This July marks the 30th anniversary of the signing of the Americans with Disabilities Act (ADA). This landmark civil rights law aims to eliminate discrimination against people with disabilities in the United States. In this Capstone Newsletter we highlight the progress that has been made since the implementation of the ADA 30 years ago, as well as where opportunities remain for improvement. We then provide guidance regarding how organizations can transition away from segregated services, in alignment with the values of integration promoted by the ADA.
The ADA and Its Legacy
By Carli Friedman, Ph.D., CQL Director of Research
People with disabilities, both in the United States and around the world, have long faced discrimination and ableism. People with disabilities have been denied civil rights, opportunities, and freedoms, often with little legal recourse to address these injustices. For these reasons, the ADA was introduced 30 years ago in an attempt to promote justice, equality, and inclusion of people with disabilities. This national mandate aimed to create consistent and enforceable standards that would reduce disability discrimination. In many ways the ADA is a landmark law; in fact, the ADA served as the basis for the United Nations Convention on the Rights of Persons with Disabilities (CRPD), which hundreds of countries around the world have since signed and ratified.
The ADA has resulted in a number of advances for people with disabilities, such as related to employment discrimination, nondisabled people’s attitudes about disability, and accessible transportation (Gaeta & Moss, 2019; Pulrang, 2014). The ADA was also crucial for the Supreme Court Olmstead v L.C. decision, which ruled and reinforced that based on the ADA people with disabilities have the right to community integration. According to the Olmstead decision, people with disabilities have the right to receive services in the least restrictive setting possible.
ADA: More Progress Is Needed
Despite these advances, the ADA has been critiqued for shortcomings and a lack of progress. Disability activist Alice Wong (2015) notes,
“While it’s wonderful to celebrate this huge anniversary and look back with nostalgia, I resist the sense that the ADA or other similar laws are the pinnacles of disability rights. There is so much more that needs to be done. Culture change is slow and difficult, especially when it comes to dismantling institutions, policies and structures that continue to marginalize and hurt people with disabilities.”Alice Wong (2015)
Many people with disabilities have not seen changes in their lives since the ADA passed, including related to improvements in accessibility, adaptations of businesses, employment opportunities, increases in life satisfaction, and many others (Harris Interactive, 2010; Pulrang, 2014). In addition, many people with disabilities continue to face disparities in participation and community integration as a result of physical and structural barriers, and discrimination.
While the ADA upholds people with disabilities have the right to integration, many people with disabilities remain segregated. In the next sections of the Capstone, we provide ideas about organizational transformation, particularly regarding moving away from segregated settings to promote the inclusion of people with disabilities and honor their civil rights. While much progress has been made in the last 30 years, much work remains.
Transitioning To A New Home
By Gretchen Block, CQL Director of Partner Engagement
There are a number of practices organizations can implement to help people transition from a segregated living situation to a home or apartment of one’s own choosing in the community. Every stakeholder connected to this change is impacted, and it can be both exciting and daunting.
Identify The Non-Negotiables
Open and honest communication is essential to exploring options and making decisions based on what people indicate is most important to them. You need to start by talking to the person to identify non-negotiables, as well as what would be nice but not essential. Don’t waste time on things that don’t matter to the person. Maybe living close to work and public transportation is a non-negotiable, however, available options are unaffordable unless the person is willing to have a roommate. Are they prepared to consider that? Perhaps the only pet-friendly rentals aren’t in the exact part of town where someone wants to live.
What sacrifices might someone be willing to make? Maybe the ideal home isn’t even in the community where the person has lived their whole life. How much does that matter to them? No home is perfect; it’s important to weigh the pros and cons and support people to pick the best option for them. You need to acknowledge fears and find ways to mitigate doubts and anxieties. Take the time to do it right, using every resource available. Be prepared to advocate and be creative. People should spend time visiting and really submersing themselves in all the possibilities – the community culture, what the area has to offer, as well as likely future housing opportunities.
Tips For A Successful Transition
A successful transition from a segregated setting to the ideal home doesn’t happen overnight. Understanding what people want to access and what their budget will permit is crucial. And don’t forget about relationships important to the person and how close they want and need to live to those connections – family, friends, paid workforce etc. People should be encouraged to talk with someone that has already made the transition from segregated to community living. By talking to others that have been through this change, people can glean excellent information and ideas that might not be gained through other channels.
This is true for families and support providers as well. Everyone can learn from both the successes and mistakes that others have experienced. State systems and options vary greatly so it’s important to research what is going on outside your community, county, and state when looking for creative solutions. Technology is also available that might help someone live more economically and independently. Consider everything learned and how this knowledge can help all involved make better-informed choices.
After The Boxes Are Unpacked
Once the move happens, the work does not stop and ongoing support is key. In addition, advocacy is vital and it is everyone’s job. Family members and friends should consider checking in on loved ones more frequently and as often as the person desires. Funding for supports and services must be tailored to the new living situation and adjusted consistent with changing needs and costs. Tied to this, people need to be assured of a fairly compensated, stable direct-support workforce.
Perhaps most important of all is recognizing that change is constant, and knowledge gives people control. The best choice available today may not be what a person wants and needs in the future. Stay informed, continue to ask people what’s important to them (because that too, can change), and advocate. Doing so will encourage and ensure open, responsive, and supportive communities for all. The guidance shared here also applies to inclusive and integrated community employment for people with disabilities.
Transformation in Employment
By Jennifer Quigley
The case for transformation from sheltered workshops and enclaves is clear. The data from Personal Outcome Measures® interviews shows that people in integrated settings are the most likely to have chosen to actually be there. In fact, in our 2019 Personal Outcome Measures® interviews, 74% of people in competitive employment and supported community employment choose to be there, while only of a fraction of people in enclave work, day programs, and sheltered work did so (see figure). When an organization utilizes Personal Outcome Measures® interviews to learn about people and their desires around work and then acts upon what is learned, these numbers will become better aligned and people will be more likely to choose where they work.
The Relationship Between Current Work Setting and Choosing Where to Work Outcome
While the case for transformation is clear, the path to transforming employment services isn’t the same for every organization. They must first determine why they are looking to transform and develop a shared vision of what services will accomplish after the transformation. This vision development process must not only include organizational leadership but also people supported, direct support staff, family members, community connections, and other stakeholders.
10 Elements of Transformation
In 2018, The Institute for Community Inclusion partnered with the Arc of the United States for a review of successful transformation of sheltered workshops into competitive integrated employment. Their research found ten elements of a successful sheltered workshop transformation:
- “Clear and consistent goals;
- An agency culture that supports inclusion;
- Active, person-centered job placement;
- A strong internal and external communications plan;
- Reallocated and restructured resources;
- Ongoing professional development of staff;
- Customer focus and engagement;
- Performance measurement, quality assurance and program oversight;
- A holistic approach; and
- Multiple and diverse community partnerships” (Kamau & Timmons, 2018)
While the path and timeframe differed for the organizations involved in the research project, these elements of success were present in each successful transformation.
Your path to community employment will be unique and there will be challenges along the way. Frank A Clark, an American lawyer and politician, once said “If you find a path with no obstacles, it probably doesn’t lead anywhere.” Relying on the resources available for you to overcome these obstacles is essential and the positive impact this journey will have on the people you support will be immeasurable.
Disability Rights Moving Forward
The ADA was introduced 30 years ago to promote justice, equality, and inclusion of people with disabilities; while much progress has been made, we still need to strive to uphold these ideals and make sure they are realized. Organizations transitioning from segregated home and work settings to inclusive settings is just one of many steps necessary to do so. We invite you to also visit ADA 30 In Color to read essays from disabled Black, Indigenous, People of Color (BIPOC) writers about the legacy of the ADA, and how to promote disability rights moving forward.
- Gaeta, A. & Moss, H. (2019). The Americans with Disabilities Act remains crucial in the fight against ableism 29 years later. Disability Visibility Project. https://disabilityvisibilityproject.com/2019/12/01/the-americans-with-disabilities-act-remains-crucial-in-the-fight-against-ableism-29-years-later/
- Harris Interactive. (2010). Kessler Foundation/National Organization on Disability 2010 survey of employment of Americans with disabilities. https://www.shrm.org/ResourcesAndTools/hr-topics/employee-relations/Documents/surveyresults.pdf
- Kamau, E., & Timmons, J. (2018). A roadmap to competitive integrated employment: strategies for provider transformation. Bringing Employment First to Scale, 20. Boston, MA: University of Massachusetts Boston, Institute for Community Inclusion. https://scholarworks.umb.edu/cgi/viewcontent.cgi?article=1034&context=thinkwork&preview_mode=1&z=1549300605
- Pulrang, A. (2014). The Americans with Disabilities Act: Three disappointments, three victories. Disability Visibility Project. https://disabilityvisibilityproject.com/2014/07/26/guest-blog-post-the-americans-with-disabilities-act-three-disappointments-three-victories-by-andrew-pulrang/
- Wong, A. (2015). Angry ADA minute (7/15/15). Disability Visibility Project. https://disabilityvisibilityproject.com/2015/07/12/alice-wong-angry-ada-minute-71515/
Transforming Employment (With Tools to Make It Happen)
This webinar focuses on utilizing the concepts of the Transformational Leadership Model in moving from traditional site-based day programs to more person-directed day services and employment. It also gives attendees tools to use as they begin to develop their own plan.View The Webinar
Americans With Disabilities Act: Promoting Integration and Inclusion