country. This track is coordinated by ADvancing States’ I&R Support Center, which strongly encourages aging and disability I&R agencies of all types to review the call for proposals and consider a submission.

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Information Alert: Spending Package Passed Congress

Congress has passed a spending package to fund the federal government for the remainder of Fiscal Year 2020 (FY20). Today, December 20, was the day the current Continuing Resolution (CR) was set to expire.

The spending package level funds the Independent Living program at $116,183,000. While level funding is far from what we need, we are very happy that Congress rejected the President’s proposal to cut the Independent Living program by nearly $8 million.

The package also include a 5-month reauthorization (and funding) for Money Follows the Person (MFP), and Spousal Impoverishment protections. While we have been hoping for permanent reauthorization, we will continue pushing toward that in 2020!

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NCIL Statement on the Fifth Circuit Court’s Ruling in Texas v. United States

The National Council on Independent Living (NCIL) is deeply concerned by Monday’s ruling from the Fifth Circuit Court of Appeals in Texas vs. United States. The court ruled that the individual mandate of the Affordable Care Act (ACA) is unconstitutional and sent the case back to the lower court to decide whether the remainder of the ACA can remain intact without it. Read the ruling (PDF). However, the district judge at the lower court has already ruled the entire law is unconstitutional, and this same judge now has the power to determine the fate of the ACA. 

The Court‘s decision puts the health care of millions of people in jeopardy. There is no question that repealing the ACA would have devastating consequences, and it would disproportionately hurt disabled people. Because of the ACA, insurers cannot discriminate against people with pre-existing conditions by denying coverage, charging higher premiums, or refusing to cover care related to those conditions. Insurers can’t impose lifetime or annual dollar limits. Plans must cover the Essential Health Benefits. Over 20 million people have gained health insurance and over 12 million people have gained Medicaid coverage through Medicaid expansion because of the ACA. All of this is at risk.

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Action Alert: Add Your Organization As A Signatory to the Key Principles for Mental Health Platforms!

Deadline: Wednesday, December 18; 12:00 Noon Eastern.

In response to some of the terrible proposals we have seen from presidential candidates around mental health that call for increased institutionalization and forced treatment, NCIL has joined a group of national mental health and disability rights organizations to develop a set of principles on mental health to share with campaigns. We are doing this to make our priorities on these issues clear, and we hope other candidates will take our community into account before developing their proposals. After consulting with attorneys knowledgeable in this area, we have determined that this is an allowable form of advocacy for a 501(c)(3).

These principles are open for signature from national, state, and local organizations. If you would like to sign on, please email Jennifer Mathis from the Bazelon Center at with your organization’s name (as you would like it to appear) and your state. The deadline to sign on is Wednesday, December 18 at 12:00 Noon Eastern. Please feel free to share this with other groups who may be interested as well.

Call for Workshop Proposals: 2020 Annual Conference on Independent Living

Conference Logo: Evolution of our Revolution - 2020 Annual Conference on Independent Living. Graphic features a speech bubble and heart icon.

July 20-23, 2020; Grand Hyatt, Washington

Submit a workshop proposal

NCIL’s Annual Conference is the largest Independent Living event of the year. NCIL regularly hosts over 1,000 people, including grassroots advocates, CIL and SILC leadership, members of Congress, government officials, and representatives from other organizations that work for justice and equity for people with disabilities.

The theme of NCIL’s 2020 Annual Conference on Independent Living will be Evolution of Our Revolution. 2020 will mark the 30th anniversary of the ADA and serve as a time to reflect and celebrate. We must also look forward and commit ourselves to the promise that the IL Movement belongs to everybody with a disability.

The Independent Living Movement is built on advocacy, love, and empowerment. We must fulfill this promise through discussions and real work to include and elevate individuals with disabilities who have not been welcomed or included.

Together we can build a more just, equitable, inclusive, and powerful Independent Living Movement. Therefore, NCIL seeks workshops that will advance the Independent Living Movement through intersectional discussions of equity, inclusion, and leadership development.

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Share Your Thoughts: Help Us Make Our Conference More Accessible

Every year, people come to Washington, DC to attend NCIL’s Annual Conference. We talk about how to make sure people with disabilities can live in our communities and have control over our lives. It is a chance to learn, plan, advocate, and have fun together. But we know the conference is not accessible to everyone in our community. And we want to change that.

Are you interested in presenting at – or attending – the NCIL Conference? Have you found it is not accessible to you? If so, we want to hear from you.

We want to hear from everyone; but we especially want to hear from people from groups who have been underrepresented at the Conference. This includes people whose disabilities are underrepresented, and multi-marginalized disabled people.

We need your input and guidance; but we are ready to do the work. And we are committed to working – on our own, and with you – to address these barriers. We want to make our conference as accessible as possible.

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Organizers Forum: Census Outreach Inside & Outside Disability Communities

We must make sure that people with disabilities are counted in the 2020 census, to ensure recognition of our diverse communities in every way — program funding, voting, city planning, education, employment, and more. Join the call to learn about and discuss how we can make sure disabled people participate in the census, despite the barriers. We’ll hear from people who have planned census outreach targeting people with disabilities, and we’ll learn from people doing census outreach in other marginalized communities.

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Recent FTA Announcements: New Funding Opportunity and Matching Funds Webinar

New Funding Opportunity

The Federal Transit Administration (FTA), an agency within the U.S. Department of Transportation that provides assistance to local public transportation systems, recently announced a new funding opportunity called the Mobility for All Pilot Program. Approximately $3.5 million will go to projects that enhance mobility and access to community services for older adults, people with disabilities, and people with low income. You can find out more about these grants in the FTA’s notice of funding. Applications are due January 6, 2020.

Matching Funds Requirement Webinar

Under federal law, funds from federal government programs – including many ACL-funded programs like Title VII grants – can be considered “matching funds” for FTA public transit formulary grants. On Thursday, November 21, the FTA and the Administration for Community Living are hosting a webinar entitled Expanding Access to Transportation for Older Adults and People with Disabilities. On the webinar they will discuss how ACL and FTA have partnered to leverage federal investments in  transportation to increase access for people with disabilities and older adults; the new Mobility for All Pilot Program (link above); and the opportunity for FTA applicants to use ACL grants funds spent on transportation to satisfy the 20% match requirement of the FTA grant. Learn more and register online.

Today: Call-In Day for the ABLE Age Adjustment Act!

This December will mark five years since the passage of the Achieving a Better Life Experience (ABLE) Act, which started to allow disabled people to create tax-free savings accounts (“ABLE Accounts”). Over the past five years, ABLE Accounts have helped over 50,000 people with disabilities save money and pay for things like housing, transportation, and healthcare costs without jeopardizing their access to Medicaid home and community based services (HCBS) and other needed supports. Learn more about ABLE accounts at

Unfortunately, millions of people don’t have access to ABLE Accounts, because a person is only eligible if they acquired their disability before the age of 26. The ABLE Age Adjustment Act (S. 651 / H.R. 1814) has the potential to change that. The ABLE Age Adjustment Act would dramatically expand eligibility for ABLE Accounts by allowing people who acquired their disability before the age of 46 to become eligible. If the ABLE Age Adjustment Act is passed into law, approximately six million more disabled people will be eligible for an ABLE Account!

Take Action Now!

Today, Thursday, November 14, there is a National Call-In Day for the ABLE Age Adjustment Act. 

  1. RSVP, Share, and Participate in today’s National Call-In Day! Find more information, including sample talking points, at the Facebook event. RSVP and share widely!
  2. Boost the event on social media! Use the handle #ABLEAgeNow
  3. Call your Representative and Senators! Tell them to support the ABLE Age Adjustment Act (S. 651 / H.R. 1814) and pass it immediately! Call the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY). You can find your Senators’ direct phone number and contact form at and your Representative’s direct number and contact form at

Marriage Equality Is Still Not a Reality: Disabled People and the Right to Marry

By Eryn Star, NCIL Summer Policy Intern

“We’re done fighting for marriage equality; we have it now, so we have to focus on other issues instead!” is something I’ve been hearing a lot in queer spaces for the past couple of years. I understand where many people are coming from; marriage is an institution that has been used as a tool of oppression against marginalized people, and the focus on marriage equality did lead to many LGBTQ+ rights issues getting pushed aside. However, that should not be used to deny that marriage equality remains an issue in the United States for disabled people. It is necessary for us to address this because it is both a healthcare and civil rights issue.

A major reason why many disabled people are unable to marry is because of SSI and Medicaid. SSI and Medicaid are needs-based and focus on current assets and income. If you are on SSI and/or Medicaid and you marry a partner not on those programs, your partner’s income and assets are taken into consideration, and so both of your incomes and assets will be used to determine your eligibility. Because the assets and income combined often becomes too high to qualify for these programs, many disabled people have lost their SSI and Medicaid benefits. As a result, some disabled people have been forced to divorce and live separately in order to keep SSI and/or Medicaid. If both partners are on SSI and/or Medicaid, they have an even higher risk of losing their benefits. Not only would their income and assets be combined, but they are also hit by a marriage penalty. Married couples are allowed to have less in assets than the partners would be allowed to have as individuals. They receive a maximum total benefit that’s significantly less than what they would receive on individual benefits, and is in fact only slightly more than one person’s individual benefits.

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