Fifty years ago, independence for a person with an intellectual or developmental disability was largely not considered a relevant concept. People with significant cognitive or adaptive limitations were institutionalized, cared for in segregated settings, or supported entirely by families who had no public infrastructure to draw on. The idea that a person with Down syndrome might live in their own apartment, hold a job, manage relationships in a community that included people without disabilities, and make meaningful choices about how they spent their days was not part of the mainstream conversation about disability.
That has changed substantially, and IDD agencies are the infrastructure through which that change has become real in the lives of specific people in specific communities across the country.
What Independence Actually Means in This Context
Independence for people with IDD does not mean the same thing it means when the word is applied to someone without a disability. It does not mean the absence of support. For many people with intellectual or developmental disabilities, genuine independence requires more support, not less, because the right support creates the conditions for self-determination that no support at all does not.
A person with IDD who receives three hours of daily living support from a DSP and uses that support to live in their own apartment, keep their own schedule, and participate in community life they have chosen is more independent in any meaningful sense of the word than a person with the same disability living in an institutional setting with 24-hour staff coverage but no meaningful choices about how their days unfold.
The shift in how independence is understood in the IDD sector is fundamentally a shift from absence of support as the definition to self-determination with appropriate support as the definition. IDD agencies are the organizations that make the second version possible.
From Institutions to Community: What Changed
The deinstitutionalization movement of the 1970s and 1980s, driven by advocacy from people with disabilities and their families, legal challenges to institutional conditions, and the passage of landmark federal legislation, began the transition from institutional care to community-based services for people with IDD. The Olmstead decision in 1999 established that unjustified institutionalization of people with disabilities violated the Americans with Disabilities Act, creating a legal mandate for community integration that continues to shape IDD service policy.
The HCBS Settings Rule, fully implemented in 2023, established federal standards requiring that Medicaid-funded community services actually support integration, choice, and self-determination rather than simply occurring outside of an institution. Services funded through Medicaid waivers must be delivered in settings where people with disabilities can access the broader community, make meaningful choices, and participate in community life in ways that are comparable to individuals without disabilities.
IDD agencies did not create this policy direction. But they are the organizations that translate it into daily operational reality: the job coaches helping clients find and keep employment, the DSPs supporting people in the community activities they have chosen, the case managers building service plans around what each person actually wants rather than what happens to be available.
What Supported Employment Is Doing
One of the most concrete expressions of changing independence expectations in the IDD sector is the expansion of supported employment. Competitive integrated employment, meaning real jobs in real workplaces at real wages alongside people without disabilities, has become a policy priority and a growing practice reality.
IDD agencies providing supported employment services are placing people with intellectual and developmental disabilities in jobs they hold because they can do the work, supported by job coaches who help them navigate the workplace environment and build the skills to succeed in it. The employment outcomes, wages earned, skills developed, social relationships built at work, matter for independence in ways that go beyond the paycheck.
An individual with IDD who has a job they go to three days a week, relationships with coworkers, a routine that is theirs, and a contribution that is recognized by an employer and colleagues has something qualitatively different from what was available to the previous generation in a segregated workshop setting. IDD agencies that are doing supported employment well are building that different reality for specific people in specific communities.
What Self-Direction Is Doing
An increasing number of states offer self-directed Medicaid waiver options that allow people with IDD and their families to manage their own service budgets, hire their own support workers, and design their own service plans within defined parameters. Self-direction is a structural expression of the independence principle: the belief that people with IDD are the best judges of what kind of support they need and how it should be delivered.
IDD agencies play a role in self-direction programs both as fiscal employers and as support organizations that help people navigate the self-direction process. The shift toward self-direction represents a continued movement of decision-making authority toward the people receiving services and away from the agencies and systems that historically made those decisions on their behalf.
What Still Needs to Change
Progress on independence for people with IDD has been real and significant. It has also been uneven. Medicaid waiver waitlists in most states mean that people who are eligible for community-based services wait years before receiving them. DSP shortages mean that the support people need to live independently is not always available when and how they need it. Rates that have not kept pace with actual service costs put financial pressure on the agencies trying to do this work well.
The independence that IDD agencies are working to create for the people they serve exists within a funding and policy environment that does not always make it easy. The organizations doing this work are simultaneously managing the compliance demands of a heavily regulated public funding system while trying to build the kind of individualized, relationship-centered, community-integrated support that independence actually requires.
That tension is what makes this sector both challenging and important. The IDD agencies navigating it well are building something genuinely meaningful for specific people in their communities, one service plan, one employment placement, one DSP relationship at a time.
Vertex Systems has been building software to support the organizations doing this work since 1981. Connect with the team to learn more.
