Thirtieth Anniversary Issue on Progress and Priorities in Direct Support

Lessons from the frontline. That describes both the mission and the title of this article. Maybe we should call it “Back to the Future.” In direct support, much is different, yet much has not changed at all. As we look back on 30 years of the Frontline Initiative, we remember what our founder, John F. Kennedy, Jr. wrote. In 1996, he said, the work is to, “develop effective strategies to strengthen the role of direct support workers within an evolving service delivery system.” If we replace the word ‘worker’ with ‘professional,’ we could have written that today.

What is different?

Words. Words matter. The language used in early publications has evolved. We choose words that are current, culturally sensitive, and respectful. Those of us in this field have made tremendous progress in our awareness of how some words have evolved into insults and have removed these words from our vocabulary. Society in general has changed and moved to making certain words like the R-word taboo. However, a trend is bringing back this hate speech in the name of free speech and against the concept of “wokeness.” Fortunately, Frontline Initiative has demonstrated that our field and direct support professionals uphold respect for those we serve.

Access. Those early editions of Frontline Initiative were carefully printed, folded, addressed and stamped to be delivered to your mailbox. They were two-dimensional and static. Today’s issues are electronically delivered, interactive, beautifully illustrated, shareable, and electronically accessible for your convenience. Plus, each issue also has a built-in custom screen reader for anyone to use, regardless of their sight or reading abilities. While some worried about this change in the beginning, the difference has increased access and is in line with the current practice of professional publications.

DSP instead of DSW. To convey the title of direct support professional (DSP), “professional” means that the job comes with expectations. To view our work as a profession, a body of knowledge, credentialing, a Code of Ethics, and a set of competencies describe what we should know. In the 1996 inaugural publication of Frontline Initiative, John F. Kennedy, Jr. wrote about efforts to improve training and career opportunities for the workers dating back to 1989. Coalitions and other national networks started developing to build on the effort. He hoped for partnership between direct support workers and self-advocates and that this publication would “foster communication and networking among the millions of self-advocates and direct support workers from all around the country.”

Two years later, in an article on professionalizing the direct support profession, the idea was still relatively new in some ways. Yet instead of focusing on developing professionals, the focus has stayed more global on services to people with intellectual and developmental disabilities (IDD). Bill Gaventa noted in his 1998 article, Recovering the meaning of ‘Professional", that the origin of the word “professional” is to profess or vow. The distinction is important to move from “worker” to professional with a “clear set of values, principles, and commitments” that can be upheld in all contexts of support of people with IDD. Throughout the years, Frontline Initiative has emphasized our core belief in person-centered thinking whereby DSPs commit to walk alongside the people they support. Ideally, this aligns with services provided, but sometimes it does not. This is the place where the art form of the profession lives and keeping the core values and ethics is how the DSP navigates these moments.

Tony Anderson

Lisa Burke

Complexity. In past editions, articles focused on supporting people with complex needs were primarily to identify more effective ways to support people who rarely or never used spoken language to communicate their needs or thoughts. Many were described as being aggressive because they did things that hurt others, threw objects, destroyed property or endangered themselves. DSPs reflected on stress and emotional challenges but also on their satisfaction of breaking through and finding ways to connect and support the person. DSPs reflected on their ability to endure, build trust, and eventually being able to stay the course through a variety of person-centered approaches. These stories are just as relevant today as they were in the 1999 publication focused on Supporting People with Complex Needs. However, many of the people we support in the community today were not in the community 30 years ago. They were still in congregate living settings. Thanks to DSPs, people have more options and choices. We now need to be proficient in supporting people with IDD who also have mental health issues, personality disorders, addiction, experience poverty, have survived trauma, and who are aging, in addition to intellectual and/or developmental disabilities.

Isolation. DSPs work in greater isolation with less direct supervision than ever before. Decades ago, the primary work environment of DSPs was larger and congregated, and included people working in teams and shifts. There were co-workers nearby and supervisors “on the floor,” literally and figuratively. Governments were often the employers. But today, DSPs often work for private provider companies or even directly for the person they support. Past publications focused on supporting people to make their own decisions and highlighted the supported decision-making model as a framework to make this happen. The old model relied on the team, supervisors, and experts to inform DSPs about how to do their work. However, the true nature of person-centered support requires DSPs to make decisions in the moment, in collaboration with the individual they are supporting. DSPs need to handle emergencies and be accountable for the health and safety of the person they support. In addition, there are some more recent approaches to service delivery, such as Self-Directed Services, which positions the person supported as both the director and the recipient of the services. The DSP of today, who is grounded in the principles of person-centered thinking and professional ethics, will be able to meet these new challenges and thrive. DSPs still need their colleagues and other professionals to consult with, as any professional requires for continued quality job performance. However, often in today’s services they need to access their team before or after they have provide support.

DSP shortages. For 30 years, Frontline Initiative has been publishing articles on the workforce shortage. Some of those early articles could have been published yesterday. Reasons for workforce shortage remain the same today as they were years ago, “low wages, lack of recognition for their important work, poor supervision, lack of clear direction or job descriptions, problems with coworkers, and lack of training.” Recent efforts in many states have included initiatives to increase wages, publicizing the work of DSPs (often using National DSP Week as a springboard), and the creation of statewide certification and training programs. Over the past decade, there have been studies and journals dedicated to the causes and problems associated with DSP workforce shortages. In a Frontline Initiative article published in State-of-the-Art Definition, we said, “The dream of full inclusion and full citizenship in communities for individuals with disabilities and their families is in jeopardy because it is becoming more and more difficult to find, hire, and retain competent, caring DSPs.”

Today, workforce shortages often mean providers and employers hire out of desperation instead of choosing among qualified applicants. This practice not only harms people with disabilities and their families, but it undermines and diminishes the DSP profession. The workforce shortage can remove some people with disabilities from their communities and isolate them at home because they need a DSP to access their community. The segregation so many fought against for many years, demanding full participation, is now faced with this new form of segregation. Segregation is no longer caused by state institutional models of care but by the inability to attract and retain quality DSPs. There was a time when we waited for the community system to be built to replace the old state institution. Now people with IDD often are waiting for the workforce infrastructure to rebuild itself after so many DSPs left the profession during the pandemic.

What hasn’t changed?

As we note, the field of developmental services and the perspectives, settings, and even language have changed over time. However, many of the core values of the profession remain the same: person-centered thinking, self-determination, and full participation in the American experience. While our focus on initiatives and activities to advance the profession have been updated over the years, we still are working to enhance the status of DSPs and improving their competency through better access to high-quality educational experiences and lifelong learning. We still promote system reforms that provide incentives for training and education, increase compensation, and access to career pathways for DSPs through policy initiatives (e.g., legislation, funding practices). We continue to support development and implementation of a national voluntary credentialing process for DSPs. We are always looking to strengthen the working relationships between DSPs, people supported, families, and others.

Why keep trying?

Why are so many of us so steadfast in our focus and dedication to direct support and its professionals? First, there is still a lot of work to do. We still lack a national job description. There is no recognition of that title of DSP and what DSPs do within the U.S. Department of Labor. Why does it matter? Because without their recognition, there is no national data. Without national data, there is no federal recognition or funding to promote the profession. No national title means people can call our work whatever they want.

We need the next generation of torch runners. When we read the three decades of editions of Frontline Initiative, we see names of many authors who are still doing what they did back then: promoting DSPs and the profession. They have made elevating the profession their life’s work. Recently, we have lost some in our community, like John O’Brien, Rud Turnbull, and Dave Hingsburger, just to name a few. They challenged DSPs to make connections with principles they were learning and exemplifying. The next generation needs the next leaders. Maybe that is you, the reader.

It’s still all about one person at a time. It’s the DSP’s job, but it’s the life of the person supported! We now have a lot of people supporting direct support: self-advocates, families, the medical profession, related disability organizations, champions in policy and legislation, law enforcement, provider associations, educators, employers, behavioral health, funders, and many more So then, who is against the goals and mission of DSPs? Maybe almost no one once they understand the vision to support people to live in the community. This speaks to just how complex and large the challenge is. We all essentially want the same things but have only achieved partial success. But you are life-changing for the person you support. We sometimes forget about the great life we get to help someone have.

James Meadours, in the first issue of Frontline Initiative, talked about the impact DSPs have had on his life. When they engaged in a power struggle or treated him negatively, he felt bad and even angry at times. Today James is still fighting for the same things – to have mature, responsible, dependable DSPs support him. He has not given up, and neither will we. James values self-advocates working with DSPs to work through the times of struggle. He said he learned the most from his DSPs when they worked together during these struggles. He emphasized an important theme for the next 30 years of direct support: sustainability when DSPs and self-advocates partner together.