the advocacy monitor

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

Healthcare & Community Living

Join Wednesday’s Call-In Day for Money Follows the Person!

Thanks to your ongoing advocacy, Congress passed a short-term Money Follows the Person (MFP) extension (the Medicaid Extenders Act, H.R. 259) into law early this year. On February 25, Congress introduced a new version of the EMPOWER Care Act (H.R. 1342 / S. 548) that would extend the MFP program for five years in both the House and the Senate.

MFP was enacted in 2005 with strong bipartisan support, and is one of the longest running, most successful Medicaid demonstrations. Since it began, 47 states have participated and over 88,000 disabled people have been freed from institutions – and CILs have played a critical role in that. However, MFP expired on September 30, 2016, and the Medicaid Extenders Act provided only three months of funding, so our continued advocacy is needed for a longer-term extension.

The EMPOWER Care Act would extend the MFP program for five years, giving us more time to work toward a permanent solution for MFP. Importantly, now that CILs have been established as a national network required to conduct transition services (as part of the passage of WIOA in 2014), NCIL would like to see a permanent MFP solution that incorporates the CIL network into the bill language. NCIL is committed to that effort, and passing the EMPOWER Care Act into law would serve as a much-needed next step to reaching that goal.

Take Action Now!

  • Participate in Wednesday’s National Call-In Day! Call your Representative and Senators and tell them to support the EMPOWER Care Act and pass it immediately! Call the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY). Find more information at Wednesday’s Facebook event. RSVP and share widely!
  • Other ways to contact your Members of Congress: You can find your Members’ Twitter handles and other contact information on Contacting Congress. (If you post on social media, use the handle #FundMFP)
  • Continue sharing your stories! See our previous alert for more details about the stories we’re looking for, and share them with us for our advocacy efforts in DC.
  • Share with the press! Arrange press interviews highlighting the stories of folks who were able to move home because of MFP, or individuals who are stuck in institutions and would benefit from MFP’s reauthorization. Sharing our stories is the key to gaining the support of members of Congress AND the public. If you successfully get the press to cover MFP, please send a link of the coverage to

Urgent Action Alert: DIA Co-Sponsors Needed!

We need to immediately secure members of the House Energy and Commerce Committee as co-sponsors on the Disability Integration Act – DIA (H.R. 555) in order to achieve movement on this bill in the 116th Congress.

If your Representative sits on the House Energy and Commerce Committee, please reach out to them right away. Tell them, “Please co-sponsor DIA (H.R. 555) today!” Then ask your family, friends, co-workers, and other community members to call and email as well.

This is the committee that will work the DIA in the House. They are in charge of the first part of the process of eventually bringing this bill to a full vote in the House of Representatives.

The House Energy and Commerce Committee has 55 members: 31 Democrats (we need 19 more) and 24 Republicans (we need 23 more).

[Read more…]

Ask Senator Klobuchar to Sponsor the Disability Integration Act!

Senator Amy Klobuchar (D-MN) is the only Democratic 2020 Candidate not listed as a co-sponsor of the Disability Integration Act (DIA)! We want her to sign on today.

On Monday, February 18, 2019 CNN will host at Town Hall with candidate Senator Klobuchar and we want you to contact her via social media to tell her to co-sponsor the DIA today!

Her messaging is: “You won’t be ignored this time” and that’s exactly right. Let’s tell Senator Klobuchar that she will not ignore the disability community and she will sponsor DIA (S. 117) today!

[Read more…]

Organizers Forum: Disability Integration Act

  • Tuesday, February 19, 2019
  • 1:00-2:00 p.m. Eastern; 12:00-1:00 Central; 11:00-12:00 Mountain; 10:00-11:00 Pacific
  • RSVP
  • Call-in: 1-515-739-1285, passcode 521847#
  • Join the meeting online

The Disability Integration Act (DIA) is a civil rights, bipartisan and bicameral legislation, introduced by Senators Charles Schumer, Minority Leader (D-NY) and Cory Gardner (R-CO) in the Senate and Representative Jim Sensenbrenner (R-WI) in the House, to address the fundamental issue that people who need Long Term Services and Supports (LTSS) are forced into institutions and losing their basic civil rights. The legislation (S. 117 and H.R. 555) builds on the 25 years of work that ADAPT has done to end the institutional bias and provide seniors and people with disabilities home and community-based services (HCBS) as an alternative to institutionalization. It is the next step in our national advocacy after securing the Community First Choice (CFC) option.

For this call, we will focus on the history of the Disability Integration Act, the current position of the bill, our goals for the bill, the strategy to get the DIA passed in the House this July, and how advocates across the nation can get involved in helping us pass DIA!

[Read more…]

Short-Term Money Follows the Person Extension Signed Into Law!

Last Friday H.R. 259, the Medicaid Extenders Act, was signed into law. The bill includes three months of funding for the Money Follows the Person (MFP) Program. As we know, three months is not enough to sustain the work of MFP, but it does provide a much needed extension while we continue our advocacy for a longer renewal. This is certainly something to be celebrated! Thank you to all of you for your work to get this done. 

[Read more…]

All the Info You Need for Tomorrow’s Reintroduction Celebration!

Disabled people across the country will be celebrating tomorrow’s reintroduction of the Disability Integration Act (DIA), and we want to make sure you have all the information you need to celebrate with us!

Haven’t made your plans yet? We invite you to join NCIL’s Facebook Watch Party and watch the festivities with others in the NCIL community! To do so, join the group “NCIL Stay Connected In Advocacy”. The Watch Party will start in the group at 3:00 p.m. Eastern.

Don’t have Facebook? You can still tune in! The event will be live-streamed from ADAPT’s YouTube channel:

[Read more…]

Make Your Plans to Celebrate the Reintroduction of the Disability Integration Act with Us!

To celebrate the reintroduction of the Disability Integration Act, NCIL and ADAPT will be holding a celebratory event on January 15 at 3:00 p.m. Eastern. We will also be making a video and audio of the introduction event available so CILs, local ADAPT chapters, and other local groups and individuals can tune in and celebrate along with us!

NCIL logo - National Council on Independent LivingThanks to the ongoing efforts of our siblings at ADAPT, Senator Chuck Schumer (D-NY) and Representative Jim Sensenbrenner (R-WI) have set January 15 as the date to reintroduce the Disability Integration Act in the new 116th Congress. This early introduction is cause for celebration, and the excitement we generate early on will help build momentum for the DIA in this new Congress. Help drive the DIA forward and secure its passage in the 116th Congress by celebrating this momentous occasion with us! 

We hope CILs and NCIL members around the country will join us for this exciting day! Please see the information below on how to host in person celebrations and online watch parties, and make sure to register your events using the links below!  [Read more…]

Reminder: IMPROVE Act Passed the House – Now Call Your Senators!

The House of Representatives has passed the IMPROVE Act (H.R. 7217) with a vote of 400-11. Now the bill moves to the Senate where a vote is expected as early as this week!

NCIL logo - National Council on Independent LivingCall your Senators today and tell them to vote YES on the IMPROVE Act! It is critical they hear that extending Money Follows the Person (MFP) by passing this bill is a priority to their constituents! All Senators can be reached by calling the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY).

About the IMPROVE Act (H.R. 7217): MFP has helped free over 88,000 people from institutions, and its 3-month renewal is a key provision in the IMPROVE Act. In addition, H.R. 7217 also includes an extension of protections for Home and Community Based Services (HCBS) recipients against spousal impoverishment, a permanent exemption from competitive bidding for CRT manual wheelchairs, and an 18-month suspension in Medicare’s application of competitive bidding rates to CRT manual wheelchair accessories.

FDA to Finalize Ban on Electrical Shock Devices

Back in 2016, the Food and Drug Administration (FDA) published proposed regulations that would ban the electrical stimulation devices used to shock disabled people at the Judge Rotenberg Center (JRC). Despite ongoing advocacy from the disability community, in these more than two years the regulation has not been finalized.

NCIL logo - National Council on Independent LivinggoWe recently learned that in mid-October, when the FDA announced their priorities associated with the federal government’s Unified Agenda, they announced their intent to finally finalize the ban. The announcement reads: “We’re also planning to issue a final ban on electrical stimulation devices used for self-injurious and aggressive behaviors. We believe these products present an unreasonable and substantial risk to public health that cannot be corrected or eliminated through changes to the labeling.” This is fantastic news! But, it is by no means a done deal. We must keep the pressure on the FDA until the final rule has been released.

And, even once the rule is finalized, we must remember that our disabled siblings who are being tortured at the JRC will still be stuck in the same institution with the same people who were using these shocks to “treat” them. To that end, we must make sure this next Congress passes the Disability Integration Act (DIA) into law, so all people with disabilities have the right to live in our own communities.

Needless to say, this commitment wouldn’t have happened without the relentless pressure from advocates around the country. Thank you for your efforts, and keep the pressure on the FDA to #StopTheShock!

CILs: SAVE THE DATE for DIA Reintroduction and Plan a DIA Celebration Event!

We are excited to announce that thanks to the ongoing efforts of our siblings at ADAPT, Senator Chuck Schumer (D-NY) and Representative Jim Sensenbrenner (R-WI) have set a date to reintroduce the Disability Integration Act (S. 910 / H.R. 2472) in the next Congress! Please see the message from Anita Cameron below for more information and please mark your calendars for January 15, 2019!

NCIL logo - National Council on Independent LivingTo celebrate the DIA’s introduction in the 116th Congress, NCIL and ADAPT will be holding a celebratory introduction event in DC. We also plan to make video and audio of the introduction event available so CILs, local ADAPT chapters, and other local groups who are interested can hold watch parties, press events, and other celebrations alongside us!

We hope you’ll join us, because we have reason to celebrate: NCIL, ADAPT, and other leaders in the disability community have set an expectation that the House of Representatives will pass the DIA before the ADA’s next anniversary (July 26, 2019). And this is completely achievable! The DIA has already garnered an incredible amount of support, with 143 cosponsors in the House and 25 cosponsors in the Senate. And that’s in addition to nearly 800 organizations signing onto the DIA supporter list.

NCIL has been working with ADAPT on the Disability Integration Act (DIA) for years, and we are confident the 116th Congress will be the one to pass DIA into law. We will be sending more information as the date nears, but please start thinking and planning for an event at your CIL on January 15th!  [Read more…]