Frontline Initiative Ethics
Ethical Challenges in Support Agencies
OHI was founded out of Maine’s desire to “do the right thing” on behalf of citizens with the dual diagnoses of mental retardation and mental illness. Our mission continues to be helping people with disabilities to be freed from years of institutionalization in a variety of healthcare settings. Twenty-two years later, our agency continues to struggle with the day-to-day challenge of always doing the right thing. The “right thing” for us has never been premised on legal or regulatory descriptors. Ethics at OHI find their fundamental basis in morality — what we believe to be the deepest societal values. Doing the right thing has become increasingly complex! More and more frequently, we find ourselves asking, “Is this the right thing to do?” in at least three areas: Professional Ethics, Organizational Ethics, and Biomedical Ethics. Space does not permit an in-depth description of each of these areas, but, perhaps, a few examples will capture their essence —
- Professional Ethics. We promote frontline staff as professionals. We call them Direct Support Professionals (DSPs). We tell the Legislature that they deserve more money and benefits because they are professionals. We promote a career ladder so that they will call what they do a profession. Do we hold professional expectations? Yes! To get to that point, it took a year-long effort to identify the marks of a professional a process which resulted in a “Role of a Professional” job description. A professional ethical question that confronts our field in this time of drastic workforce shortages is whether it is ethical to actively recruit employees from other social service agencies. The answer for us is a resounding “no.” Simply put, it is not the right thing to do.
- Organizational Ethics. As flat funding continues, year after year, while we want to give deserving DSPs an annual raise, is it right to pad new individual budgets that are being submitted to the state so that we can spread excesses to valued employees? The answer is “no.” We must find another way.
- Biomedical Ethics. Not long ago, a parent of a young adult with autism informed us that she wanted our staff to take her son to the hospital over the course of several weeks to undergo a series of injections of secretin. She had heard that secretin ameliorates the affects of autism. Based on research, we knew that the only possible positive effects that were evident were in children and, even then, the research was questionable. There was no evidence of success with adults. Furthermore, her son has a phobia of needles. After much discussion, bringing the mother’s mandate to one of our Human Rights Committees, and doing further research, we made the decision that we simply could not participate in this treatment. This treatment was simply not the right thing to do! The treatment went forward with the mother and family members supporting the young man, but was not successful.
In the early years, without thinking about it, we developed our mission, values, and philosophy around “right thing” statements. As the years have passed, we have tried to instill ethics into our organizational fiber and throughout the culture of our corporate life.
A serious focus on ethics really began in 1997 when our Board granted a request for our Assistant Executive Director and I to attend a week long intensive bioethics course at the Kennedy Institute of Ethics at Georgetown University. Daily concerns were rising and as an agency we were also looking ahead to troubling times that were calling on us to make very difficult decisions — decisions that could ultimately make the difference between life and death; decisions that could influence the “system” to fund us or deny us funding; decisions that involved overlooking the lack of professionalism of an employee or, on the other hand, not tolerate that behavior; and decisions that could ultimately deny the persons we support their basic freedom, rights, and choices.
Since 1997, we have woven ethical decision-making, behavior, language, policy, and culture throughout OHI. All new staff receive an Ethics course during orientation that also includes exposure to our Ethics Policy, our Professionalism Statement, and the role of the OHI Ethics Committee (a committee comprised of a diverse group of individuals, including an ethicist). All DSPs within our agency were also asked to give feedback to the National Alliance for DSPs on its Draft Ethics Statement for DSPs and did so with great hope. The NADSP Ethics Statement has also become part of new employee orientation.
It is our belief that the essential character of services for a person with disabilities — particularly, residential supports — can be profoundly altered by the nature of a single decision about how to support that person. Michael Kendrick, a disability advocate, has written that each person has a “human identity that both precedes and transcends the identity ascribed to them by services and their processes.” We are mindful of this statement every day at OHI and try to be ever vigilant about doing the right thing.