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

Healthcare & Community Living

Share Your HCBS Story with Us

Congress is currently considering a huge investment in home and community based services (HCBS). This investment could go a long way toward making community living for all a reality – but it’s not a done deal yet.

Disabled people have the right to live in our communities with control over our lives, including our supports and services. To that end, the National Council on Independent Living (NCIL) has been working closely with Congress, the Administration, and partner organizations in DC to make sure this critical investment happens – and to make sure it is done in the most thoughtful and inclusive way possible.

As part of these efforts, NCIL is looking for stories to share with Congress about the importance of HCBS, including (but not limited to):

  • Stories from people whose HCBS have enabled them to remain in their homes and / or participate more fully in their community
  • Stories from people who are on the waiting list for HCBS, and how not having these services has impacted their lives
  • Stories from people who have been able to transition out of institutions / congregate settings because of HCBS

Our goal is to collect these stories and send them to Congress by Thursday, June 10. Please submit stories through the online form or by emailing [email protected] by Wednesday, June 9 at Midnight. If you submit your story by email, please include the following information:

  • Your name (you can write “Anonymous” if you do not want to share your name):
  • The city you live in (optional):
  • The state you live in:
  • Your story, in 1-3 paragraphs:
  • May we contact you if necessary for additional follow-up?

[Sign Your Support / Solidarity] Opposition to CDC Mask Guidelines

The Partnership for Disaster Strategies has put out a statement in opposition to the CDC’s recent guidance for fully vaccinated people. In it, they express their confusion and outrage at the recommendation that fully vaccinated people “no longer need to weak masks, avoid crowds or large gatherings, isolate after exposure, or get tested unless they develop symptoms”, and note that the result will be to spread the disease amongst unvaccinated, which can lead to new variants and vaccine resistance. The statement also notes that the guidance disregards people at high-risk and many people with disabilities, putting us at even higher risk.

The Partnership is looking for organizations and individuals to sign on in support / solidarity before they share it widely and publicly. NCIL has signed on, and if can sign your name and / or organization on as well at

If you need this form in alternative format, please contact Priya Penner at [email protected].

Facebook Live Event on mAbs: New Resource from the Federal COVID-19 Response Team

On Wednesday, May 26, 2021, at 10:00 a.m. Eastern, the Federal COVID-19 Response Team will host a Facebook Live event focusing on the updated National Institutes of Health guidance on Monoclonal Antibodies (mAbs). The event will feature Dr. H. Clifford Lane (NIH), Dr. Raj Gandhi (Harvard), and Ms. Cecily Waters (US Department of Health and Human Services), who will discuss the updated recommendations from the NIH COVID-19 Treatment Guidelines Panel.

You may remember we previously sent information about monoclonal antibody treatments, which were approved earlier this year by the Food and Drug Administration (FDA) for emergency use to treat people with mild to moderate COVID-19. Those approvals have since been revised by the FDA to expand the list of conditions that place people with mild to moderate COVID-19 at increased risk for disease progression. This webinar will address that revision and the updated NIH guidance.

To participate, visit The event will have captions. If you have any questions, you can contact [email protected].

You can also find more information about this and other updates at

Information Alert: COVID-19 and Vaccine Survey Project Findings

The American Association on Health and Disability (AAHD) has released two research products that resulted from the AAHD Vaccine Hesitancy Survey Among Adults with Disabilities, a rapid, real-time online study of the perspectives of adults with disabilities on the COVID-19 Vaccine. Visit to view the Vaccine Hesitancy Summary of Findings Report and the COVID-19 Vaccine and Disability Survey Vaccine Hesitancy Among Adults with Disabilities Research Report.

Paid Lex Frieden Internship Openings Available at Anthem

Anthem has 30 openings for paid internships this summer for undergraduate / graduate students. 

2021 summer interns will be integral to Anthem’s teams in a variety of roles. Interns should be prepared for a fast-paced, team environment in an internship providing a robust developmental experience and exposure to various areas of healthcare including policy, advocacy, sales, IT, communications, clinical and management support, and outreach and marketing. As part of this paid internship experience, interns are responsible for supporting their respective teams and contributing towards Anthem’s broader goals. Students with disabilities are strongly encouraged to apply.

To apply, candidates can check out the Anthem career site @ and search for Lex Frieden Internship – 0141400.

[Read more…]

Participants Needed: 2021 National Survey on Health and Disability

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:

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!

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

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.

American Rescue Plan Brings Welcome Relief to the Disability Community

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…]

Recruiting CIL Staff for Innovative Pilot Training Program

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…]

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

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