the advocacy monitor

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

Are They Buying What You’re Selling? An Inside Look at What Health Plans Need from Community Based Organizations

Health plans responsible for Managed Long Term Services and Supports (MLTSS) not only care about the health and well-being of their members, but they also have a direct goal to help those individuals remain in their homes and communities whenever possible. Community Based Organizations (CBO)* are in a unique position to partner with health plans to successfully manage the services and supports that impact people with disabilities and their social determinants of health, which when properly addressed facilitates positive outcomes for the person served and avoid outcomes that limit their ability to remain in their home and community– things that health plans and CBOs alike want to avoid. Join us on July 26, 2017 from 12:30 – 1:30P Eastern as Kristin Murphy, Director of Market Development with Centene will provide an insider’s look into what health plans seek when partnering with Community Based Organizations.

Learning Objectives:

  • Understand what health plans look for when working with CBOs
  • Understand how you may maximize your partnerships with health plans
  • Understand where CBO and health plan goals align

Business Acumen Center Logo - Providing Resources to Sustain Disability OrganizationsThis one hour webinar is available as part of the Disability Business Acumen Grant provided by the Administration for Community Living to the National Association of States United for Aging and Disabilities in collaboration with nine national partners*.


* CBO is a broad term to describe local organizations that offer community living services and supports to advance the health, well-being, independence, and community participation of people with disabilities and older adults. CBOs include Centers for Independent Living, developmental disability organizations, University Centers for Excellence in Developmental Disabilities Education, Research & Service, behavioral health organizations, Protection and Advocacy Agencies, Aging and Disability Resource Centers, Area Agencies on Aging, aging services organizations, faith-based organizations, Native American tribal organizations (American Indian/Alaskan Native/Native Hawaiian), nutrition program providers and other local service providers for persons with disabilities and/or older adults.

** Grant Partners include: American Association on Health and Disability (AAHD), American Network of Community Options and Resources (ANCOR), The Autistic Self Advocacy Network (ASAN), National Association of State Directors of Developmental Disabilities Services (NASDDDS), National Association of States United for Aging and Disabilities (NASUAD), National Council on Independent Living (NCIL), National Council on Aging (NCOA), National Disability Rights Network (NDRN), Mercer, University of Minnesota – Institute of Community Integration

GOP Fumbling on Healthcare – Thank you! Please Keep It Up!

Two more Republican Senators announced on Monday that they oppose the Better Care Reconciliation Act (BCRA). Senator Mike Lee from Utah and Senator Jerry Moran from Kansas both issued statements expressing their opposition. Because Republicans can only afford two no votes, and Senator Collins (ME) and Senator Paul (KY) already confirmed their opposition, the Senate does not have the support needed to pass the BCRA and will not move forward with the vote.

NCIL logo - National Council on Independent LivingFirst, thank you for all of your calls, emails, meetings, protests, and other forms of action! The failure of this bill was a direct result of your work all over the country! As has been said before, the disability community has been leading the advocacy efforts against this bill and has been building momentum in nearly every state. Congratulations on a big win!

That said, while the bill may be dead, the efforts to get rid of the Affordable Care Act (ACA) and cut Medicaid are not over. Senate Majority Leader McConnell said Monday night that instead they will vote on a “repeal-only” measure next week that would repeal the ACA with a two-year delay. While a straight repeal vote is highly unlikely to pass – in fact, Senators Capito, Collins, and Murkowski have already expressed their opposition – it’s important to note that repeal without a replacement would be a disaster. All it would do is kick the can down the road, and it would likely still have the same (or very similar) results. It would eliminate the enhanced funding for community integration used by the Community First Choice Option and other incentives and protections included in the ACA. Additionally, since a straight repeal would not restructure and cut Medicaid, which we’ve seen is a GOP priority, we can expect that to be on ongoing effort outside of the repeal vote.

The Senate may be at a standstill for now, but we need to keep up our advocacy efforts. Moreover, even if we stop efforts to cut and cap Medicaid and repeal the ACA, disabled Americans will continue to be forced into unwanted and unnecessary institutionalization where they are denied their most fundamental rights. Now more than ever, we need Congress to pass the Disability Integration Act (DIA), S. 910 and H.R. 2472.

We need to keep up our advocacy efforts on Medicaid and ACA repeal, but we also need to focus on urging both Republicans and Democrats to co-sponsor DIA!

Take Action!

Look at the links provided above to see if YOUR Senators and Representatives are co-sponsoring the DIA. If not, contact them! When speaking to Democrats and progressives, highlight the critical role the disability community played in stopping this healthcare bill. Now, we need Democrats and progressives to support OUR efforts. When speaking with Republicans, focus on the fact that life and liberty are guaranteed under the Constitution, and that this bill ensures that disabled Americans don’t have those rights taken away from them by states or managed care companies.

And remember, this fight over ACA and Medicaid is not over. We will continue to keep you updated as healthcare and Medicaid efforts in Congress evolve and move forward, and in the meantime, keep telling your Senators how vital Medicaid and/or the ACA are to you! Until Republican members of Congress say that they will work in a bipartisan way on healthcare and the ACA, and until they say they will vote NO on any measures that would cap and cut Medicaid, we need to keep up our efforts!

Appropriations Update: Keep Pushing for An IL Increase!

Last week the House Appropriations Subcommittee on Labor, Health and Human Services, Education, and Related Agencies (L-HHS-ED) approved the FY 2018 L-HHS-ED spending bill. The full House Appropriations Committee will mark up the bill tomorrow, July 19.

NCIL logo - National Council on Independent LivingThe spending bill proposes level funding for the Independent Living Program, which amounts to a total of $101,183,000 ($78,305,000 in Part C funding and $22,878,000 in Part B funding). Thankfully, the bill does not include the President’s proposal to eliminate Part B funding and ‘consolidate’ it with the State Council on Developmental Disabilities funding and Traumatic Brain Injury funding, which would have resulted in a $57 million reduction in funds for people with disabilities.

Funding for the IL Program has hovered around these levels for years, and simply put, it is not enough to meet our needs. While we are happy that the IL program did not see any cuts in the House bill, level funding just does not cut it! For several years we have been asking Congress for a $200 million increase for the Independent Living line item. This number was determined after a careful analysis of the needs of the IL community, which includes the increasing demands on the IL Program, the addition of all three pieces of the fifth core service, and overcoming devastating cuts.

Take Action

We still have time to fight for an increase in FY 2018 appropriations. We know there are a lot of other issues competing for attention, but IL funding must remain a priority! Please contact your Senators and Representatives! Only the IL community can ensure our legislators understand the importance of the IL Program and the critical need for increased funding. Members of Congress need to know that without adequate funding, their constituents will pay the price. CILs in their own states and districts will be unable to support their constituents with disabilities to live independently in their homes and communities. So, tell your members of Congress why the IL Program is vital for you! Refer to our talking points for guidance. And, please encourage them to visit your CIL so they can see the work that’s done in their community every day!

Organizers Forum: REV UP! Registering Voters with Disabilities

  • Tuesday, July 18, 2017
  • 1:00-2:00 p.m. Eastern
  • RSVP online


  • Zach Baldwin, Director of Outreach, American Association of People with Disabilities
  • Molly Broadway, Training and Technical Specialist for Voting Rights, Disability Rights Texas
  • Sha Stephens, Executive Director, Arkansas State Independent Living Council (ARSILC)
  • Maggie Knowles, PAVA and Development Coordinator, South Carolina P&A

National Disability Voter Registration Week is July 10-14! Time to REV UP — Register, Educate, Vote, Use your Power! Please join this call to hear what exciting things are happening around the country to get more people with disabilities registered to vote, and learn what you can do in your local community.  [Read more…]

NCIL Conference Less Than Two Weeks Away: Additional Speakers Confirmed!

Revolution - A Global Independent Living Movement - Annual Conference on Independent Living 2017. Graphic: Continents have been added to NCIL's logo (a blue semi-circle), which forms a globe. A red heart sits between the end points of the semi-circle.We’re looking forward to seeing many of you at this year’s Annual Conference on Independent Living from July 24-27 in Washington, DC! If you haven’t registered yet, see below for more information. You don’t want to miss it!

We are happy to announce the confirmation of two additional speakers to our lineup. This year, we are excited to welcome Judy Heumann as our keynote speaker and Melissa Ortiz, who will be joining Bob Williams at our closing plenary.

Judy Heumann is an internationally recognized disability rights activist and an early leader in the Independent Living movement. She is one of the leading voices on disability rights around the world, which makes her perfect to keynote this year’s NCIL conference focusing on the Global Independent Living Movement!

Since the 1970s, Judy has been a powerful force in the disability community. She has a long history of working for disability rights, which has included working for state government, the federal government, and non-profit organizations. She also has a long history of involvement and leadership within the Independent Living movement, which includes co-founding, serving as the Deputy Director and serving on the Board of the Center for Independent Living in Berkeley. Judy was instrumental in organizing the Federal hearings held at the Berkeley CIL that led to Title VII of the Rehabilitation Act of 1978.

Judy worked as the Assistant Secretary of the Office of Special Education and Rehabilitation Services (OSERS) at the US Department of Education under President Clinton, was the World Bank’s first Advisor on Disability and Development, and served as Special Advisor for International Disability Rights for the US State Department. In addition to co-founding the CIL at Berkeley, she co-founded the World Institute on Disability (WID) and Disabled in Action (DIA). She has also been deeply involved with several landmark pieces of legislation for people with disabilities, including Section 504 of the Rehabilitation Act of 1973, the Individuals with Disabilities Education Act (IDEA – previously known as the Education for All Handicapped Children Act), and the Americans with Disabilities Act (ADA).

Melissa Ortiz joined the Administration for Community Living (ACL) in June of 2017 as the Commissioner of the Administration on Disabilities (AoD). Melissa believes that everyone has the right to life, liberty, and the pursuit of happiness, disabled or not. Her mission is to provide people with disabilities with the necessary tools and supports to live independently. Her belief is that these fundamental rights are woven into our national fabric.

In her role as Commissioner of the AoD, she is enthusiastic about working on behalf of Americans with disabilities. She has worked in the classroom in Nashville, Tennessee, in the nonprofit sector in Washington, DC and New York City, on a number of political campaigns around the country, and has bent the ear of some of the country’s most powerful leaders in the process.

She identifies as a “happy patriot” and is committed to driving a dialogue between both sides of the political aisle and people with disabilities. She is uniquely suited to bridge the gap between these groups and is passionate about creating solutions. She currently resides in Washington, D.C. with her husband Tony and Service Dog Dachshund, Annie Oakley.  [Read more…]

Healthcare Vote Expected Next Week: The Fight Is Not Over!

The Senate released their updated version of the Better Care Reconciliation Act (PDF) yesterday, and all of our concerns remain the same. Read the Senate summary (PDF). The new version will still cut Medicaid by $772 billion, with an even more restrictive growth rate and deeper cuts starting in 2025. Fifteen million people will lose Medicaid. The bill also still eliminates the enhanced match for the Community First Choice Option, removes protections for people with pre-existing conditions, and allows waivers to eliminate essential health benefits, on top of adding a new provision to create separate insurance products for people with higher and lower health needs.

NCIL logo - National Council on Independent LivingThis new version of the bill has made NO improvements. Despite that, we’re hearing that Republicans who were undecided or even opposed to the previous version of the bill are now leaning toward voting YES. Republicans are reportedly becoming more unified around this new version, and we cannot let that happen!

The vote is expected to take place next week. That means that we have less than one week to fight this dangerous bill, and every single day counts. We need to make sure our Senators understand how dangerous this bill is for their constituents with disabilities. We need them to understand that we are literally fighting for our lives. And we have less than one week to make sure they hear us.

Take Action!

  • Call your Senators by dialing the Capitol Switchboard at (202) 224-3121.
  • Use Resistbot to have your texts turned into faxes, mail, or hand-delivered letters.
  • Use to fax your Senators for free.
  • Find your Senator’s email address, Twitter handle, and other information through Contacting Congress.
  • Please see our previous alert for additional ways to take action. Every single one of us needs to keep the pressure on our Senators! Call often, send emails, keep protesting, and Tweet at GOP Senators; take action in every way you can!

* Priority Senators

We encourage everyone to reach out to their Republican Senators, but the following is a list of top priority Senators, including phone numbers for all of their offices, fax numbers, Twitter handles, and contact pages, as well as information for their healthcare staffers. Please utilize as many of these options as possible! If these are not your Senators, please make sure to reach out to everyone you know in their states!  [Read more…]

Action Alert: Pledge to Promote the Disability Vote This Summer

2017 may be an off year for national elections, but across the country, registering to vote and participating in local elections are as important as ever. This summer, there are many ways to get involved with promoting voter registration and exercising the right to vote, from participating in National Disability Voter Registration Week to supporting National Voter Registration Day.

National Disability Voter Registration Week (NDVRW) 

35th Anniversary Logo: NCIL – National Council on Independent Living. Celebrating 35 Years of Advocacy. Graphic features party candles.This year, the American Association of People with Disabilities’ National Disability Voter Registration Week (NDVRW) falls on July 17th to 21st, 2017. There are several ways to get involved:

  • Sign your organization on as a supporter of the Rev UP campaign and NDVRW.
  • Organize a voter registration event in your community or at your CIL.
  • Ask your local elected officials, such as your mayor, governor, or city council, to issue a Proclamation declaring the 17th to the 21st National Disability Voter Registration Week in your area.
  • Send out press releases or social media posts in support of the week on your CIL’s platforms.
  • Get more ideas on ways to celebrate and support NDVRW, including sample social media posts, toolkits for setting up voter registration events, and more, on the AAPD’s NDVRW page.

National Voter Registration Day 

Established in 2012, National Voter Registration Day (NVRW) was established as a national holiday to promote the importance of voting and to celebrate the right to vote. This year, NVRW falls on Tuesday, September 26, 2017. CILs and SILCs are encouraged to sign on as partners of NVRW to promote it within the disability community and to show that disability organizations value voter registration and voting! Sign on to become a partner of NVRW today.

If you have any questions, please contact Sarah Blahovec, Disability Vote Organizer, at or 202-207-0334 ext. 1103.

Last Chance: Pre-Event Registration for NCIL’s 2017 Annual Conference on Independent Living Closes at Midnight, July 14!

Revolution - A Global Independent Living Movement - Annual Conference on Independent Living 2017. Graphic: Continents have been added to NCIL's logo (a blue semi-circle), which forms a globe. A red heart sits between the end points of the semi-circle.All pre-event registrations for the 2017 Annual Conference on Independent Living must be received by Friday, July 14 at 12:00 midnight, Eastern Time.

Individuals may still register onsite, but please note that onsite registration fees differ from standard registration fees and plan accordingly.

Pre-event registration rates:

  • NCIL Member: $265
  • Non-member: $385
  • Daily Rate: $115-160 / day

Onsite registration rates:

  • NCIL Member: $305
  • Non-Member: $430
  • Daily Rate: $210 / day

Register today and save!

To register, use the NCIL online store, which gives you the ability to register up to three attendees with one transaction and accepts Discover, American Express, Visa, and MasterCard, or use the printable registration form (PDF or plain text).

Additional details are available on our conference webpage.

This year’s Annual Conference on Independent Living is shaping up to be one of the most exciting in recent history, and we can’t wait to see you there!

Shop #PrimeDay and Support NCIL!

Score great deals and support NCIL at the same time! If you plan on shopping on Amazon for #PrimeDay today, use NCIL’s custom link.

A portion of your purchase will go to NCIL so that we can keep fighting for community living for all!

Disability Network Business Acumen: Learning Collaborative & Office Hours

Source: National Association of States United for Aging and Disabilities (NASUAD)

This is a reminder that the Disability Network Business Acumen Application is due electronically via email to by 11:59 p.m. EST, Friday, July 14, 2017.

Business Acumen Center Logo - Providing Resources to Sustain Disability OrganizationsIs your Center for Independent Living (CIL) or other organization applying to be a part of the Disability Business Acumen Learning Collaborative? Have questions about the application process? Looking for feedback on the opportunity (or challenge) you’d like to focus on? If so, then please plan to join us on Monday, July 10th from 3:00 p.m. to 4:00 p.m. (EDT) or Wednesday, July 12th from 2:00 p.m. to 3:00 p.m. (EDT) for a Question and Answer call-in session hosted by the Disability Business Acumen Resource Center. With no set agenda, representatives from the Resource Center will be on hand to answer your questions and provide feedback as you develop your Learning Collaborative application.

If you would like to pose a question or just listen in to the discussion, please e-mail to register, submit your question(s) and receive the call-in information. Have a question, but can’t make it to either of the call-in sessions? Send it to – in addition to receiving an individual response, frequently asked questions and responses will be posted to the Disability Business Acumen Resource Center website.

For more information about the Learning Collaborative, please visit the NASUAD website.