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

Participants Needed: 2021 National Survey on Health and Disability

March 19, 2021 By

Share how access to health care, insurance and the COVID-19 pandemic affects your life!

The NIDILRR-funded Collaborative on Health Reform and Independent Living (CHRIL) at the University of Kansas is looking for adults with disabilities to complete an online survey about health insurance, health care access and the current pandemic. Whether you have private insurance, insurance from an employer, TRICARE, Medicaid, Medicare, or no insurance right now, please complete the survey.

  • Adults, 18 and over, with any type of disability, chronic illness/disease, mental or physical health condition are encouraged to participate
  • The survey should take about 20 minutes to complete
  • Responses are anonymous
  • The survey may look familiar to you. It was posted in 2018 and 2019, and is being posted for a third time now. We welcome participation from those who completed it before and those who have never done it before.

To complete the survey, go to: http://tinyurl.com/NSHD2021

Whether or not you complete the survey, you can choose to enter a drawing to win one of fifteen $100 gift cards. Weekly drawings will happen until the survey closes April 30th, 2021. If you prefer to take the survey over the phone or have any questions about participating, please call toll-free 1-855-556-6328 (Voice/TTY) or email [email protected]. Thank you!

Filed Under: Healthcare & Community Living

Information Alert: ASPR Speed Monoclonal Antibodies (mAbs) Initiative / Program to Priority Settings

March 18, 2021 By

In an effort to make sure NCIL members have as much information about COVID-19 as possible, we want to share some information about a recently approved treatment. The Food and Drug Administration (FDA) has approved monoclonal antibody treatments (mAb) for emergency use to treat people with mild to moderate COVID-19. This treatment is intended to reduce the risk of getting sicker, requiring hospitalization, or dying from COVID. To be eligible for this treatment, a person must:

  • have tested positive for COVID-19
  • have a mild to moderate case of COVID-19
  • be 12 years of age or older
  • be at high risk for progressing to severe COVID-19 and / or hospitalization
  • have had symptoms for 10 days or less

Antibodies are something the body makes to fight infections. Monoclonal antibodies are made in a lab to fight a specific infection. The monoclonal antibodies used in these treatments were developed specifically to fight COVID-19. The monoclonal antibodies are given by infusion.

Filed Under: Healthcare & Community Living

Make Nominations for the NCIL Board of Directors by May 10, 2021!

March 16, 2021 By
2021 Annual Conference on Independent Living Logo - LIBERTY, INDEPENDENCE, FREEDOM, EQUITY. Presented by NCIL. Graphic features a line art drawing of three pulmeria flowers.

Dear NCIL Members:

NCIL is planning to hold virtual elections for our Governing Board positions this year. NCIL members have an opportunity to nominate an individual to run for each of the following positions on the NCIL Board:

If you or someone you know would be interested in running for the NCIL Board, please fill out the nomination form.

Please carefully review the position descriptions and memorandum, as it will help in considering potential nominees. Also, make sure to share these resources with the individual you are nominating so that they have a clear understanding of what will be expected should they be elected.

[Read more…]
Filed Under: Uncategorized

American Rescue Plan Brings Welcome Relief to the Disability Community

March 12, 2021 By

This week Congress passed the American Rescue Plan, a $1.9 trillion COVID-19 relief plan. You can view the full package online and additional links can be found below.

Since the beginning of the pandemic, the disability community has been disproportionately impacted by COVID-19. After a year of tireless advocacy – a year of repeatedly calling attention to the needs of our community – Congress has finally heeded our calls to increase funding for the home and community based services (HCBS) that are more critical than ever right now. The final package includes a 10% FMAP (Federal Medical Assistance Percentage) bump for HCBS, which amounts to $12.67 billion in dedicated funding from April 1, 2021 to March 31, 2022. While we know this funding is only some of what our community needs right now, it is an incredible victory that will help more of our people survive this pandemic. Thank you for your relentless advocacy – that is what led to this success.

In addition to the additional HCBS funding, this package includes funding for housing and homelessness assistance, education, public transportation, vaccinations and testing, food assistance, another round of stimulus payments (at $1400), small business support, and more. It also expands and extends unemployment benefits, provides incentives for states that did not expand Medicaid, expands access to health coverage, and extends and expands the paid sick and FMLA leave from the Families First Act. The final package does not include the $15 minimum wage bump or the phase-out of 14(c) certificates that was included in the House version.

[Read more…]
Filed Under: Healthcare & Community Living

Recruiting CIL Staff for Innovative Pilot Training Program

March 11, 2021 By

Help us empower people with disabilities in making health insurance choices!

The American Association on Health and Disability (AAHD) and our partners, IL NET T&TA Center for Independent Living at Independent Living Research Utilization (ILRU), National Council on Independent Living (NCIL), and the Association of Programs for Rural Independent Living (APRIL), are recruiting 15 CIL Staff volunteers to pilot a training curriculum that teaches CIL Staff how to assist people with disabilities make health insurance choices. The training will be conducted using Zoom.

[Read more…]
Filed Under: Healthcare & Community Living

Information Alert: Executive Order on Promoting Additional Access to Voting

March 11, 2021 By

This past Sunday, President Biden signed a new voting access executive order entitled “Executive Order on Promoting Additional Access to Voting”. The Executive Order was released to coincide with the 56th anniversary of “Bloody Sunday,” when civil rights activists, beginning their march from Selma to Montgomery, were brutally beaten by State troopers while crossing the Edmund Pettus Bridge.

The executive order (EO) aims to expand access to voting in a number of ways, including:

  • Giving the heads of every Federal agency 200 days to evaluate and create a plan to promote voter registration and voter participation (Section 3);
  • Requiring the Office of Management and Budget (OMB) to coordinate efforts to improve and modernize Federal websites and digital services that provide election and voting information, including ensuring accessibility to people with disabilities and people with limited English proficiency (Section 3); and
  • Requiring the General Services Administration (GSA) to coordinate with the Election Assistance Commission (EAC) and other agencies, as well as seek input from affected stakeholders (including civil rights advocates, disability rights advocates, and Tribal Nations) to modernize and improve the Vote.gov (Section 5) website.
[Read more…]
Filed Under: Disability Voting Rights

IL-NET T&TA Center Presents… A National Webinar – CIL Pandemic Response: How CILs Can Initiate Emergency Relocations and Transitions During the COVID-19 Pandemic

March 4, 2021 By

March 11, 2021; 3:00 – 4:30 p.m. Eastern

Register online

The COVID-19 pandemic has highlighted what IL advocates have known for years – that nursing homes and other congregate settings are not safe places for people with disabilities.  According to CMS data, over 128,000 nursing home residents have died of COVID-19.  We know this number is likely much higher since the CMS classification of nursing homes does not include other institutions and congregate settings, and there are reported instances of states suppressing data and nursing home underreporting. 

Thankfully CILs have been doing what they do best: getting people out of institutions and back to the community. Of course there are daunting challenges to this work during the pandemic, especially due to in-person visits being prohibited or restricted for residents in congregate settings.

It is possible, however, and we must do what we can to get people out of institutions. Join us on March 11 to learn how two CILs have accomplished emergency relocations and transitions during COVID-19.  We’ll share the activities, partnerships, advocacy, and funding that made it possible.  

Registration Fee: This event is free-of-charge.

Target Audience: Staff and board members of Centers for Independent Living. Some of the systems level responses may also be of interest to staff and members of Statewide Independent Living Councils.   

[Read more…]
Filed Under: Independent Living & The Rehabilitation Act

Free Resource for Youth & Emerging Leaders with Disabilities Interested in Nonprofit Leadership

March 3, 2021 By
Out of the Margins Logo

Out of the Margins is a free, accessible resource available to any emerging leaders, teaching the fundamentals of nonprofit leadership. Out of the Margins provides tutorials on core subject matters that are fundamental to leading not-for-profit organizations including financial oversight, conflict resolution, advocacy v. lobbying, grants and grant writing, annual reporting, overseeing operations, understanding boards and committees, and more. Emerging leaders can review the materials at their own pace and choose the subjects that are most important to them.

Each subject is taught by a different subject matter expert. All experts are disabled people with diverse backgrounds from across the nation. Out of the Margins is ever evolving and growing to meet the needs of emerging leaders. 

Out of the Margins is a project of the Topeka Independent Living Resource Center, Inc. To learn more about Out of the Margins, please visit outofthemargins.org.

Interested in scheduling a training for your organization on how to use Out of the Margins to help your youth & emerging leaders? Contact us at [email protected].

Filed Under: Uncategorized

Elevate Blog: Can You Run for Office if You’re On Social Security?

March 1, 2021 By

One of the most common questions we receive about running for office is: “I receive Social Security benefits. Can I run for office?” The Social Security Administration (SSA) does not have any official guidance on their website about how campaigning or holding office can impact eligibility.

NCIL reached out to SSA last fall to ask them about whether running for office can affect someone’s Supplemental Security Income (SSI) payments or Social Security Disability (DIB) benefits. SSA evaluates someone’s eligibility on a case-by-case basis. However, SSA does say that campaigning or holding elected office may impact your eligibility for SSI or DIB. We have included the full answer below. Their answer goes into more detail about how campaigning or holding office can impact eligibility for benefits. If you have any further questions, we recommend that you reach out to a local certified benefits planner. Your local center for independent living can refer you to a local certified benefits planner. Find my local center for independent living.

Answer from the Social Security Administration:

“We are unable to provide you with a definitive answer because disability determinations are necessarily fact-specific and must be performed on a case-by-case basis.  However, we can offer you general information about how such activities may affect eligibility or entitlement to benefits.

First, it is important to note that our rules require beneficiaries to inform the Agency of events that may affect their disability status.  Such events include a return to work, an increase in hours worked, or an increase in earnings received.  Holding an elected office, even if part-time or unpaid, is work that the beneficiary should report.  Furthermore, our rules also require a beneficiary to report medical improvement that allows them to return to work.  Thus, if the beneficiary’s ability to campaign correlates with medical improvement, he or she should report that medical improvement to us.  This information will generally require the agency to initiate a review to evaluate whether the beneficiary continues to be disabled under the Social Security Act.

Under the Act, an individual who engages in substantial gainful activity is not disabled. Accordingly, if a beneficiary’s income from an elected position qualifies as substantial gainful activity, then that beneficiary is likely no longer disabled under the Act, regardless of the nature of the work.  In addition, earnings from political activity are not typically excepted from SSI income and resource evaluations.  Thus, earnings from such political work that fall short of substantial gainful activity may still reduce or eliminate eligibility for SSI.

Regardless of earnings, a beneficiary’s demonstrated ability to work, or perform activities similar to work, may show that the beneficiary no longer meets our standard for disability.  Whether campaign activities or the duties performed in elective office demonstrate that the beneficiary is no longer disabled is a fact-specific inquiry, and we are not able to provide you a definitive answer in the abstract.  We would have to consider whether the beneficiary’s specific campaign or office activities, among other factors, demonstrate that he or she has the functional ability to work.  If he or she does, it is likely the Agency will find that the beneficiary is no longer disabled.  Thus, even part-time or unpaid work may result in a termination of disability benefits.

For the reasons discussed above, campaigning for or holding elective office, regardless of whether such position is full-time or paid, may affect a beneficiary’s entitlement or eligibility for both SSI and DIB.  As noted above, we would evaluate the impact of those activities and any earnings on a case-by-case basis to determine the impact on any particular beneficiary.”

Filed Under: Uncategorized Tagged With:

Add Your Organization as a Signatory to NCIL’s Chronic Pain Advocacy Letter to Congress

March 1, 2021 By

In 2019, the Centers for Disease Control and Prevention (CDC) issued warnings to policymakers that a range of policies aimed at addressing the opioid crisis through limiting prescriptions—especially policies based on misinterpretations of its 2016 prescribing guideline—are increasing barriers and causing harm to people living with pain. Many who have relied on opioids, often for decades, are seeing their medication forcibly reduced or eliminated; in increasing numbers, the same group of people is being denied medical care altogether. The Food and Drug Administration concurrently issued an alert about the dangers of abrupt opioid cessation.

Despite these safety alerts and our success in 2019 as a disability community in preventing federal policies that create inflexible limits from passing into law, several soon-to-be-introduced bills double down on stringent, one-size-fits-all limits.

Because many people with disabilities live with serious or chronic pain, our community is disproportionately affected by these policies. The harm caused by these policies, which may range from increased pain, to loss of function, to suicide or resorting to illegal substances, has now been documented in numerous studies.

Therefore, NCIL has drafted a letter, which will be sent to Congressional Leadership, leaders of key committees working on these issues, and sponsors of key bills. We are writing to ask Congress not to contravene the warnings of our public health agencies and to await the outcome of ongoing efforts by the CDC and the FDA (in consultation with the National Academy of Medicine) in updating prescribing guidelines for acute and chronic pain. 

As organizations that advocate for the rights of people with disabilities, we hope you will add your organization’s name as a signatory to this letter. Nearly 100 organizations signed a similar letter in 2019, which greatly enhanced our advocacy efforts. You can add your organization at the link above or by emailing [email protected]. The deadline to sign on is Tuesday, March 9, 2021.

Additional Information

The most problematic policies are based on misapplication of the CDC’s Guideline for Prescribing Opioids for Chronic Pain. These include:

  • Strict limits on opioid prescribing for acute pain, often of 3-7 days
  • Applying dosage guidance designed for opioid naïve individuals to people currently taking opioids and the physicians who care for them
  • Mandatory or abrupt tapering off opioids and patient abandonment
  • Overreach to unintended populations

Additional information on each of these can be found in the letter.

The CDC and FDA recently issued several clarifications as a result of the harms being caused to people with chronic pain:

While we have significantly decreased access to opioids, there has not been a responsive increase in access to or coverage of non-opioid treatments.  One of the bills addressed in the letter – the NOPAIN Act – which we support, attempts to expand such treatment. Nevertheless, it is insufficient, as people with pain need access to the full spectrum of available modalities of pain treatment.

As organizations advocating for the rights of people with disabilities, we hope you will join these efforts to call on Congress to focus on the needs of people with chronic pain.

Further Resources

Filed Under: Healthcare & Community Living
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