Across the United States, people with disabilities depend on an intricate network of supports to live, work, and participate fully in their communities. These supports, often sustained through Medicaid Home and Community-Based Services (HCBS), are not enhancements to an otherwise independent life; they are the foundational conditions that make community living possible. As a disability self-advocate who volunteers in policy education and community advocacy within Northern Virginia, I have spent years navigating the same systems that families and self-advocates regularly confront. Through this lived engagement, I have developed a deep understanding of the practical, emotional, and structural realities that shape disability life in America today.
While I do not serve as staff or provide direct case assistance, my volunteer advocacy work places me in conversation with individuals and families who depend upon HCBS for their daily stability. The stories they share, coupled with my own experiences navigating an often-opaque service landscape, have shown me a consistent truth: HCBS is not merely a social service. It is the architecture of dignity, autonomy, and belonging to a community.
HCBS enables people to remain in their homes, sustain community ties, engage in civic life, and maintain the daily rhythms that underpin personal agency. In my volunteer role, I support advocacy efforts to help people better understand the systems that affect them, including waivers, service options, supported decision-making, and community-based alternatives. Through this work, I am regularly exposed to the broader human landscape that surrounds these programs: the aspirations of individuals seeking independence, the anxieties of caregivers balancing countless responsibilities, and the structural barriers that persist across disability systems.
When HCBS is accessible and adequately funded, it provides:
Without such support, community life becomes precarious. With them, it becomes possible.
HCBS is not a luxury; it is the mechanism that allows people with disabilities to inhabit their lives with agency rather than dependency, choice rather than coercion.
Although I do not conduct national, state-by-state research, the patterns that emerge from the lived experiences shared with me, and those reiterated by advocates across the country, are remarkably consistent. When HCBS is underfunded, understaffed, or absent, the repercussions are swift and severe.
People lose long-term caregivers because wages cannot sustain the workforce.
Families reach breaking points under the weight of unsupported care.
Individuals face crises of medical, psychological, and financial; these could have been avoided with adequate community support.
And far too often, institutionalization becomes the default, not because the individual requires that level of care, but because no viable alternative is available.
I have spoken with people who waited nearly a decade for waiver services, only to experience declining health while on waitlists. I have met aging caregivers who fear what will happen when their own health deteriorates, and young adults who cycle through hospital stays because community supports are inconsistent or nonexistent. Furthermore, I have also watched families lose employment simply because respite or attendant care was unavailable at critical moments.
These are not isolated incidents; they represent systemic vulnerabilities.
The absence of HCBS does more than compromise quality of life. It creates a structural crisis, increasing reliance on emergency medical systems, elevating the risk of homelessness, and accelerating institutional placements that strain both state and federal systems.
Most importantly, it undermines the fundamental right of people with disabilities to direct their own lives.
In essence, when HCBS disappears, autonomy disappears with it.
My work as a volunteer disability self-advocate is rooted in lived experience. As a neurodivergent individual and trauma survivor, I have navigated environments that were not designed with my needs in mind. This perspective informs the lens through which I view disability policy and community supports: one that recognizes both the structural inequities embedded within our systems and the transformative power of accessible services.
Systems governing disability supports are notoriously complex, fragmented across agencies, burdened by administrative requirements, and often inaccessible to those who require them most. HCBS, when functioning as intended, reduces that complexity. It shifts the weight of navigating inaccessible systems away from individuals and families, allowing them to focus instead on living their lives.
Every day, I witness the difference this makes. I see individuals who, with the right supports, build stable routines, grow into leadership roles, reconnect with communities, or simply breathe easier because they know they will have consistent assistance tomorrow.
These supports do more than sustain life.
They affirm personhood.
They enable aspiration.
They reinforce the belief that every person deserves the opportunity to thrive, not merely survive.
Community living should not be aspirational. It should be the expectation.
The Senate Special Committee on Aging holds a profound responsibility: to ensure that the future of community living in the United States is anchored in dignity, safety, and equity. Strengthening and expanding Medicaid HCBS is not merely a policy decision; it is a moral commitment to the lives of millions of Americans.
Congress must:
People with disabilities are not requesting special treatment. They are asking for equal access to the fundamental components of community life: a home, a routine, connection, autonomy, and the ability to live among their peers.
These are not privileges. They are rights.
Community living must never be treated as an expendable budget item or an optional feature of the social safety net. It is a core expression of a society’s values, an affirmation that every person deserves the opportunity to live with dignity, independence, and safety in the place they call home.
The future of HCBS will shape the future of disability life in this nation. I urge Congress to defend that future, strengthen it, and recognize what disability advocates have articulated for decades: support is not charity. It is civil infrastructure. It is the backbone of a society that believes all its members are worthy of belonging.
I extend sincere appreciation to the members of the Senate Special Committee on Aging and their staff for engaging with the lived experiences of people with disabilities, caregivers, and advocates. Your willingness to consider these perspectives is essential to shaping policy that is both humane and effective. Thank you for recognizing that the individuals most affected by these decisions deserve to be heard and deserve to be seen.
Ian Allan
Self-Advocate for The Arc of Northern Virginia
Ian Allan is a self-advocate with a deep commitment to policy literacy, systems change, and disability justice. Through The Arc of Northern Virginia, he works to ensure that people with intellectual and developmental disabilities are not merely served by systems, but are actively shaping them.
As a 501(c)(3) nonprofit organization, The Arc of Northern Virginia relies on private support from individuals, corporations, organizations, and foundations to fund our efforts. Your generous donations help make it possible for us to provide programs, services, and advocacy so that people with IDD can live “A Life Like Yours.”
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