Progressive HCBS-Home and Community Based Services Reform is Needed now more than Ever.
Building a Person-Centered Future: Why Community-Based Services Matter for People with Disabilities
Home and Community-Based Services have been around since 1981. In 1981, Congress passed the Omnibus Budget Reconciliation Act to create the first Medicaid waiver via Section 1915(c). This gave states a way to offer alternatives to institutional care. A waiver is an approval from CMS (Centers for Medicare & Medicaid Services) that allows states to test ways to provide services in the community rather than in an institution. Without Medicaid waivers, people with disabilities would still be in institutions.
Over the years, Medicaid waivers—also known as HCBS—have expanded to provide alternatives to segregated settings like institutions and nursing homes. This has enabled a broader range of services to be offered. Medicaid is currently the only funding source for long-term services and supports for seniors and people with disabilities. It is much cheaper to support seniors and people with disabilities in the community across the lifespan than in segregated settings such as nursing homes and residential programs, where all services are provided, including day programs and sheltered workshops. However, low pay and a lack of livable wages for Direct Support Professionals erode these benefits. Low wages for DSPs contribute to high turnover costs, increased overtime, and greater reliance on temporary staffing to fill gaps. Lastly, instability in the direct care workforce leads to a higher risk of individuals being forced into institutions or nursing homes.
To make the Home and Community-Based Services system more person-centered, states must invest more in less restrictive settings, such as supportive apartment programs that help people with disabilities live, work, and thrive in the community. Inclusive housing models are at the heart of person-centered care. The current reliance on group homes, institutions, and day programs is not person-centered. A second step is to eliminate IQ limits and the requirement to meet an ICF level of care to receive support. Using IQ testing alone is not a reliable measure of a person’s ability to perform daily tasks or navigate everyday challenges. Examples include cooking, cleaning, budgeting, following doctors’ orders, maintaining a healthy diet, securing and maintaining employment, managing public benefits, preparing for a colonoscopy, or completing an at-home COVID test.
Programs should also incorporate technology as a tool to support seniors and people with disabilities in living independently, such as Safety Connections used in Vermont. The system must also expand alternatives to guardianship so that people with disabilities can retain their full civil rights, including voting. In some states, individuals cannot vote if they have a guardian. For instance, supported decision-making allows people with disabilities to make life decisions with guidance from a trusted support network. In the last 10 years, significant progress has been made through HCBS settings rules, which require conflict-free case management separate from service providers. The goal is to ensure that the places where people with disabilities live, work, and socialize truly feel like community living. This change is based on years of advocacy and research gathering input from people with disabilities, which revealed that many so-called “community settings” did not actually feel like community living.
In the area of supporting people with autism and other disabilities who fall through the cracks, eligibility criteria must change at a national level. Strict requirements such as an IQ of 70 or below, homelessness, or being in crisis should become a thing of the past. IQ scores are not an accurate reflection of the strengths and daily functioning challenges of people with autism.
Our Home and Community-Based Services system must become proactive, focusing on preventing crises rather than reacting to them. Providing access to even a modest HCBS waiver package can significantly improve outcomes in healthcare usage, employment, social connection, independent living, and executive functioning. Studies show that individuals without access to HCBS have higher rates of emergency room visits and healthcare usage. Access to HCBS can help reduce these rates among both children and adults with autism.
As people with autism age, access to HCBS provided by Direct Support Professionals becomes even more critical. One study found that people with autism may experience accelerated aging, often 15–20 years earlier than those without disabilities, making them more likely to develop health challenges earlier. For example, during the COVID-19 pandemic, individuals who could not administer at-home tests often relied on urgent care visits, which are far more expensive than having a DSP provide support at home.
In employment, people with autism experience some of the highest rates of unemployment and underemployment. A major cause is the lack of long-term job coaching funded through Medicaid HCBS. Medicaid waivers are currently the primary source of long-term employment support. For instance, from 2003 to 2005, unsuccessful vocational rehabilitation case closures increased from 453 to 696. Supported employment, including job coaching, has proven effective in helping individuals with autism secure and maintain jobs. However, budget cuts and eligibility restrictions remain major barriers.
Improving these outcomes requires providing access to a modest level of HCBS that supports healthy lifestyles, stress management, transportation, problem-solving, social connections, job development, system navigation, benefit management, protection from financial exploitation, and mental health support. Investing in prevention and early intervention leads to better outcomes for individuals and society. Some studies estimate the lifetime cost of supporting someone with autism ranges from $3.6 million to $7 million when considering medical and social costs.
From a cost perspective, Home and Community-Based Services are significantly more cost-effective than segregated settings such as institutions, nursing homes, and sheltered workshops. Studies consistently show that the average per-person cost of HCBS is lower than institutional care, although total costs depend on the number of people served and their level of need. By 2015, HCBS funding surpassed institutional care as the largest source of long-term care funding due to its cost-effectiveness and the preference for community living. Despite this, many individuals with developmental disabilities still face barriers to full inclusion due to inadequate community infrastructure and persistent institutional bias in Medicaid. This bias guarantees access to institutional care but not to community-based living, as HCBS remains optional.
In 2025, it cost an average of $313,188 annually to support someone in an institution, compared to $49,764 through HCBS waivers in the United States, according to the Case for Inclusion. One reason for higher institutional costs is that staff in these settings often receive higher wages and benefits as state or private employees.
Major barriers to transitioning fully to community living include inadequate infrastructure, societal attitudes, government investment levels, and union opposition. Many still view disability as a personal deficit rather than a societal responsibility. As the CDC notes, when disability is viewed as a social responsibility, it becomes easier to address shared challenges. Negative attitudes remain a key barrier. Additionally, unions may oppose closures of institutions due to concerns about job loss, as institutional workers often receive higher wages than those in nonprofit HCBS roles.
The number of Americans living in state-run institutions declined from 194,650 in 1967 to 17,596 in 2018. As of 2020, 17 states have closed all large state-run institutions for people with developmental disabilities.
Family attitudes and lack of long-term planning also contribute to institutionalization risks. With increased life expectancy, many individuals with disabilities outlive their caregivers. Without proper planning, institutionalization becomes more likely. Some families believe their loved ones are too disabled for community living, particularly those with high medical needs. However, with proper supports, all individuals can live and work in the community.
Public awareness campaigns highlighting success stories are essential. As Tia Nelis states, “Any time you segregate anybody away from the community, it’s still like being in an institution.” Studies show that 82% of abuse cases involving people with intellectual and developmental disabilities occur in institutional settings, where individuals have limited control over their lives.
Institutions reflect the medical model of disability, which focuses on fixing the individual rather than removing societal barriers. To move forward, we must invest in HCBS by increasing Medicaid rates so providers can offer livable wages, benefits, training, and career growth for Direct Support Professionals. DSPs play a critical role in improving health outcomes, mental well-being, and community inclusion.
We must also expand access to affordable, accessible housing in areas with strong public transportation and access to essential services. Additional supports beyond Section 8 should be developed, along with homeownership opportunities. In employment, we must expand supported employment, reduce bureaucratic barriers to entrepreneurship, and address disincentives in public benefit programs.
Cultural change is equally important. We must embrace the “dignity of risk,” allowing people with disabilities to make mistakes and learn, just like anyone else. Too often, individuals with disabilities are held to unrealistic standards and denied opportunities for growth. For example, making a mistake on public transit or finances can lead to unnecessary restrictions like guardianship.
As Robert Perske noted, overprotection can “smother people emotionally” and strip them of dignity. Embracing risk is essential for growth, independence, and inclusion. Presuming competence means not limiting individuals based on assumptions about their disability.
As we move forward in the 21st century, we must shift from the moral and medical models of disability to the social model, which views disability as a societal issue rather than an individual flaw. This shift promotes autonomy, inclusion, and economic growth.
The moral model of disability frames disability as a personal failing or punishment, contributing to stigma, discrimination, and segregation. These harmful beliefs continue to influence societal attitudes and policy decisions.
In conclusion, while we have made significant progress in advancing rights and supports for people with disabilities, much work remains. We must continue building a Home and Community-Based Services system that is truly person-centered, inclusive, and responsive to the needs, rights, and aspirations of people with disabilities and those who support them.
