the advocacy monitor

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

Organizations: Sign NCIL’s Petition to Help Protect Access to Opioids for People with Chronic Pain

To address the opioid crisis, several policies have been enacted that limit prescriptions. As a result, people in pain continue to face barriers to accessing medication and managing their pain. Our community is disproportionately affected by these policies because many people with disabilities live with serious or chronic pain.

In November 2022, the Centers for Disease Control and Prevention (CDC) issued a new updated Guideline for Prescribing Opioids, warning policymakers that limits on prescribing have caused harm to people living with pain.

Despite the CDC’s 2022 guidance, many who have relied on opioid medications, often for decades, continue to see their medication forcibly reduced or eliminated. Some have been denied medical care altogether. Physicians remain under pressure to reduce or discontinue long-term prescriptions, even for people who benefit from the medication. The harm caused by these policies, now documented in numerous studies, has ranged from increased pain to loss of function, to suicide or resorting to illegal substances.

The harm cannot be undone, but action now can stop further harm.

Therefore, NCIL has drafted two new letters to the federal government.

Our first letter will be sent to Congressional leadership, leaders of key committees, and sponsors of key bills.

[Read more…]

NCIL Joins Launch of Vaccination Campaign

Prioritizing your health this cold and flu season? You’ve got this.

The National Council on Independent Living (NCIL) is excited to announce that we are part of the You’ve Got This (yougotthis.usaging.org) campaign to vaccinate older adults and people with disabilities. Launched by the USAging-led Aging and Disability Vaccination Collaborative (usaging.org/advc) during cold and flu season, NCIL is part of a fall push to connect older adults and people with disabilities to COVID-19 and flu vaccines. Led by USAging and funded by the U.S. Administration for Community Living, the Aging and Disability Vaccination Collaborative grants are helping communities stay healthy by focusing on those who need it most—older adults and people with disabilities, particularly those from historically marginalized and underserved communities in which vaccination rates are low.

As part of its grant, NCIL will share vaccination resources and information to connect people with disabilities and older adults to COVID-19 and flu vaccines. Check out NCIL’s COVID-19 Information and Resources Page (ncil.org/covid-19) and social media accounts to view national and local resources.

Find a local community partner for in-person vaccine clinics near you, help with transportation, in-home shots, vaccine awareness and education, and healthcare consultations at yougotthis.usaging.org.

Logo of The Aging and Disability Vaccination Collaborative powered by USAging. A man in a brown sweater in a wheelchair. A button that reads "You've got this. We've got you."

CIL ADVC Grantees:

We want to hear from you and highlight the efforts your Center for Independent Living (CIL) and community are offering!

Is your CIL hosting a vaccine clinic, vaccination education event, or other grant activity? Let us know!

[Read more…]

HHS Issues a Historic Notice of Proposed Rulemaking (NPRM) on Section 504 of the Rehabilitation Act of 1973

Section 504 The Rehabilitation Act of 1973 protects people from discrimination and prevents discrimination in programs that receive federal funding.

Yesterday, HHS Secretary Xavier Becerra hosted a press conference to announce a rule proposed by the HHS Office for Civil Rights that would update these regulations. This is the first time these critical regulations will have been updated since they were originally signed in 1977 after 4 years of tireless advocacy and a 28-day protest led by disability civil rights leaders.

[Read more…]

Let’s Commemorate the Rehabilitation Act of 1973: The Power of Independent Living & Employment

September 19, 2023; 3:00 – 4:00 p.m. Eastern Time

The month of September marks the 50th anniversary of the passage of the Rehabilitation Act of 1973 (Rehab Act). As we commemorate the milestones that have been achieved, join the Disability Employment TA Center for a webinar that will focus on the power of the Independent Living movement in advancing employment. The National Council on Independent Living (NCIL) and the RAMP Center for Independent Living will jointly reflect on successful strategies they adopted over the years to move people with disabilities out of institutions and to help them obtain and retain competitive, integrated employment.

Read more and register: https://bit.ly/3Zc4h6D

Disability Employment TA Center Logo

2023 Annual Conference Photos Now Available!

We are very happy to announce that the pictures from NCIL’s 2023 Annual Conference on Independent Living are now available on Flickr.

To download a photo for your records, click on the picture, then click the white downward arrow beneath it. Select the size you want, then save it to your device.

If you would like a specific photo added to the captioned collection, please provide a description of photo in the comments or email [email protected] with the link and a description. You can comment on photos using a Flickr / Yahoo account.

Special thanks to our photographer, Andrew Robertson! Read more about Andrew at https://bit.ly/45n3diH.

CMS Request for Information About the Importance of Home Health Aides

The Centers for Medicare & Medicaid Services (CMS) has provided an important opportunity for beneficiaries, and their advocates, to convey experiences and concerns about the devastating lack of access to Medicare-covered home health aides, especially for individuals living with chronic and longer-term impairments.

In the recent 2024 Notice of Proposed Rule Making (NPRM) for Home Health Care, CMS issued a Request for Information (RFI) seeking responses to 8 questions about access to Medicare-covered home health aides. 

Beneficiaries and advocates must weigh in and discuss the critical need for availability of aide services and the consequences when qualifying coverage is not available. We ask that you please consider responding to the Home Health Aide RFI with your own stories, concerns, and experiences.

Deadline: August 29, 2023; 5:00 p.m. Eastern.

To submit your comments:

  1. Go to https://bit.ly/45AgRid
  2. Click on the blue “Comment” box in the upper left corner of the screen;
  3. Under the “Commenter’s Checklist” section, there will be a “Comment” text box section, this is where you would input a short introductory paragraph stating who you are and what your comments focus on.
  4. Under the “What is your comment about?” drop-down menu, select the “Health Care Professional/Association – Nursing Aide” option;
  5. Under the “Attach Files” section, this is where you will upload a pdf version of your letter;
  6. Type in your email address under the “Email Address” section;
  7. We recommend checking the box to “Opt to receive email confirmation or submission and tracking number?”
  8. Under the “Tell us about yourself” section, select whether you’re submitting as an individual or as an organization, and fill out the corresponding requested information;
  9. Check the “I’m not a robot” box; and
  10. Click “Submit Comment”.

Give Aid to CILs and SILCs Affected by Disasters

As you have likely seen, natural disasters can occur without warning and affect entire populations. Centers for Independent Living, Statewide Independent Living Councils, and people with disabilities in Vermont and Hawaii have recently been affected by flooding and wildfires. Recently, massive rains destroyed Vermont Center for Independent Living and they are currently working to rebuild and provide services once again for individuals with disabilities. Numerous people have been affected by the Hawaii wildfires, and we need to work together to bring them some relief. NCIL will be reaching out to Centers in Hawaii to learn how to best help and allocate funding.

[Read more…]

Resources Following Listening Session on Medicaid Unwinding / Renewals

Thank you to everyone who attended NCIL’s Listening Session on Medicaid Unwinding / Renewals. If you were not able to attend and would like to provide feedback, please complete our survey (https://bit.ly/3shkuuP) or email me at [email protected]. Feedback will be compiled and shared with the Administration for Community Living (ACL).

Additionally, below are some resources shared with NCIL from the Administration for Community Living (ACL) and the Centers for Medicare & Medicaid Services (CMS) on this issue that you might find helpful.

[Read more…]

Action Alert: Keep our Budget Intact!

Call your Representatives in the House and tell them not to cut funding for the Independent Living Program.

The Senate’s draft budget came out at level funding for the Independent Living Program at $128 million. We need you to call your Representatives today and tell them not to cut IL funding.

Read more about the Senate’s draft budget: https://bit.ly/47bi6pG

We particularly need you to call members of the House Committees on Appropriations (https://bit.ly/475VczP). 

To find your Representative’s phone number, visit the House Directory (https://www.house.gov/representatives).  

5 for 5 Logo: Fund Centers for Independent Living - 500 Million; 5 Core Services

Funding Available to CILs for Community Vaccination Promotion Efforts!

There is still time to apply!

Application deadline: August 11, 2023.

With the goal of helping older adults and people with disabilities stay healthy, the U.S. Administration for Community Living has funded USAging to launch the Aging and Disability Vaccination Collaborative to fund local activities that encourage vaccination against COVID-19 and the flu for older adults and people with disabilities.

AAAs, Title VI programs and other organizations from across the aging and disability networks will receive funding to conduct a range of vaccination promotion activities, including:

  • hosting community vaccine clinics,
  • providing in-home vaccinations,
  • providing transportation to vaccination sites,
  • providing scheduling assistance and supportive services to those desiring a vaccination,
  • conducting outreach and education to older adults and people with disabilities,
  • and more!

Eligible Organizations

Local organizations, including Area Agencies on Aging, Title VI programs, Aging and Disability Resource Centers/No Wrong Door systems, Centers for Independent Living and a broad range of aging and disability organizations, may apply to receive funding at www.usaging.org/advc.

More Information

To learn more, see the Frequently Asked Questions or watch What You Need to Know About Applying for Aging and Disability Vaccination Collaborative Grants.

Still have questions? Send an email to [email protected].

Blue and purple logo with the words Aging and Disability Vaccination Collaborative powered by USAging.

Blue and purple logo with the words Aging and Disability Vaccination Collaborative powered by USAging.