the advocacy monitor

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

Healthcare & Community 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 ( campaign to vaccinate older adults and people with disabilities. Launched by the USAging-led Aging and Disability Vaccination Collaborative ( 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 ( 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

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…]

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
  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”.

Action Alert: Tell Congress Cuts to Medicaid Are Off the Table!

Join the Disability and Aging Collaborative #SaveMedicaid Online Rally today, May 24; 4:30 – 5:30 p.m. Eastern.

Thank you to everyone who attended NCIL’s rally and call to action yesterday. We need to continue the momentum!

Medicaid is an essential program that 88 million Americans rely on for their healthcare, including 54 million older adults, children, and people with disabilities – but it’s at risk!

We are asking you to contact your House member with the following message: 

  1. No cuts to Medicaid. 
  2. Keep Medicaid funding and work requirements for SNAP and Medicaid eligibility OUT of debt ceiling negotiations. 

To find your representative’s phone number visit the House Directory.

Today’s Disability and Aging Collaborative Online Rally

  • May 24, 2023; 4:30 – 5:30 p.m. Eastern.

Medicaid work requirements and program cuts would take care away from millions of people, including disabled people, veterans, and older adults. The Save Medicaid Online Rally is an opportunity for supporters to learn more about the fight over Medicaid – and to take action to protect it.

Please share the event with your supporters and networks. We hope you join us there!

Questions on Lobbying vs. Advocacy?


Joint Statement from the National Council on Independent Living (NCIL) and the Association of Programs for Rural Independent Living (APRIL)

Tell Congress Medicaid Cuts are off the table!

The U.S. House of Representatives passed H.R. 2811, the “Limit, Save, Grow Act of 2023” on April 26, 2023. This bill would cause deep cuts to discretionary spending. The bill would suspend the debt limit through March 31, 2024, or until the debt increases by $1.5 trillion, whichever comes first. 

This bill would impose radical work requirements for Medicaid enrollees ages 19 to 55 in exchange for lifting the debt ceiling, resulting in millions of people losing Medicaid benefits, according to the Center for Budget and Policy Priorities. It would also expand work requirements for the SNAP and TANF programs.  

People with disabilities rely on Medicaid home and community-based services (HCBS) to live independently in their communities and NOT IN Nursing Homes. Throughout the United States, more than 650,000 people are stuck on HCBS waiting lists and are not getting the services they need. Cuts to Medicaid and Work Requirements causing more red tape would make it even harder for people with disabilities, their families, and the workers who support them to access the care they need to survive. 

[Read more…]

Rally to Protect Medicaid: Tell Congress Medicaid Cuts and Work Requirements are OFF THE TABLE!

NCIL and other organizations have been meeting with Congressional offices telling them to back off Medicaid, but we need your help!

The U.S. House of Representatives’ bill passed on April 26 includes radical work requirements for Medicaid enrollees ages 19 to 55 in exchange for lifting the debt ceiling.

We need to tell Congress to keep Medicaid OUT of debt ceiling negotiations.

People with disabilities rely on Medicaid home and community-based services (HCBS) to live independently in their communities and NOT IN NURSING HOMES!

Cuts to Medicaid and the proposed work requirements would cause more red tape and would make it even harder for people with disabilities, their families, and the workers who support them to access the care they need to survive.

Rally to Protect Medicaid

NCIL will also be hosting an online rally on Tuesday, May 23 from 2:00 – 3:00 p.m. Eastern.

CART and ASL will be provided. This event will also be recorded and posted to the On-Demand section of NCIL’s website ( If you need any additional accommodations, please contact Jenny Sichel at [email protected].

Biden-Harris Administration Announces Sweeping Set of Executive Actions to Improve Care

Today, NCIL Executive Director Theo Braddy joined President Biden as he signed an Executive Order with over 50 directives aimed at increasing support for care workers and family caregivers. These orders included:

  • Making child care and long-term care more affordable and accessible for people with disabilities, older adults, and families;
  • Providing veterans with better access to home-based care;
  • Supporting family caregivers; and
  • Improving the job quality for long-term care workers.

For more information on the Executive Order, see the full Fact Sheet (

NCIL commends the Biden administration for its commitment to improve care for people with disabilities. We look forward to continuing to work with this Administration and advocating for access to consumer controlled personal care programs and home and community-based services for people with disabilities.


  • NCIL Executive Director Theo Braddy, a Black man with a salt and pepper beard and a power wheelchair sits amongst guests at the outdoor signing ceremony.
  • Theo Braddy sits to the left of President Biden as he signs the Executive Order from a table with the Presidential seal at the front.
  • President Biden turns toward Theo Braddy during the signing of the Executive Order. A crowd of approximately 14 people stand behind the President observing.
  • Theo Braddy shakes President Biden’s hand.

ACL Webinar – Strengthening Advocacy in the HCBS Settings Rule: Getting the Services You Need from the Waiver

ACL invites you to a webinar in their series on strengthening advocacy in the Home- and Community-Based Services (HCBS) Settings Rule, Getting the Services You Need from the Waiver, on Wednesday, December 14, 2022.

The HCBS Settings Rule can improve community-based services and supports for people with disabilities and older adults for decades to come. This webinar will provide insight into one of the main strategies stakeholders can use to get the promise of the Rule into everyday life: influencing the services that are included in the waiver application.

[Read more…]

Participants Needed: 2022 National Survey on Health and Disability (NSHD)

Share how access to health care and the COVID-19 pandemic have affected your life.

The University of Kansas Institute for Health & Disability Policy Studies (KU-IHDPS) is looking for adults with disabilities to complete the National Survey on Health and Disability (NSHD). The NSHD is an annual, online survey about your health, quality of life, access to health care services, and the COVID-19 pandemic, as a person with a disability or health condition.

  • Adults aged 18-64 with any type of disability, chronic illness/disease, mental or physical health condition are encouraged to complete the survey
  • The survey should take about 20 minutes to complete
  • Responses are anonymous
  • Survey opens May 2, 2022

Go to:

Whether or not you complete the survey, you can choose to enter a drawing to win one of ten $100 gift cards. 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].

[Read more…]

Prioritizing HCBS: Updates and Call to Action

The Senate is still working to pass a budget reconciliation package, and they will be deliberating over the next few weeks on the key priorities to include. Funding for Home and Community-Based Services (HCBS) is still a top priority for the Independent Living network and one of the most important issues that NCIL is supporting this year. There is still time for you to take action. This week, Senator Bob Casey, Chair of the U.S. Senate Special Committee on Aging, shared a memo with the Senate Democratic Caucus stressing the urgent need to fund Long-Term Care/Medicaid Home-Based services. Read the memo (PDF).

Take Action!

Contact your Senators and urge them to include HCBS funding in any reconciliation package that may be worked on during the next few weeks! You can call the Capitol Switchboard at (202) 224-3121 (voice) or (202) 224-3091 (TTY) and ask to be connected to your Senators, or you can find your Senators’ contact forms at

[Read more…]