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

NCIL Announces the Creation of New Task Forces to Focus on Electronic Visit Verification (EVV) and Chronic Pain / Opioids

The National Council on Independent Living (NCIL) is happy to announce the creation of two new Task Forces.

NCIL EVV Task Force: The 21st Century Cures Act that passed into law in late 2016 included a provision requiring states to implement electronic visit verification (EVV) systems. With implementation deadlines of January 1, 2019 for personal care services and January 1, 2023 for home health services, states are developing plans and beginning implementation. In some states, we have already seen harmful effects of intrusive and burdensome systems. The EVV Task Force will work to coordinate NCIL’s national advocacy strategy as EVV continues to be implemented across the country. If you are interested in joining the EVV Task Force or want to learn more, contact Charlie Carr at or Lindsay Baran at For background information, see NCIL’s Position opposing EVV.

NCIL logo - National Council on Independent LivingNCIL Chronic Pain / Opioids Task Force: As efforts to address opioid addition around the country increase, people with chronic pain and other disabilities continue to be left out of the conversation. This has resulted in increased barriers to effective pain management for people with chronic pain, discrimination against people who use opioids to manage their pain, and treatment / recovery options that are inaccessible to disabled people. The Chronic Pain / Opioids Task Force will work to ensure that the voices of people with chronic pain and other disabilities are part of the ongoing national discussion and to develop a broader advocacy strategy for NCIL. If you are interested in joining the Chronic Pain & Opioids Task Force or want to learn more, contact Lindsay Baran at

An Update from the NCIL Rehabilitation Act / IL Funding Subcommittee

The NCIL Rehabilitation Act / IL Funding Subcommittee would like to thank Jeff Hughes for his hard work as Co-Chair of the Subcommittee. Jeff recently had to resign as Co-Chair but, fortunately for NCIL, he will continue serving as a Subcommittee member. We would also like to thank Dan Kessler for joining Ann Watts McDaniel as the Subcommittee’s new Co-Chair. Much work remains to be done!

NCIL logo - National Council on Independent LivingThe current Administration is posing many challenges for our members and the people we serve. The President’s budget is among our top concerns, as described in NCIL’s recent Budget Alert. Last week, the President released a 2019 budget proposing a $5 million cut to Independent Living, reducing the IL budget to $96 million, if enacted.

CILs have been underfunded for many years. In 2014, Transition services were added as new core services – with no additional funding. As a result, CILs are working harder than ever with insufficient funding. We need to make sure that these proposed cuts to Independent Living do not make it into the Congressional spending bills. We know the impact that Independent Living has on the lives of the people and communities we serve. Now, more than ever, it is important for us to talk to members of Congress about the value of CILs and Independent Living.  [Read more…]

An Update from the NCIL Housing Subcommittee

By Brian Peters & Darrel Christenson, Co-Chairs

Quite a few things have been happening on the housing front in the New Year. On the positive side, Congress passed an $89.3 billion disaster relief package that will provide funding to areas impacted by Hurricane Maria, with money set aside for rebuilding the electrical grids in Puerto Rico and US Virgin Islands. Congress also passed a budget deal that lifted the Budget Control Act cap, enabling many programs to avoid cuts.

equal housing opportunity symbolHowever, on the negative side, Housing and Urban Development (HUD) Secretary Carson delayed the implementation of Affirmatively Furthering Fair Housing until 2025, effectively delaying efforts to combat segregation. President Trump’s FY 2019 budget proposes dramatic cuts of $8.8 billion (18.3% cut compared to 2017 levels) to housing programs!

With the two-year budget deal, “Bipartisan Budget Act of 2018”, the Appropriations Committee will need to complete the FY 2018 funding bill before their deadline of March 23. Advocates should call Congress to insist on increased funding for housing.

President Trump also proposed getting rid of the National Housing Trust Fund, which is targeted mostly at extremely low-income households that rent. Many households with a person with a disability are considered extremely low income. There is also a push in Congress to reform housing finance (Fannie Mae and Freddie Mac) which funds the National Housing Trust Fund. It is very possible that the Fund could lose its source of revenue.  [Read more…]

Organizers Forum: Sexual Assault, Disability, and #MeToo

  • Tuesday, February 20, 2018
  • 1:00-2:00 p.m. Eastern
  • RSVP

In January, National Council on Disability released a report, “Not on the Radar: Sexual Assault of College Students with Disabilities,” which seeks to better understand how colleges respond to, prevent, and support survivors of sexual assault who have disabilities. Speakers will provide an overview of the report, the report recommendations, and discuss how it connects to the national #MeToo movement, and next steps.

[Read more…]

An Update from the NCIL Employment / Social Security Subcommittee

Sam Liss and James Turner, Co-Chairs

The NCIL Employment / Social Security Subcommittee is encouraged by the increasing participation of new and veteran members and is excited about real movement of its legislative policy initiatives. The Subcommittee also appreciates hosting several constructive discussions relevant to its charge.

Our efforts to accelerate interest in our policy proposals, both of which would eliminate key barriers to employment for people with disabilities who reach retirement age, has received notice from the Congressional committees of jurisdiction. An initial meeting with senior staffers of the House Social Security Subcommittee (of Ways and Means) led to a request for data culling and analysis from the chief Social Security Administration actuary. The actuary agreed to the request and suggested that the task will be completed within one month. Upon our receipt of the data and of the results of fiscal analysis, we will return to the House Social Security Subcommittee and present them with cost rationale for moving forward with legislation.  Such legislation, which has achieved apparent bipartisan support thus far, would remove employment restrictions for Childhood Disability Beneficiaries (CDBs) upon reaching retirement age. CDBs are the only population with such restrictions.  [Read more…]

NIDILRR Seeks Peer Reviewers for Upcoming Competitions

The National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) is seeking expert peer reviewers for several upcoming competitions. Expertise in all areas of disability and rehabilitation is welcome. NIDILRR uses teleconferences to conduct all review meetings, so reviewers do not have to travel to participate. Interested individuals who would like to be considered for peer reviewers may send CV and contact information to

Participants Needed: National Survey on Health Reform and Disability

The Collaborative on Health Reform and Independent Living (CHRIL), which is funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR), is looking for adults with disabilities to complete an online survey about getting and using health insurance and health care services. Whether you have private insurance, insurance from an employer, Medicaid, Medicare or no insurance please complete the survey. NIDILRR wants to know how the Affordable Care Act (ACA) may be affecting your life.

Adults ages 18 to 62 with any type of disability are encouraged to participate. The survey should take about 20 minutes to complete and your responses are anonymous.

[Read more…]

Trump Budget Proposal Cuts Independent Living and Other Vital Programs: Contact the Appropriations Committees!

Last week, the President released his budget proposal for FY 2019 (PDF). Unsurprisingly, the budget proposes steep cuts to the programs people with disabilities rely on, including the Independent Living Program! While it’s important to note that this is only a proposal, and Congress will likely not include many of these proposals in their appropriations bills, it does confirm for us the areas we’ll likely have to continue fighting for. We need to make sure our voices are heard NOW, before Congress begins the FY 2019 appropriations process!

NCIL logo - National Council on Independent LivingFirst and foremost, the budget proposes cutting the Independent Living line item by $5 million, to a total of $96 million.

  • Note: While the HHS budget document presents this as a $4 million cut, this proposal was drafted before the recent budget agreement. Congress has yet to enact a full-year appropriations bill for 2018, so based on the most recently enacted spending levels (FY 2017), this budget proposes a $5 million cut.

NCIL and the Independent Living community have long been urging Congress for a funding increase, because as we all know, the program has been remarkably underfunded for years! With the addition of the fifth core services, Centers for Independent Living (CILs) around the country are working harder than ever with insufficient funding. We need to ensure that this proposal does not make it into Congressional spending bills.  [Read more…]

Please Share Your Experiences with the New 704 / Program Performance Reports by Friday, February 23!

The NCIL Rehabilitation Act / Independent Living Funding Subcommittee is looking for input from CILs and SILCs on their experiences with the new 704 / Program Performance Reports (PPR) and the ACL Reporting system.

To participate, complete the survey online. The survey should take approximately 5-10 minutes.

The deadline to complete the survey has been extended to Friday, February 23, 2018.

The survey is also available in Word and plain text and can be emailed back to

NCIL Condemns House Passage of H.R. 620

The National Council on Independent Living (NCIL) strongly condemns the passage of H.R. 620 by the House of Representatives. Despite fierce opposition from the disability community, the House passed a bill that would roll back our right to access and participate in our communities.

The bill was passed by 213 Republicans and 12 Democrats. We are outraged at these Representatives, who deliberately disregarded the objections of their disabled constituents – and over 500 disability organizations – to pass this discriminatory bill.

NCIL logo - National Council on Independent LivingH.R. 620 is a cruel and misguided bill that would weaken the protections afforded us under the Americans with Disabilities Act and create additional obstacles to seeing our rights enforced. Moreover, it would not stop fraudulent lawsuits or solve the problem the bill’s supporters are claiming to address. Nearly 28 years after the passage of the ADA, the passage of H.R. 620 is a disgraceful confirmation of these Representatives’ skewed priorities.

NCIL Executive Director Kelly Buckland said, “H.R. 620 is a shameful bill, and its passage is something the disability community won’t soon forget. Businesses that are breaking the law – 28 years after the ADA was passed – are more important to our Representatives than their disabled constituents. If this bill becomes law, businesses that have refused to comply with the ADA will have absolutely no incentive to do so until they receive notice. This is a shameful day for the country.”

President of the NCIL Board of Directors Bruce Darling said, “Our members of Congress are supposed to represent all of their constituents, and they’ve proven that this is not the case. H.R. 620 tells disabled people one thing: you are not welcome in my district. And make no mistake; we will remember this and hold our Representatives accountable.”

NCIL is grateful to the Representatives who opposed and spoke out against H.R. 620, and to the advocates who took action on this bill. We strongly urge the Senate to not to take up this bill.