By: Nadine Crespo-Garcia

Medicaid is the primary funding source for home and community-based services (HCBS) that enable individuals with I/DD to live as independently as possible. These services provide critical support, including personal care, job coaching, community engagement, behavioral health, and assistive technology. Cuts of this magnitude would place an overwhelming financial burden on states, potentially forcing them to reduce or eliminate crucial programs. Even if I/DD services are not directly targeted, the ripple effect of these budget reductions would be unavoidable, threatening the well-being and quality of life of thousands of individuals who rely on Medicaid-funded care.

Organizations like Individual Advocacy Group (IAG) stand at the forefront of this issue, advocating for a population that has historically been overlooked—the disabled community. IAG is a nonprofit organization dedicated to supporting individuals with intellectual, cognitive, and neurological differences, providing them with the tools and resources to lead meaningful lives. However, should these proposed Medicaid cuts move forward, agencies like IAG will face substantial challenges in continuing their vital work. A significant portion of IAG’s funding is sourced through the Medicaid waiver program, and budget reductions of this scale could force difficult decisions, including staff reductions and program limitations.

Despite these challenges, IAG remains steadfast in its commitment to quality care. As CEO Dr. Charlene Bennett has emphasized, the organization will not compromise on the excellence of its services, regardless of financial hardships. For over 30 years, IAG has been a lifeline of support for individuals with disabilities, and the agency intends to continue its mission well into the future. However, without adequate Medicaid funding, the ability to sustain and grow these essential services will be at significant risk. Now, more than ever, public support is crucial in advocating for the protection of these critical programs.

The history of disability services in the United States is a painful one, marked by institutionalization, neglect, and discrimination. For centuries, individuals with disabilities were often confined to institutions, stripped of their dignity, and treated inhumanely. In recent decades, significant progress has been made in advancing disability rights, promoting inclusion, and shifting toward community-based services that prioritize independence and self-determination. However, proposed budget cuts threaten to reverse this progress, jeopardizing the lives of both the individuals receiving services and the dedicated professionals who support them.

There have been some positive developments in states like Illinois, where Direct Support Professionals (DSPs)—the frontline workers providing daily care and assistance—recently received a 50-cent wage increase. These professionals are the backbone of agencies like IAG, ensuring that individuals receive the highest level of care. However, even this progress has been undercut by restrictive policies that limit the number of hours DSPs can work. Additionally, the new budget proposal in Illinois will roll back 50% of the changes made last year, reducing the number of service hours covered for individuals with disabilities by 90 hours annually. This rollback equates to a staggering $32 million loss in funding, exacerbating an already precarious situation.

One of the most concerning aspects of these proposed cuts is their impact on programs that extend beyond basic care. Agencies like IAG go above and beyond in their support, incorporating creativity and innovation into their services. Creativity is often viewed as a luxury, but at IAG, it is a foundational tenet of their approach. Over the years, the organization has witnessed firsthand the transformative power of programs that enhance communication skills, foster community engagement, and promote self-expression. These initiatives, which include art, music, media production, and entrepreneurial opportunities, empower individuals with disabilities to live fulfilling, independent lives. Unfortunately, Medicaid does not cover many of these specialized programs, meaning that any additional financial strain on agencies like IAG could result in the loss of these life-enriching opportunities.

The fight to protect Medicaid funding is not just about numbers on a budget—it is about real people whose lives depend on these services. It is about the individuals with disabilities who rely on DSPs for their daily needs, the families who depend on Medicaid-funded programs to ensure their loved ones receive proper care, and the dedicated staff members who have devoted their careers to serving this community. A reduction in funding would not only harm those receiving services but would also place additional stress on caregivers and service providers, leading to burnout, high turnover rates, and an overall decline in the quality of care.

The time to act is now. Policymakers must understand the profound consequences that Medicaid cuts would have on individuals with disabilities and the agencies that support them. Advocacy efforts must be amplified to ensure that legislators hear the voices of those directly impacted by these decisions. We urge you to take a stand and reach out to your local representatives. Tell them to oppose Medicaid cuts and to fight for the continuation and expansion of essential services for individuals with disabilities.

Your support can make a difference. Contact your legislators today and demand that they protect Medicaid funding. Share this message with your community, engage in discussions, and advocate for those whose voices are often unheard. The future of disability services—and the dignity and independence of thousands of individuals—depends on collective action. Let’s stand together and ensure that no one is left behind.

Published by Stephanie M.