40 Big Ideas

Summary

The big ideas on our list helped people with IDD to live and learn in their communities and work in real jobs for real pay. We still have a lot of work to do. We need to spend more public money on training support staff. We need to include people with IDD in research and demand better results.

Change is hard, and it takes time. The system supporting people with intellectual and other developmental disabilities (IDD) has long been shaped by big ideas, often framed as either/or choices and sometimes adopted with little evidence of their effectiveness. While many of these ideas have resulted in significant policy changes and real improvements in people’s lives, much work remains unfinished, and there are many things to worry about.

Accomplishments to Celebrate, Balanced with Reality

Perhaps the most significant accomplishment of the past five decades, and one that should be celebrated, is the progress of deinstitutionalization. At its peak in 1967, 194,650 people with IDD lived in state-operated institutions. By 1987, that number had fallen to 45,081, and by 2020, it was below 16,000. When community services began in 1982, only 1,381 people lived in them. By 1995, more people with IDD who received services lived in community settings than in institutions, and today nearly 1.1 million people with IDD live in the community, with family, in their own home, or in host or foster homes. Public outcry, exposés, strong advocacy, sound public policy, and litigation drove this transformation. But the work is not finished. Far too many people with IDD still remain in state institutions, face homelessness, live in mental health facilities, languish in emergency departments or hospitals, or are in the justice system.

We have also seen success in people with IDD working in community jobs, earning real wages. Early supported employment demonstrations showed that people with complex support needs can succeed in the workplace, yielding economic, social, and independent living benefits. In the second half of the 20th century, sheltered workshops were the primary model of employment support for adults with IDD. Today, roughly 24% of people with IDD are in integrated employment, while approximately 76% receive non-work services.

Similarly, while we promote self-direction as a best practice, only 12% of people with IDD currently use self-directed services and supports. It is also important to recognize that the IDD service system reaches only about 20% of people with IDD overall.

Photo courtesy Tom Olin

Education has also evolved. What began as segregated schooling shifted to opportunities for students with and without disabilities to learn in the same buildings, and eventually to inclusive education approaches informed by universal design for learning, benefitting all students. Yet, fewer than 19% of students with intellectual disability spend at least 80% of the school day in general education classrooms.

Communities are more physically accessible than in the past, and many are advancing linguistic accessibility by translating materials into multiple languages and using plain language. Digital accessibility has also evolved in recent years, with new federal policy-driven requirements set to take place soon.

The journey toward true inclusion of people with IDD has always been driven by core values: the belief that everyone belongs, that all means ALL, and that every human has both strengths and needs. Ensuring that policies are shaped by the voices of people with IDD, honoring “nothing about us without us,” has greatly shaped needed change.

Language, too, has played an important role. Over time, words shift, evolve, or are replaced, even when their core meaning remains. For example, integration, used as deinstitutionalization was beginning, evolved into community integration, then community integration and participation, later inclusion and community inclusion, and now belonging. As described in the Big Idea #17 (Normalization), Wolf Wolfensberger became disillusioned with the principle of normalization because he felt it was being watered down, misunderstood, and misapplied, prompting him to expand his ideas through new terminology. The same has happened with person-centered practices, which have been interpreted through approaches such as personal futures planning, MAPS, and person-centered thinking, and ultimately codified in state and federal regulations as person-centered planning.

But changing words alone does not change attitudes or practices. In the end, true inclusion of people with IDD is grounded in values, attitudes, and relationships. It is about human-to-human connections and mutual understanding, getting to know people with IDD, inviting them into the many facets of community life, and supporting them in valued roles. This cannot be regulated.

What’s Next?

Much progress has been made over the past several decades, and that progress deserves to be celebrated. But there is still much to do.

The community system was originally envisioned and built by family members who sought help, rejected institutions as places of abuse and neglect, and wanted their children to have opportunities in the community. Many of today’s provider organizations were founded by these families and their allies. Over time, the system has shifted toward larger provider organizations, often the result of consolidations of smaller organizations that struggled to compete or whose founders retired. Increasingly, for-profit corporations backed by private equity investors are entering the field. As the system continues to change, all organizations, large and small, must be expected to foster creativity, innovation, and progress, centering on the voices and experiences of people with IDD, and ensuring that mission always outweighs margin.

Home and community-based services (HCBS) were originally grounded in the principle that community services should be delivered at a lower cost than institutional care. States submit annual reports to demonstrate these differences in costs. As discussed in big idea #24 (Direct Support Professionals), these savings are achieved largely because the direct support workforce in community settings earns far lower wages, has few affordable benefits, and receives less training. Nationally, we have failed to build a stable workforce to support people with IDD. There are no consistent pipelines, no mandatory pre-service training programs, and the profession remains largely invisible despite being one of the largest in the country. This must change.

Demand for services has never been higher. Too many people with IDD remain on waiting lists, individuals with complex behavioral health needs languish in acute care facilities and emergency departments without the expertise to meet their needs, and the prevalence of disabilities such as autism continues to rise. Meeting these needs requires a stable, well-compensated, and well-trained workforce with access to affordable healthcare, paid time off, and a career pathway. It will also require greater use of technology and teleoutreach services alongside human support. Importantly, we must consider ways that blend family – paid and unpaid – with DSPs when out-of-home placements are needed. Too often, when a person can no longer live at home, family members are excluded from providing consistent and reliable support. We must create new models where families are recognized as essential partners in supervision and support. We must also stop looking for the one big idea or service model that will meet everyone’s needs and respect that people thrive when they are supported in ways that meet their unique needs and desires.

Too many people with IDD remain on waiting lists (and) languish in acute care facilities and emergency departments. The prevalence of disabilities such as autism continues to rise.

Our rhetoric espouses best practices, yet the reality is that most people with IDD receive no services at all. For those who do, services too often settle at meeting minimum regulatory requirements rather than achieving meaningful outcomes. To move forward, we must identify the outcomes we expect, measure whether they are achieved, and hold systems accountable. Instead of asking for more of the same, we need to reimagine bold new approaches. People with disabilities and their allies believe in the social model of disability, yet our long-term services and supports (LTSS) continue to be funded through a national health insurance program rooted in the medical model. Why aren’t we looking for an alternative that is grounded in LTSS, aligned with the social model, and committed to disability justice?

The progress of the past decades was made possible by steady funding, policy innovation at both the national and state levels, and, most importantly, leadership by people with IDD and their allies. Truthfully, if the 40 Big Ideas shared in this issue of Impact had been fully embraced and implemented across all systems, we’d be much further along. Too often, new ideas are launched without applying what we know from implementation science about how to change systems. Evaluation is far too rare, and a rush to embrace new big ideas without sufficient research and development is too common.

The path ahead requires courage, persistence, and collaboration. To get there, we must invest in a stable and respected workforce, demand accountability for meaningful outcomes, and build systems that are led by the voices of people with IDD and their families. Real progress will come not from words alone or the next big idea, but from bold action, with policies grounded in justice, communities that lead with belonging, and partnerships that refuse to settle for mediocrity. The next chapter is ours to write; we cannot afford to settle for anything less than full inclusion.