Frontline Initiative: DSPs Using the NADSP Code of Ethics

Amy Hewitt, author.

Did you know that since 2001, there has been a code of ethics for direct support professionals (DSPs) who provide support to persons with disabilities in the United States? My guess is that most employers and the DSPs who work for them in the United States are not aware that this code exists and that most states do not require training on it, but they should.

I had the privilege of facilitating its development more than two decades ago, with the support of the President’s Committee on Mental Retardation (now the President’s Committee for People with Intellectual Disabilities) and many other national partners. Gary Blumenthal, serving as executive director of the committee, had the vision that we needed to train DSPs as leaders, and he provided an opportunity for us to convene in Washington D.C. At that time, we were also involved in the development of the Community Support Skill Standard (CSSS), led by the Human Services Research Institute (HSRI). These competencies identified the knowledge, skills, and abilities required of DSPs, and illustrated the complexity of these roles. At the University of Minnesota, we were developing Frontline Initiative, a professional journal that provides DSPs with a unique body of knowledge, and the College of Direct Support, an online training curriculum designed to teach the competencies identified in the CSSS. Together, these efforts were designed to evolve the profession of direct support.

Commonality with Other Professions

When we looked around at other professions, such as teaching, medicine, nursing, firefighting, social work, and many others, we saw that there were common characteristics across these professions, including:

Specialized training, education, and practical experience, check

A unique body of knowledge and skills required and used in service to others, check

Code of ethics that guides decision-making and actions, blank, not checked

Required ongoing training and development, check

Clearly defined membership that is often recognized by a professional association, check

In our effort and commitment to professionalize the occupation of direct support, we recognized that we were on track for most of these components, but did not have an ethics code. When the opportunity arose to convene a group of DSPs, advocates, families, professionals, and researchers, we knew we wanted to use this opportunity to develop one.

How was the NADSP Code of Ethics Developed?

To prepare for the convening stakeholder group, a short survey was distributed to DSPs, seeking information and stories about the difficult situations they experience in their work.

The questions asked were:

• What are the most difficult decisions you have experienced in your efforts to provide quality support?

• Are there specific problems or dilemmas you typically face that you could use help with?

• Can you describe some situations that often or occasionally seem overwhelming or confusing to you?

• How could a code of ethics be made most useful to direct support professionals?

Additionally, focus groups were conducted with DSPs and supervisors across the country to identify possible areas in which they faced ethical dilemmas. Using the results of the focus groups and survey, we created scenarios that helped stakeholders guide DSPs in resolving ethical dilemmas they face every day and encouraged them to achieve the highest ideals of the profession. These scenarios focused on issues shared by DSPs in areas such as confidentiality, respect, advocacy, health issues, relationships, person-centeredness, responsibility, and justice/fairness and equity.

Following the stakeholder convening, an initial draft was written. Subject matter experts who provided direct support or supervised DSPs were then asked to review and edit the draft; common suggested changes were integrated into the draft document.

Next, a validation survey was distributed through numerous national organizations:

• AAMR (now AAIDD), AAUAP (now AUCD)
• ANCOR
• The Arc
• Association of Public Developmental Disabilities Administrators
• CARF International
• Council for Standards in Human Service Education
• HSRI
• National Association of State Directors of Developmental Disabilities Services
• National Association of State Directors of Vocational Technical Education Consortia
• National Center for Educational Restructuring and Inclusion
• National Center for Paraprofessionals in Education
• Association for Child and Youth Care Practice
• National Organization of Human Services Educators
• PCMR
• Reaching Up
• Self-Advocates Becoming Empowered
• TASH
• UCPA

These organizations gave feedback for understanding if the draft was clear, relevant, and important, and that it addressed ethical issues confronted by DSPs. The results of the validation study were used to finalize the COE. A series of workshops were also conducted to support the validation process. In 2015, the NADSP again convened a stakeholder group to review and update the code, and the revisions were published in 2016.

Throughout this process, a few things were clear to all of us involved in the development of the NADSP’s Code of Ethics. DSPs faced ethical dilemmas in the course of their everyday work, they understood the complexity and importance of their role and behavior as professionals, and they saw the need for an ethics code. Most importantly, they had the solutions and knew what needed to be included in the COE.

Throughout this process, a few things were clear to all of us involved in the development of the NADSP’s Code of Ethics. DSPs faced ethical dilemmas in the course of their everyday work, they understood the complexity and importance of their role and behavior as professionals, and they saw the need for an ethics code. Most importantly, they had the solutions and knew what needed to be included in the COE.

Why was Developing the COE Important?

DSPs who support people in the community will always be called upon to make independent judgments involving both practical and ethical reasoning. They assume this support role daily and must examine and call on deeply-held values and beliefs, as well as creative vision, to perform complex duties and the personal interactions that are the core of their work. The beliefs and attitudes of an effective human service DSP are the cornerstones of the code. It is not the handbook of the profession, but rather a roadmap to assist DSPs in staying the course of securing freedom, justice, and equity for everyone they support.

DSPs face ethical dilemmas every day in their work to support people with intellectual and developmental disabilities to live their best lives. It is important to understand that these dilemmas cross all areas of their lives. Here are a few examples:

• A DSP supports Miguel, a very bright, 25-year-old man. The DSP has observed that Miguel is capable of making most of his own decisions. His mother and father are his legal guardians. Although his mother seems a bit more relaxed about letting Miguel handle many of his own decisions, the DSP has observed his father to be more protective. Miguel wants to subscribe to a dating service and has already made the arrangements to do so. His mother and father stop by to see him one evening. The DSP knows they are opposed to Miguel dating at all, and would strongly object to a dating service.
• A DSP works evenings with a colleague named Allister, supporting people with disabilities. When arriving at work, Allister never knocks on the front door before entering the house.
• A DSP works with Josh, who has been diagnosed with bipolar disorder and autism. Josh has been prescribed lithium for his bipolar disorder but recently stopped taking it. Josh says that he feels better without it.
• A DSP works with Seth, who has significant physical disabilities, uses a wheelchair, and requires assistance with dressing and grooming in the morning. If he had a motorized wheelchair, he could go out on his own and go more places, but for now, he has to rely on a DSP to take him everywhere. The DSP approaches his case manager with the idea of buying a motorized wheelchair. The case manager replied to the request by saying, “I just don’t think that’s a priority right now.”

Scenarios like these routinely present ethical dilemmas for DSPs, putting them in the difficult position of advocating for the people they support, even when doing so puts them at odds with their employers, guardians, co-workers, or even their own beliefs. And they do it for paltry pay, unaffordable benefits, and for too many people supported and too many work hours because of incredibly high turnover and vacancy rates.

They don’t even have a name. DSPs do not have an occupational title recognized by the U.S. Department of Labor. The job title of DSP is not used by all employers. As such, most people in the United States do not know who DSPs are, or what they do. DSPs and their allies have been advocating for professionalization of this workforce for several decades and having the ethics code is essential in this effort.

DSPs have complex jobs for which high skill and the ability to problem-solve in the moment, without consultation with others, is critical. These skills have been amply demonstrated, most recently during the COVID-19 pandemic, when they had to change their practice quickly and frequently to keep people safe from harm. Additionally, community support for persons with intellectual and developmental disabilities places expectations that DSPs use person- and family-centered practices that are culturally responsive, are competent in helping people make supported decisions, and can implement positive supports daily. Far too often, these expectations are not supported with training, mentorship, and supervision. The COE is a tool and guiding resource to assist DSPs with problem-solving and decision-making, and it frames opportunities for conversations with others in their profession.

Writing this article was a true test of my memory. As such, I reached out to individuals who were in the room as we were drafting the COE and asked each of them two questions. Their answers are below.

Why Does the Field of Direct Support need an Ethical Code?

Mark Olson, education specialist at the University of Minnesota, and a former DSP:

“It was a place to start in professionalizing the field so that it can get the recognition it deserves.”

Joe Macbeth, executive director of NADSP, and a former DSP:

“DSPs must exemplify ethical practice, high standards, and creative vision as they partner with the people they support to access the community and make everyday choices about their personal finances, physical well-being, social and intimate relationships, and employment. The entire landscape of a person’s life can change through ethical and intentional direct support services. As a result of these work duties, DSPs face ethical decisions daily and consistently feel the tension between the ideals of the profession and its practice. There are numerous pressures coming from organizations, government, social policy, and societal prejudice that can shift focus and allegiance away from the people who are being supported. To maintain the promise of partnership and respect that must exist in a supportive relationship, a strong ethical foundation is critical to help DSPs navigate through the maze of influences that bombard them.”

Val Bradley, president emeritus of Human Services Research Institute (HSRI):

“The provision of support requires not only the acquisition of skills, but also a sense of the larger purpose and values that govern the work. A code of ethics not only speaks to why the work is important, but emphasizes the humanity of the individuals being supported. A sense of that humanity is needed to ensure that people with intellectual and developmental disabilities (IDD) are treated with respect – respect for their individual gifts, needs, and goals. A code of ethics provides that needed context.”

Cliff Poetz, community specialist at the University of Minnesota, and former self-advocate:

“ We want staff who show up on time and help us get the stuff done we need to get done. We want people who are paid enough to stay so they like what they are doing. We want people who respect us and are respected for what they do and the pay they earn.” (reprinted quote from Impact article, 2008)

Marianne Taylor, past director and author of Community Support Skills Standards at HSRI:

“Direct support professionals work in many settings with people, and often without much access to their supervisor or colleagues. Having guidelines as a basis for making decisions is extremely helpful when working with this level of independence. They help DSPs develop a moral compass to develop good decision-making skills that are in line with practice standards in our profession.”

Marci Whiteman, direct support professional:

“It is important to have a code of ethics for DSPs because people with IDD expect the DSP they hire to support them in their life will always show them the greatest of respect and value as a human being. With a standard code of ethics for all DSPs to follow, our communities show that DSPs are trusted professionals who value all people. DSPs can feel united as a profession and hold each other accountable when they have a code of ethics.”

In Light of Pressing Issues Facing DSPs Right Now, How Does an Ethical Code Help Ground Professional Practice?

Marci Whiteman, direct support professional:

“Many DSPs are pushed to do more work than there is actual time for or to assist more people with IDD than one DSP can successfully support. An ethical code is a great tool to help organizations and agencies employing DSPs to better understand how much is too much, or how each person being supported is not being valued as an individual if the DSP cannot follow the standard COE in their work.”

Marianne Taylor, past director and author of Community Support Skills Standards at HSRI:

“The code of ethics connect direct support professionals to a profession and a professional status.”

Joe Macbeth, executive director of NADSP, and a former DSP:

“A code of ethics is basically a written collection of rules, principles, values, and expectations that any profession considers significant. More and more, DSPs are working independent of supervision, so the COE provides a framework and a standard for ethical decision-making while DSPs are doing their work. In addition, it informs the people they support, their family members, and other external stakeholders what is valued by this profession. Of course, the effectiveness of any professional code of ethics depends on whether all practitioners follow the tenets and integrate them into daily practice. You can’t just read, sign it, and be considered to be ethical.”

Val Bradley, president emeritus of HSRI:

“A code of ethics gives DSPs a sense of purpose and mission, which for many people will give them a sense that they are part of something important and that they are making a difference in people’s lives. While DSPs face many challenges, including low wages, the COE binds them to their work in ways that aren’t present in other jobs. The fact that DSPs have a COE should be used to reinforce the importance of this workforce to legislators and other decision-makers. Finally, the COE provides a way to link skills with valued outcomes.”

Mark Olson, education specialist at the University of Minnesota, and a former DSP:

“The Code of Ethics helps DSPs focus on the concept of people's humanity and not their disability. It creates the expectation to do what is needed to support people to live the life they choose.”

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