the advocacy monitor

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

Healthcare & Community Living

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 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.

[Read more…]

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.

[Read more…]

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.

[Read more…]

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!

[Read more…]

COVID-19 Updates

COVID-19 rates are once again surging across the country. Infection rates and hospitalizations are rising. The US has surpassed 11 million cases and has reached nearly 250,000 deaths. Cases and deaths in congregate settings are, once again, rising disproportionately, with a recent report finding COVID-19 cases in nursing facilities have risen fourfold in many states in this latest surge; and we know people in other congregate settings are facing the same dire situation.

Congress is still stalled on their COVID-19 relief efforts. While both the House and the Senate listed passing another COVID-19 relief bill as a post-election priority, major disagreements on how to move forward remain. With the election behind us, we will need to ramp up our advocacy efforts once again to get Congress to pass the pandemic relief we so desperately need. 

President-elect Biden and Vice President-elect Harris, however, have gotten to work. Last week they named the members of their coronavirus task force, who will work to develop a plan for fighting COVID-19 under the new Administration. See the list of members and brief descriptions. They also launched their transition website, buildbackbetter.com, which includes an outline of their plan to beat COVID

Another announcement that came out last week is Pfizer and BioNTech’s news that their vaccine candidate is showing 90% effectiveness after an initial analysis. Then, this week, Moderna also announced their vaccine is over 90% effective. Both companies expect to be ready to apply to the Food and Drug Administration (FDA) for emergency use authorization by the end of the month. Per their announcements, Pfizer expects to have 50 million doses available globally by the end of the year (each regimen requires two doses) and up to 1.3 billion doses available during 2021; Moderna expects to have 20 million doses ready to ship in the US by the end of 2020 and estimates it can make 500 million to 1 billion doses next year. While this is great news, experts are cautioning that it will still take many months before the vaccine is widely available, and there are still some questions remaining, including how long immune protection lasts, how effective it will be for different groups of people (including immunocompromised people), and how distribution will play out. That said, this is incredibly promising, and there are currently two other vaccine candidates still in trials that expect to have results as early as next month.

We will continue to keep you updated as new information becomes available or as advocacy is needed.

Information Alert: Affordable Care Act Heads Back to Supreme Court Today

Today the Supreme Court will hear oral arguments in the lawsuit seeking to invalidate the Affordable Care Act (ACA). This case, California vs. Texas, argues that the ACA’s individual mandate is unconstitutional and puts the entire ACA in jeopardy of being struck down. 

NCIL is closely following this. The ACA has been vital to millions of people across the country, including the disability community. Because of that, NCIL has consistently fought efforts to weaken and get rid of the ACA. NCIL, along with nearly 20 other national disability rights organizations, filed an amicus brief opposing these efforts to invalidate the ACA. In it, we argued how the ACA has expanded healthcare access and coverage for people with disabilities and society as a whole, including how the ACA’s changes to Medicaid have increased and improved access to healthcare and long term services and supports (LTSS). View the amicus brief (PDF).

Striking down the ACA would be devastating, especially for people with disabilities. And the thought of taking healthcare away from millions of people is even more unconscionable as we deal with the devastation resulting from the COVID-19 pandemic. That said, we do not expect to have a ruling for several months, and we plan to continue fighting. We will continue updating you with information as it becomes available, as well as ways that you can take action. 

In the meantime, you can follow some of the today’s action and join in on social media with the hashtags #ProtectOurCare and #SaveTheACA. Additionally we have extended our deadline to share your stories about how the ACA has helped you or how overturning the ACA would be harmful. Please share your stories with by using this online form or emailing comments@ncil.org. We are extending the deadline for this request to Sunday, November 15, 2020.

See our previous alert for information about some of the ways the ACA has helped people.

Deadline Extended to Share Your Story and Help Us Save the Affordable Care Act!

Earlier this week, the Senate voted to confirm Amy Coney Barrett’s appointment to the U.S. Supreme Court. NCIL and over 50 other national, state, and local disability rights organizations sent a letter (PDF) urging the Senate to oppose her nomination. NCIL opposed her nomination due to her history of decisions that have harmed the disability community, and in particular her vocal opposition to the Affordable Care Act (ACA).

Despite her confirmation, NCIL will continue to fight to save the ACA. You may remember that NCIL, along with several other disability organizations, filed an amicus brief (PDF) in the court case that will soon be heard by the Supreme Court, and we will continue to advocate. The disability community played a huge role in saving the ACA in 2017, and we must do the same again. We will continue to fight, and we need your help. 

Share Your Story

We need your stories of how the ACA has helped you, and how overturning the ACA would be harmful. Please share your stories with by using this online form or emailing comments@ncil.org. We are extending the deadline for this request to Sunday, November 15, 2020. See below for information about some of the ways the ACA has helped people.

[Read more…]