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.

• Add your organization as a signatory (https://bit.ly/47JNAmA)
• Read Letter 1: Fees and FDA approval (https://bit.ly/4a6yclN)
• Read Letter 2: Barriers to Accessing Prescriptions and Telemedicine (https://bit.ly/3uHfGjH)

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

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. 

• Open a Word document with the 8 questions (https://bit.ly/44hoGIq)
• Read the NPRM – PDF (https://bit.ly/47BcYv5)
• Read a sample response (https://bit.ly/3OYPVD6) or an executive summary (https://bit.ly/45cItKv) from the Center for Medicare Advocacy

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”.

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.

• Register

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

Questions on Lobbying vs. Advocacy?

See NCIL’s Frequently Asked Questions (FAQ) document ADVOCACY AND LOBBYING IN CENTERS FOR INDEPENDENT LIVING.

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. 

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 (https://bit.ly/3GSKwt5).

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.

Images:

• 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.

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 senate.gov.