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

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…]

IMPROVE Act Passed the House – Now Call Your Senators!

On Tuesday the House of Representatives 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.

Tell Your Representative to Vote Yes on the IMPROVE Act TODAY!

The Money Follows the Person program (MFP) officially expired in 2016, and today the House of Representatives is scheduled to vote on a bill that would renew the program for three months. The IMPROVE Act (H.R. 7217) was introduced last week in the House and a companion bill is expected in the Senate very soon. While three months is not nearly long enough to sustain the vital work of MFP, this extension will give the program a needed bridge into the 116th Congress, where we will continue our advocacy for a longer renewal.

NCIL logo - National Council on Independent LivingMFP has helped free over 88,000 people from institutions, and 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.

Call your Representative today and tell them to vote YES on the IMPROVE Act! It is critical that members of Congress hear that extending MFP by passing this bill now is a priority to their constituents! All members of Congress can be reached by calling the Capitol Switchboard at (202) 224-3121 or (202) 224-3091 (TTY).

Free Webinar: Findings from the 2018 National Survey of I&R/A Agencies

NASUAD Logo - National Association of States United for Aging and DisabilitiesNASUAD, in partnership with the National Council on Independent Living (NCIL), surveyed aging and disability Information & Referral/Assistance (I&R/A) agencies nationwide in 2018 to learn about important trends and developments in the field. The survey looked at a variety of key topics, including referrals and service needs; partnerships and system building; technology; quality, training and certification; financing and sustainability; and changing inquirer demographics. Join us for this webinar to hear about the themes and findings that emerged from the survey. From serving more individuals with complex needs to assisting inquirers in new ways, I&R/A programs are operating on the front lines of a changing service delivery system.

Real-time captioning will be provided for this webinar.

Our presenters are Nanette Relave, Senior Director of the National Information & Referral Support Center, NASUAD, and Lindsay Baran, Policy Analyst, NCIL.

Help Set NCIL’s Priorities: NCIL Legislative & Advocacy Survey to Be Released This Week!

Dear NCIL Members,

NCIL logo - National Council on Independent LivingI’m writing to let you know that later this week, you will be receiving a survey that will help determine the priorities of NCIL during the 116th Congress. We really need your help by taking the time to fill it out. Our work at NCIL is determined by our membership, and this is what sets us apart from other organizations. Your answers to the survey will directly impact our legislative and advocacy work moving forward.

Please take the time to fill out the survey and I look forward to reviewing these results.

In Solidarity,

Sarah Launderville
Vice President

CIL-NET Presents: A National Learning Collaborative on Housing at Centers for Independent Living

This Learning Collaborative is part of Our Homes, IL-NET’s series of trainings and resources on accessible, affordable, integrated housing for Centers for Independent Living (CILs) and Statewide Independent Living Councils (SILCs). The lack of accessible, affordable, integrated housing remains the biggest obstacle as CILs implement the new core services of transition and diversion. Expanding housing is a key component of the provision of CIL core services and successful outcomes for consumers.

Are you ready to amplify your housing efforts, but feel like you need some assistance to get there?

CIL-NET is offering a new National Learning Collaborative on Housing to support CILs that are ready to roll up their sleeves and build solutions to one of the most persistent barriers to independence for people with disabilities.

IL-NET Logo - CIL-NET + SILC-NETGoal of the Collaborative: To expand accessible, affordable, integrated housing options through the creation of innovative, replicable housing action plans at CILs across the country based on community needs and agency capacity.

What is a Learning Collaborative?

The National Learning Collaborative on Housing at Centers for Independent Living is much more than training. From March to October of 2019, our facilitators will work with a dedicated group of CILs to support one another as they plan programs, activities, and other innovations to expand affordable, accessible, integrated housing in their states and communities. Participation in the Learning Collaborative takes a very real commitment of time and resources. Participants in the collaborative will learn alongside and support one another. A successful collaborative requires commitment, teamwork, and follow-through. Therefore, we are asking interested individuals to apply to participate. A maximum of 12 CILs will be selected for participation with a maximum of two individuals per CIL.  [Read more…]

NCIL Statement on the Passing of President George H.W. Bush

The National Council on Independent Living mourns the passing of former President George H.W. Bush. He died on Friday, November 30, 2018, at the age of 94.

On July 26, 1990, President Bush signed the Americans with Disabilities Act, which solidified into law the civil rights of people with disabilities in the U.S. At the signing ceremony, the words he spoke became words often repeated in our community to symbolize the significance of the law’s passage: “Let the shameful wall of exclusion finally come tumbling down.” Read full remarks.

NCIL Executive Director Kelly Buckland said, “President Bush didn’t simply sign a historic piece of legislation. The ADA passed with strong, bipartisan support under – and in part because of – his strong, ongoing leadership.” In 2015, President Bush listed the ADA among his proudest achievements as President, saying, “It’s something I’m very proud of – perhaps proudest of when I was President.”

NCIL mourns the loss of President Bush, whose contributions and commitment to the civil rights of Americans with disabilities will not be forgotten.

After lying in state for two days at the Capitol Building, a funeral service will be held for President Bush in Washington today (Wednesday) at 11:00 a.m. Eastern at the National Cathedral. Today will be a national day of mourning and the federal government will be closed. After today’s funeral, he will be flown back to Texas and interred on Thursday. Details about both the DC and Texas services and ceremonies can be found on the official schedule (PDF). Several news networks will be covering the services Wednesday and Thursday, including PBS stations nationwide and C-SPAN online. We encourage you to attend these events and tune in remotely to show your gratitude for his signing of and commitment to the ADA and people with disabilities.

NPR Seeks Public Input on the ADA!

Tomorrow (Tuesday, December 4), National Public Radio’s (NPR) 1A radio show is doing a segment on the Americans with Disabilities Act (ADA). They are asking for input from the public – including information about what’s wrong with the law and what needs to be changed. We need to make sure they also hear from people with disabilities about the importance of the ADA and what’s right with the law! Share your stories about how the ADA has protected your rights or provided you greater access to your community. The law may not be perfect, but having seen repeated attempts in Congress to weaken the ADA, we need to keep fighting to protect it.

More information about the show, including times and information on how to tune in, can be found at Call in at: 855-236-1A1A (1212).


Deadline Extended: Apply for the NCIL Path to Empowerment Grants By Monday, December 10!

The Deadline to apply for this grant has been extended to Monday, December 10, 2018.

The link to the application form was incorrect in one of our earlier announcements. Our application links will always lead directly to a form. You should never have to login to complete anything. Please make sure to use the links below to access the application form.

NCIL is excited to announce that we have received continued funding from the Craig Neilsen Foundation for Path to Empowerment projects! NCIL is seeking five (5) to ten (10) Centers for Independent Living (CILs), Statewide Independent Living Councils (SILCs), or Independent Living Associations that are interested in providing programs to enhance the quality of life for people with spinal cord injury (SCI).

Eligibility – Applicants must:

  • Be a current NCIL member;
  • Be a Center for Independent Living (CIL), Statewide Independent Living Council (SILC), or Independent Living Association; and,
  • Provide matching funds of at least 5% of the total funds requested from NCIL.

NCIL will provide funding ranging from $10,000 to $25,000 to support Independent Living; Rehabilitation; Employment; Assistive Technology; Arts, Sports, & Recreation; or Education programs. Examples include:

  • Independent Living – one-to-one or group IL skills training; one-to-one visits to people with SCI in rehab facilities, one-to-one assistance to individuals wanting to leave nursing homes for more independent living arrangements;
  • Rehabilitation – patient assistance funds to offset costs of rehab for individuals with SCI, educating newly injured individuals and their families on SCI;
  • Employment – assistance with resume and interview preparation, applying for jobs and learning how to handle disability issues or concerns during the interviewing, hiring and employment process;
  • Assistive technology – assisting consumers in identifying and acquiring necessary technology to enhance independence and quality of life;
  • Arts, Sports, & Recreation – programs that teach wheelchair sports, provide fitness, wellness and nutrition opportunities and exercise classes, visual, written, and performing arts classes, exhibitions, and performances for people with SCI;
  • Education – one-to-one or group tutoring, preparing newly injured students with SCI to return to school/university; GED classes for consumers.

NCIL will select the applicants that best demonstrate the capacity and resources necessary to make the greatest impact for consumers with SCI. All program applicants in each focus category must demonstrate the capacity to enhance quality of life for people with SCI. Additionally, applicants should document how they will fulfill the Neilsen Foundation evaluation criteria including impact, innovation, and relevance to the area of focus on traumatic and chronic spinal cord injury; feasibility based on documented experience, expertise, available resources, and organizational commitment; sustainability of proposed project or program; collaboration and demonstration of meaningful community partnerships including the avoidance of duplication of services and demonstration of shared community resources; and clear project evaluation methods. While applicants must communicate how their proposed activities will improve outcomes for consumers with SCI, NCIL acknowledges and appreciates that programs funded under this grant will serve consumers with all types of disabilities.

The application and project timeline is as follows:

  • November 7 2018: 2019 Path to Empowerment RFP opens
  • December 10, 2018: 2019 Path to Empowerment RFP closes
  • January 5, 2019: Grantees selected
  • January 15, 2019: Pass-through money distributed to Grantees
  • February 1, 2019: Grantee programs begin
  • October 30, 2019: Project ends
  • November 12, 2019: Grantee final reports due

To apply, interested parties must use the Application Form, which is available online.  We are also providing Word and plain text formats in case you want to look through the application or experience any access issues with the online form.

The application deadline is 11:59 PM EST, Monday, December 10, 2018.