Feature Issue on Person-Centered Positive Supports and People with Intellectual and Developmental Disabilities

When my brother Evan was born with Down syndrome almost 40 years ago, my family was told that the best option avail­able for him, and “for the sake of the entire family,” was to place him in an institution. At that time, institutionalization was the only publicly-funded option, and most Americans like Evan were segregated from the rest of society. Fortunately, new laws, policies and advocacy were developing. These included the first anti-discrimination law protecting people with disabilities, the statutory right to a public education for all students with disabilities, legal challenges to abuse and neglect in institutions, and the first federal funding for community services. A revolution had begun, in which people with disabilities and their families began demanding the right to be included in their communities.

A “rival image” to institutional life began to emerge, and expectations rose signifi­cantly over the ensuing decades. People with disabilities, supported by their families, pursued the right to live in their own homes, have real jobs, and be “of the community” and not just visitors in it. Yet most states’ disability service systems have not evolved to meet these changing expectations and desires. These systems largely continue to segregate people with disabilities in congregate programs focused on group activities and schedules rather than on individuals’ own goals and inter­ests. But change is once again in the air. New federal policies are creating a modern vision for the full and authentic inclusion of people with disabilities in society. A new revolution has begun.

Enforcement of the Americans with Disabilities Act and the Olmstead Decision

The “integration mandate” of the Amer­icans with Disabilities Act, affirmed by the Supreme Court’s 1999 decision in Olmstead v. L.C., prohibits needless segregation of people with disabilities and gives them a civil right to live, work, and be full members of their communities. In the last several years – in large part due to the Obama Administration’s prioritization of Olmstead enforcement – advocacy based on the integration mandate has expanded from challenges to unjustified placement of people in state-operated institutions to the creation of robust, community-based alternatives for adults and children in or at risk of entering a wide range of segregated settings, including private institutions, nursing homes, board and care homes, congregate day settings like sheltered workshops and day habilitation, and segregated schools and classrooms.

Dozens of Olmstead cases in the last several years have set legal precedents and created models of the community services necessary to help people with disabilities fully participate in community life, including Medicaid waivers (often restructured to focus on more individualized services), residential supports and rental subsidies to help people live in their own homes or apartments, a range of community-based crisis services, supported employment, and family supports.

Dozens of Olmstead cases in the last several years have set legal precedents and created models of the community services neces­sary to help people with disabilities fully participate in community life, including Medicaid waivers (often restructured to focus on more individualized services), residential supports and rental subsidies apartments, a range of community-based crisis services, supported employment, and family supports. Olmstead and the inte­gration mandate have become a powerful weapon in the fight for real integration and inclusion of people with disabilities.

New Federal Rules Defining “Community” for Home and Community Based Services

Building off momentum created by Olmstead enforcement and new opportu­nities for federal funding created by the Affordable Care Act, the federal govern­ment recently issued rules defining the characteristics of “community” settings that can be funded as Medicaid Home and Community Based Services (HCBS) (Medicaid Program, State Plan Home and Community Based Services, 2014). The goal of these rules is to ensure that all individuals receiving HCBS have full access to the benefits of community living. They require that HCBS settings be integrated in and facilitate access to the broader community, and give people in those settings control over life choices and daily activities, privacy, a choice of settings and service providers, and opportunities for competitive integrated employment. States – with the input of stakeholders – are starting to plan and implement changes necessary to comply by March 2019.

The HCBS settings rules carry great promise for moving state systems toward more integrated, individualized, and person-centered services. They are forcing us to seriously evaluate whether common service models and settings really provide people with disabilities access to the com­munity, choice and control over their daily lives, and opportunities to interact with people without disabilities. And they are giving us the opportunity to consider what we want our modern disability service systems to look like.

New federal policies are striving to align states’ disability service systems with the goal of giving people with disabilities the chance to live in a home of their choice, have a meaningful job, and be an authentic member of the community. But doing so requires person-centered planning based on individual interests, strengths and goals...

But this current revolution, like the last one, is not without controversy. A small, but vocal group of providers and families of people with disabilities are pushing back against these changes, arguing that there is a “right” to segregated program models that congregate people with disabilities together and separate them from the community. Nevertheless, the vast majority of those in the disability community agree that the rules are the culmination of de­cades of progress and are finally bringing long-overdue changes that will help people with disabilities live, work, and participate fully in their communities.

Federal Policies Regarding Employment of People with Disabilities

Employment is a new frontier in today’s fight for change. Less than 20% of people with disabilities nationally are receiving services to help them work in real jobs (Statedata.info, 2016). Instead they are spending their days in segregated day programs like sheltered workshops (where they are paid subminimum wage) or facility-based day habilitation. But “real jobs for real pay” is a rallying cry in this new revolution and is a goal supported by recently-enacted federal policies. The Workforce Innovation and Opportunities Act (WIOA) of 2014 (P.L. 113-128) establishes as a national priority competitive integrated employment for people with disabilities (Government Printing Office, July 22, 2014). It also significantly limits placement of people with disabilities – particularly youth transitioning from school – into segregated and sub-minimum wage day programs. WIOA aligns with recent Olmstead enforcement activities that target segregated programs like sheltered workshops and day habilitation, and requires the expansion of supported employment services to help people with disabilities get and maintain real jobs, with mainstream community activities available for those not working full-time. The combination of WIOA, Olmstead enforcement, and the HCBS settings rules is causing many states to move away from outdated segregated day models and significantly expand opportunities for real jobs.

Conclusion

New federal policies are striving to align states’ disability service systems with the goal of giving people with disabilities the chance to live in a home of their choice, have a meaningful job, and be an authentic member of the community. But doing so requires person-centered planning based on individual interests, strengths and goals; individualized supports instead of limited choices in congregate settings; opportuni­ties to live among, and to work alongside, people without disabilities; and more indi­vidual control and choice over services.

All of these changes will take work. People with disabilities, their families, and advo­cates must continue to demand change and fight for resources to make them happen. Providers must be part of the solution. They need technical assistance and resources to help them change from outdated segregated models to individual­ized best practices. Finally, we need to be vigilant in ensuring that our community system can meet the needs of all people with disabilities, including those with the most significant needs.

Because of my brother’s strong self-advocacy and the support of our family, he is receiving services that help him live the life he wants. Evan lives in an apart­ment with a roommate he chose, works in a real job in the community, serves as an appointed member of his state’s Council on Developmental Disabilities, and has close relationships with his girlfriend, family, and friends. But Evan’s experience is still the exception, not the rule. It is up to all of us to join in this revolution and ensure that all people with disabilities are full participants and valued members of our society.

The revolution starts now

When you rise above your fear

And tear the walls around you down

The revolution starts here

Where you work and where you play

Where you lay your money down

What you do and what you say

The revolution starts now

(Earle, 2004)