The Inclusive Pulse

Challenges and Opportunities for 2025

The current state of the U.S. presents several challenges and opportunities for people with disabilities. Key issues include:

Healthcare & Medicaid Cuts: Proposed changes to Medicaid and healthcare funding threaten access to essential services, home- and community-based care, and prescription medications for people with disabilities.

Housing & Poverty: The lack of affordable, accessible housing continues to be a major barrier, exacerbated by inflation and economic instability.

Employment & Wages: While disability employment rates have improved slightly, many disabled workers still face discrimination, inaccessible workplaces, and subminimum wages under outdated laws.

Transportation & Infrastructure: Public transit remains largely inaccessible, and proposed cuts to transportation funding could worsen mobility barriers.

Education & Inclusion: Attacks on disability rights in schools, such as reduced funding for special education and accessibility rollbacks, threaten inclusion for disabled students.

Threats to Civil Rights: Efforts to weaken the Americans with Disabilities Act (ADA) and roll back disability protections are ongoing, requiring constant advocacy to defend existing rights.

While these challenges persist, the disability community continues to organize, push for policy changes, and fight for full inclusion in society. Now is a critical time for advocacy and action.

What’s New

NCIL Seeks Representatives for Regions 3 and 6

NCIL has two open positions for Regional Representatives on the Board of Directors.

Region 3: Delaware, District of Columbia, Maryland, Pennsylvania, Virginia, West Virginia

Region 6: Arkansas, Louisiana, New Mexico, Oklahoma, Texas

The Regional Representative is the pivotal position in NCIL’s communication system with its membership. The Regional Representative is responsible for communicating at least quarterly with NCIL members regarding IL issues and working with any other group interested in pursuing NCIL’s goals within their respective region. The Regional Reps will assist the NCIL Board and committees in building and coordinating grassroots coalitions to advance NCIL’s advocacy activities. The NCIL Regional Representatives will also assist in the recruitment and retention of NCIL members. The Regional Representatives will disseminate information related to regional or state advocacy efforts to their regional members. Read position descriptions.

The Regional Representatives Committee meets on the on the second Monday of each month.

Read about other NCIL Board positions currently open for nomination.

Contact Kimberly Meck for more information at kimberly@disabilityempowerment.org.

Spotlight: YOU!

Want to be featured? Submit your story and an image to Vicki@DisabilityPridePA.org.

Stories of Strength

For my first story, I will be focusing on the work of the New York-based organization Caring Majority Rising along with NY’s IL network and their work fighting alongside people with disabilities to ensure their voices will continue to be heard.

The advocacy around this program doesn’t stop at this one nonprofit. CILs in New York have played a massive role in this program itself and in protecting it for the many people it serves.

The Independent Living network helped found the Consumer Directed Personal Assistance Program (CDPAP) in New York State, and 11 Independent Living Centers (ILCs) have served as Fiscal Intermediaries in the program for several decades. The network strongly opposed the Single Fiscal Intermediary (FI) model and fought to preserve the role of ILCs. Ultimately, the ILCs were included in the Single FI statute as mandatory subcontractors. Over the last several months, they have been working with the State and PPL (Public Partnerships LLC) to ensure consumers’ rights and services are protected.

CDPAP is the state Medicaid program that allows people who need care, known as home care consumers, to hire the caregiver of their choice.

Unfortunately, on January 6th, 2025, everything started to change drastically. CDPAP has begun transitioning from a tried-and-true service model, which 250,000 New Yorkers with disabilities and their families rely on, to an unsuccessful single Fiscal Intermediary known as PPL (Public Partnerships LLC). PPL is an out-of-state, for-profit corporation with a record of putting profits before people.

As a person with multiple disabilities, I have depended on this program for years. I don’t know where I would be if it weren’t in place. Millions of New Yorkers with disabilities live and thrive in the community because of it. The changes brought by PPL rolled back the ADA and threatened the independence of New York families, which advocates fought so hard for.

A few key things to know about PPL:

• Their history of lost or terminated contracts while managing similar home care programs in New Jersey, Washington, West Virginia, Virginia, and Tennessee.
• Issues faced by non-English speakers: Callers requiring an interpreter are made to listen to a long recording in English and must follow English language prompts before notifying a representative – in English – of the need for interpretation.
• Callers received conflicting information about the rate of pay for Personal Assistants. Some were told their PAs “could be paid less” than what they make now. Others were reassured they would get their same rate of pay. Still others were told they would receive a pay rate “comparable” to what they make now.

Here is how you can take action against PPL and ensure disability rights in New York State.

• Watch this video to see first-hand the damage already happening because of PPL.
• I also encourage you to contact Kathy Hochul to voice your concerns about this horrible plan.

I have seen the fantastic work Caring Majority Rising has done. Please do the same and support their work in any way you can.

Upcoming Events

Home Usability Peer Network: April 9, 2025 and May 14, 2025; 2:00-3:00 p.m. Eastern. Read more

Annual Conference: July 21-24, 2025. Read more

What’s Going on in the Committees!

Finance Committee: If you have an interest in the financial operations and oversight of NCIL, please consider joining the Finance Committee. NCIL will be seeking election of a new Treasurer in July, and being a Finance Committee member before will give you insight into the role of Treasurer and the work of the committee before considering seeking nomination.

Diversity, Equity, Accessibility, & Inclusion Committee: The DEAI Committee spent time working through grievance protocol and looking at the demographic survey information. They have now turned attention to workshops and training NCIL can provide to the membership.

CIL Capacity Building Committee: The CIL Capacity-building Committee (CCC) is focused on the following priorities: (1) Protecting the federal Independent Living Program Appropriation – responding to the federal funding freeze and ensuring no cuts to the federal award for the national program. (2) Protecting the Rehab Act – Advocating for no changes; but being prepared should Congress decide to make changes to the Act. (3) Support CILs and SILCs with building capacity, which is especially important in the face of potential cuts or prolonged funding freezes.

Disability & Disaster Subcommittee: This committee has begun to meet monthly. Beth Meyer from the Florida SILC has been recently appointed to co-chair the subcommittee. They are focusing on state disaster plans and looking at what states do not have disability-led representation in developing the state plan.

Healthcare / Long-Term Services & Supports Subcommittee: The Healthcare Subcommittee works on key issues affecting people with disabilities, from advocating for the personal care assistant workforce to responding to legislation on opioids, chronic pain management, and more. This year, they also pushed back efforts to pass assisted suicide legislation and devalue the lives of people with disabilities. This committee meets every first Tuesday of the month at 3:00 p.m. Eastern on Zoom. They are looking for a co-chair and new members to jump in and make a difference. Join and be part of the conversation!

Chronic Pain / Opioids Work Group: This committee’s plan for the next three months is to work on healthcare policy and disability benefits protection by monitoring the new Administration’s approach to healthcare policy. They will advocate to ensure disability benefits remain protected from potential cuts.

International Subcommittee: World Independent Living Network (WIN) has continued to meet to draft Bylaws. The U.S. is currently serving as Secretariat for WIN during this process.

Housing Subcommittee: The Subcommittee has focused on generating a list of items to address in the environmental illness housing toolkit. Meetings also encourage members to share information about what housing issues they are monitoring or addressing within their state.

Transportation Subcommittee: The Transportation Subcommittee is always looking for new members (including a co-chair). Right now they are working on reviewing Paratransit rules, which haven’t been updated in 30+ years.

Annual Conference Subcommittee: The Annual Conference Subcommittee is planning for the 2025 Annual Conference scheduled for July 21-24 in Washington, D.C. The theme of this year’s conference is LEVEL UP: Building Tomorrow Together. It is a powerful reminder that advancing disability rights, justice, and Independent Living requires both individual dedication and collective effort. Together, we can level up our skills, partnerships, and impact, knowing that while the work may never be fully complete, our contributions today are vital steps toward building the better tomorrow we envision. This four-day event will include a march to & rally at the Capitol, Hill visits with elected officials to help advance NCIL’s annual legislative priorities, two plenary sessions, and 25 in-person workshops. Join us!

Membership, Recruitment and Retention Committee: This committee is currently seeking members to help determine how NCIL can better engage with its membership and provide opportunities for members to engage in national advocacy, learn from peer CILs around the country and world, and to empower non-members to join the cause with us. They need your help to make membership mean something, not for NCIL, but for Disability Justice and Independent Living itself!

Learn more about the purpose of each of NCIL’s Committees and Subcommittees and how to join a committee.

Member Contributions

Send us something written (200 words or less), a photograph you took, or a photo of a piece of art you made (with image description) to Vicki@DisabilityPridePA.org.

DEAI Committee Call to Action

The Diversity, Equity, Access, and Inclusion Committee is on a mission! We’re aiming to achieve 500 completed Demographic Surveys by the end of 2025, and we need YOUR help to make it happen. If you’ve already completed the survey, THANK YOU for taking the time to contribute! If not, don’t wait — take just 5 minutes to be part of this transformative effort and help us reach our goal!

Take the survey

USICD Survey on Refugees with Disabilities and the Organizations that Support Them

The United States International Council on Disabilities (USICD) is conducting a two-phase study to capture the experiences of refugees with disabilities and the organizations that support them. The first phase involves interviews with refugees with disabilities about their experiences while receiving support from the Refugee Resettlement Agencies throughout the United States. The second phase of the study aims at identifying the disability organizations that support refugees with disabilities, the associated costs, and collaboration with the Refugee Resettlement Agencies. Identifying information, such as names or organization titles, will not be included in the results of the study. The final report will be published on the USICD website.

Take the survey

Resources

Check out job opportunities from NCIL members across the IL Network.

Invite a new friend to NCIL: NCIL Member Benefits