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

Healthcare & Community 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).

Survey Invitation: The Birds and the Bees are for Everyone

Please consider participating in this important survey and sharing it with others you think may be interested.

Alie Kriofske Mainella is a doctoral student at the University of Wisconsin Madison. She is currently working on her dissertation, which is called “The Birds and the Bees are for Everyone: An examination of the impact of sexual health education for people with developmental disabilities on sexual self-concept and subjective well-being”. Alie is also a long-time sexual health educator for people with disabilities and her dissertation is focusing on people with spina bifida and cerebral palsy. The survey should take about 20-30 minutes to compete.

Take the survey[Read more…]

Take Action for MFP and DIA During the Recess!

Members of Congress are home on recess until Monday, November 26. With the remaining weeks of this Congressional session running low, this is our key opportunity to talk with them about our priorities for the end of 2018! Please talk with your Senators and Representative about the EMPOWER Care Act and the Disability Integration Act this week!

NCIL logo - National Council on Independent LivingTake Action!

EMPOWER Care Act: Urge your Senators and Representative to pass the EMPOWER Care Act (S. 2227 and H.R. 5306) during the lame duck session! The EMPOWER Care Act is a bipartisan bill that would reauthorize the Money Follows the Person (MFP) demonstration program, which has freed over 88,000 disabled people from institutions. MFP expired in 2016, so we need action NOW. Urge your Members of Congress to support this important bill – it’s time to reauthorize MFP and pass the EMPOWER Care Act!

Disability Integration Act (DIA): If your Senators or Representative aren’t cosponsoring the Disability Integration Act (S. 910 and H.R. 2472) yet, urge them to do so over the lame duck session! The DIA is a bipartisan bill that would help disabled people stay in our homes and communities, and our members of Congress need to hear how important this bill is to their disabled constituents. If they aren’t cosponsoring the bill, what are they waiting for? We need ALL our Members of Congress to support the DIA! If you get in touch with your Senators or Representative about DIA, please email an update to update@c4ci.org.

GAO Requests Information from NCIL on Medicaid Eligibility

In 2011, the National Council on Independent Living joined a coalition of other groups in commenting on Centers for Medicare & Medicaid Services (CMS) rules related to implementing eligibility determinations under the Patient Protection and Affordable Care Act (PPACA). The comments related to concerns that people with disabilities might lose access to home and community based services, Medicaid Buy-In programs, and other long-term services and supports if they were determined eligible for a “new adult” group created as part of Medicaid expansion.

Although CMS addressed these comments in their final regulation, the Government Accountability Office (GAO) is interested in learning more about how states are implementing this guidance. The GAO is interested in learning from NCIL members who have experience assisting individuals to apply for Medicaid before and after implementation of PPACA, or general knowledge of this process, specifically as it relates to individuals who could benefit from home and community based services waivers and Medicaid Buy-In programs.  [Read more…]

Reminder: Share Your Experiences with Medicare’s In Home Rule with NCIL

Have You Had Problems with Medicare’s ‘In Home Rule’?

The Centers for Medicare & Medicaid Services’ (CMS) ‘In Home Rule’ restricts Medicare coverage of mobility assistive equipment (wheelchairs, walkers, scooters, and other mobility devices) to only those needed for assistance with Mobility-Related Activities of Daily Living (MRADLs) in the home. MRADLs include things like feeding, grooming, bathing, etc. Medicare does not consider someone’s needs outside of the home when determining which assistive device to cover.

NCIL has been asked to provide examples of people who have experienced barriers because of the In Home Rule. If you have had difficulty getting the appropriate wheelchair or assistive device, been denied a needed device altogether, or if you are not able to use your wheelchair or other assistive device in the settings you need because of this rule, we want to hear from you! Please contact lindsay@ncil.org and share how the In Home Rule has impacted your life.

An Update from the NCIL Chronic Pain and Opioids Task Force

The National Council on Independent Living’s Chronic Pain and Opioids Task Force supports legislative efforts to stem opioid addiction and overdoses in our community and increase access to treatment. While the Substance Use-Disorder Prevention that Promotes Opioid Recovery and Treatment (SUPPORT) for Patients and Communities Act of 2018, which was signed into law on October 24, 2018, does partially achieve that, we also have several concerns with this new law.

NCIL logo - National Council on Independent LivingThe SUPPORT for Patients and Communities Act furthers public safety goals including stopping the flow of illegal mail-order opioids and reducing the supply of counterfeit pills. This legislation also expands access to some addiction treatment and services through Medicare, Medicaid, and federal grant programs.

However, while the aims of the bills are widespread, many of the bill’s provisions focus on reducing opioid prescribing. We are disappointed there was no mention of the fact that most abuse occurs from pill factory activity and illicit opioid use, and not from people being prescribed opioids under supervised treatment for chronic pain. We advocate for continued access to appropriate controlled use of opioids for people with chronic pain under physician care.  [Read more…]

Ask Congress to Contact Committee Leadership for H.R. 3730 to Restore Access to Critical Components of Manual Wheelchairs

Source: NCART

Elections are right around the corner, but we still have a window of opportunity to get Congress to pass H.R. 3730, legislation needed to restore access to critical components of Complex Rehab Manual Wheelchairs.

Recent surveys of clinicians and CRT suppliers illustrated access problems for individuals using this specialized equipment and underscored the need for Congress to take action before year-end. With 118 bipartisan cosponsors and over 50 national disability and clinician organizations supporting it, the bill is primed for passage.

Your voice is needed. Use the link below to contact your Representative and ask that they reach out to the leadership of the Ways & Means and Energy & Commerce committees (listed below) to push for passage of H.R. 3730 this year. Additional resources are also available at www.protectmymobility.org.

We can get this important legislation across the finish line if we come together collectively. Send the message now and share the link with others who will take action to protect access for people with disabilities.

Contact Congress about this issue using the online platform[Read more…]