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

Healthcare & Community Living

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: 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 healthsurvey@ku.edu. 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.

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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.

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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 lindsay@ncil.org. 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

Action Alert: Join Tomorrow’s HCBS Call-In Day!

Congress has approved a budget resolution to clear the way to move a COVID-19 relief package forward, and last week House Committees started introducing their bill text and holding mark-ups. The House Energy and Commerce Committee included a 7.35% FMAP (Federal Medical Assistance Percentage) bump for home and community based services (HCBS) for one year. See more information, including the language.

We know this targeted funding for HCBS is critical for keeping disabled people out of congregate settings where COVID-19 is spreading rapidly. We need to make sure this funding remains in the final package!

Take Action

It is urgent that Congress hears from us! Tomorrow, Wednesday, February 17, NCIL and other disability and aging organizations are holding an HCBS Call-In Day. Contact your Representative and tell them how important it is to include dedicated HCBS funding in the COVID-19 relief package!

  • Call your Representative: Call the Capitol Switchboard at (202) 224-3121 (voice) or (202) 224-3091 (TTY). Ask to be connected to your Representative.
  • You can find your Representative’s contact form at house.gov/representatives
  • You can find your Representative’s phone number, Twitter handle, Facebook page, and other contact information on Contacting Congress.
  • You can use Resistbot to turn texts into faxes, mail, or hand-delivered letters by texting “RESIST” to 50409.

A sample script and sample tweets are below – please feel free to personalize.

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CDC Resources for COVID-19 Vaccination and Underlying Medical Conditions

The Center for Disease Control and Prevention’s High Risk Medical Conditions sub-team – part of the Disproportionately Affected Adult Populations (DAAP) Team of the Vaccine Task Force – has the goal of helping to address COVID-19 vaccine implementation in groups with underlying medical conditions at higher risk for severe illness from COVID-19, which includes many disabled people. They have shared the following COVID-19 resources:

  • COVID-19 Vaccination Toolkits – This webpage contains toolkits for audience-specific toolkits for healthcare teams and community administrators, including community-based organizations. The toolkits contain introduction letters, frequently asked questions, slide decks, fact sheets, and more.  These tools can be adapted to your organization’s scope of work and audience.
  • COVID-19 Toolkit for Older Adults & People at Higher Risk – This webpage contains COVID-19 vaccine and disease guidance and tools to help older adults and people at higher risk and those who serve or care for them.​  This toolkit contains FAQs, checklists, factsheets, posters, social media, PSAs, and more.
  • COVID-19 Vaccine – Recently updated COVID-19 vaccine landing page for consumers and clinicians with materials available in English, Spanish, Chinese, Vietnamese, and Korean.

As a reminder, you can also find updates, information, resources and past alerts about COVID-19 at ncil.org/COVID-19.

Congress Passes COVID-19 Bill; Disability Community Needs Continue to be Unmet

Last night, Congress passed a $900 billion COVID-response package and a $1.4 trillion appropriations bill to fund the government through Fiscal Year (FY) 2021, which ends on September 30. The President is expected to sign it today. You can view the full package, called the Consolidated Appropriations Act, 2021 – CAA (PDF), and additional links can be found below.

Since the last COVID-19 relief package in April, people have been struggling to survive during this health and economic crisis. The assistance provided in this bill is one very small step in providing the much-needed relief people and families have been waiting for. However, it fails to provide the broad, meaningful support that’s needed, and fails to respond to the increasingly dire needs of the disability community.

The overall package includes a 3-year reauthorization of the Money Follows the Person (MFP) program, through September 2023. After a long series of short-term extensions, this is great – if long overdue – news. The package also extends the Spousal Impoverishment protections through September 2023. The Independent Living Program is funded at $116.1 million, which is level funding, for Fiscal Year 2021. The COVID provisions include some important assistance, including: funding for a second round of smaller, $600 stimulus payments to individuals; funding for emergency rental assistance and an extension of the Center for Disease Control and Prevention’s (CDC) eviction moratorium through January 31, 2021; a renewal of supplemental unemployment benefits at $300/week this time (instead of the previous $600/week), and an extension of other unemployment benefits from the CARES Act; funding to the CDC and states for vaccine efforts and COVID-19 testing, tracing, and mitigation programs; and funding for schools, transportation, food assistance, small businesses, and more.

However, many crucial needs were excluded from this bill, including funding for home and community based services, additional Medicaid funding, and nearly all of the other priorities the disability community has been pushing for since the pandemic began 10 months ago.

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Action Alert: Federal Funding and COVID-19 Update

The House of Representatives passed a one-week stopgap spending bill introduced by House Democrats earlier this week. The spending bill would extend funding for the federal government by one week, providing another week for Congress to negotiate details of a larger spending package and avert a government shutdown.

The continuing resolution (CR), H.R. 8900, changes the government funding deadline from December 11, 2020 to December 18, 2020. It also provides that one-week extension for several programs, including the Money Follows the Person program and Home and Community Based Services (HCBS) Spousal Impoverishment protections.

The Senate will likely vote on Friday. Assuming the bill passes, this gives Congress a week to iron out the details of a larger spending package to fund the government for the rest of fiscal year 2021. It is unclear whether that week will be enough time to reach an agreement, but many members of Congress seem optimistic.

The extra week also gives Congress time to iron out the details of a much-needed COVID-19 relief package, which Congressional leaders say will likely be paired with the spending package. Just yesterday, a bipartisan group of lawmakers released an outline of their $908 billion proposal (PDF). However, disagreements between Congressional leaders continue over key provisions, including the dangerous liability shield, and state and local funding.

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Contact Congress Today about COVID-19 Relief!

Congress is once again attempting to find some way to pass much-needed COVID-19 relief. Last week, a bipartisan group of Senators and Representatives unveiled a $908 Billion package for a COVID-19 compromise proposal. Read the overview of that plan (PDF). Shortly after, Senator McConnell announced his own plan. Negotiations between both parties and chambers are ongoing, but importantly, neither of the proposals so far addresses the needs of the disability community.

Our Members of Congress need to hear from us again. They need to hear how critical it is to address the needs of their disabled constituents in this COVID-19 package. In particular, they need to include targeted funding for home and community based services (HCBS) to keep people out of congregate settings where COVID-19 is spreading rapidly; an FMAP increase to ensure Medicaid and state government can meet the needs of their residents; and permanent reauthorization and funding for the Money Follows the Person (MFP) program to help get people out of dangerous congregate settings where COVID-19 is rampant. They also must NOT include the dangerous liability shield included in the Senate’s HEALS Act that would protect businesses (including schools, medical providers, and more) from being held responsible for harm they cause in almost all circumstances. You can see a longer list of priorities in this letter from CCD (PDF), of which NCIL is a member.

TAKE ACTION: Contact your Members of Congress to tell them we need a COVID-19 relief bill, and we need it to address the needs of the disability community!

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