Ethics for Specialized Family Care Providers
Preamble
Direct Support Professionals (DSPs) who support people in their communities are called upon to make independent judgments on a daily basis that involve both practical and ethical reasoning. The people who assume the support role must examine and call upon values and beliefs, as well as creative vision, to assist them in the complex work they perform.
A primary purpose of the DSP is to assist people who need support to lead self-directed lives and to participate fully in our communities and nation. This emphasis on empowerment and participation is critical because the prejudices of society form powerful barriers that prevent many people with mental or physical disabilities from enjoying a high quality of life. And, too often, the very social policies and service systems designed to help can create other barriers.
Therefore, it must be the mission of the DSP to follow the individual path suggested by the unique gifts, preferences, and needs of each person they support, and to walk in partnership with the person, and those who love him or her, toward a life of opportunity, well-being, freedom, and contribution. Unfortunately, there have been no set criteria to guide these journeys as there are for other professional groups (such as doctors, nurses, service coordinators, and social workers) who have intimate knowledge of and responsibility for another person’s emotional, financial, or physical being. There is no other position today in which ethical practice and standards are more important than direct support. DSPs are often asked to serve as gatekeepers between people needing support and almost every aspect of their lives, including access to community, personal finances, physical well-being, relationships, employment, and everyday choices. The whole landscape of a person’s life can change with the coming and going of these critical supports for people.
As a result of these work duties, DSPs face ethical decisions on a daily basis 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 those supported. In order to maintain the promise of partnership and respect that must exist in a helping relationship, a strong ethical foundation is critical to help DSPs navigate through the maze of influences that bombard them.
This issue has led to the efforts on the part of the National Alliance for Direct Support Professionals (NADSP) to identify the kinds of ethical situations that DSPs face and to develop a set of ethical guidelines. The NADSP convened a national panel of DSPs, advocates, families, Professionals, and researchers who constructed this code of ethics. Focus groups and surveys regarding the draft language were conducted throughout the country and were integrated to create the final code. This Code of Ethics is intended to serve as a straightforward and relevant ethical guide, shedding some light on the shared path to a self-directed life. It is intended to guide DSPs in resolving ethical dilemmas they face every day and to encourage DSPs to achieve the highest ideals of the profession.
The skills and knowledge of community support practice must be joined with the ethical principles to create the environment needed to fully support people. To do so effectively, we must all work toward recognizing DSPs as professionals who have skills, knowledge, and values that constitute a unique and important profession. There must be a commitment to hiring, developing, and supporting DSPs who have a healthy sense of their own worth and potential, and the worth and potential of the people they support, and who can infuse these beliefs into practice. DSPs themselves must know that it is part of their role to foster a spirit of cooperation and mutual responsibility with other DSPs regarding ethical practice.
Direct Support Professionals, agency leaders, policymakers, and people receiving services are urged to read the Code and to consider ways that these ethical statements can be incorporated into daily practice. The beliefs and attitudes that are associated with being an effective human service professional are the cornerstones of this code. This code is not the handbook of the profession, but rather a roadmap to assist us in staying the course of securing freedom, justice, and equality for all.
Ethical Principles
As a DSP, I will:
- Recognize that each person must direct his or her own life and support and that the unique social network, circumstances, personality, preferences, needs and gifts of each person I support must be the primary for guide the selection, structure, and use of supports for that individual.
- Commit to person-centered supports as best practice.
- Provide advocacy when the needs of the system override those of the individual(s) I support, or when individual preferences, needs or gifts are neglected for other reasons.
- Honor the personality, preferences, culture and gifts of people who cannot speak by seeking other ways of understanding them.
- Focus first on the person, and understand that my role in direct supports will require flexibility, creativity and commitment.
As a DSP, I am responsible for supporting the emotional, physical, and personal well-being of the individuals receiving support. I will encourage growth and recognize the autonomy of the individuals receiving support while being attentive and energetic in reducing their risk of harm.
As a DSP, I will:
- Develop a relationship with the people I support that is respectful, based on mutual trust, and that maintains professional boundaries.
- Assist the individuals I support to understand their options and the possible consequences of these options as they relate to their physical health and emotional well-being.
- Promote and protect the health, safety, and emotional well-being of an individual by assisting the person in preventing illness and avoiding unsafe activity. I will work with the individual and his or her support network to identify areas of risk and to create safeguards specific to these concerns.
- Challenge others, including support team members (e.g. doctors, nurses, therapists, co- workers, family members) to recognize and support the rights of individuals to make informed decisions even when these decisions involve personal risk.
- Be vigilant in identifying, discussing with others, and reporting any situation in which the individuals I support are at risk of abuse, neglect, exploitation or harm.
- Consistently address challenging behaviors proactively, respectfully, and by avoiding the use of aversive or deprivation intervention techniques. If these techniques are included in an approved support plan I will work diligently to find alternatives and will advocate for the eventual elimination of these techniques from the person’s plan.
As a DSP, I will support the mission and vitality of my profession to assist people in leading self-directed lives and to foster a spirit of partnership with the people I support, other professionals, and the community.
As a DSP, I will:
- Be conscious of my own values and how they influence my professional decisions.
- Maintain competency in my profession through learning and ongoing communication with others.
- Assume responsibility and accountability for my decisions and actions.
- Actively seek advice and guidance on ethical issues from others as needed when making decisions.
- Recognize the importance of modeling valued behaviors to co-workers, persons receiving support, and the community at-large.
- Practice responsible work habits.
As a DSP, I will support the mission and vitality of my profession to assist people in leading self-directed lives and to foster a spirit of partnership with the people I support, other professionals, and the community.
As a DSP, I will:
- Be conscious of my own values and how they influence my professional decisions.
- Maintain competency in my profession through learning and ongoing communication with others.
- Assume responsibility and accountability for my decisions and actions.
- Actively seek advice and guidance on ethical issues from others as needed when making decisions.
- Recognize the importance of modeling valued behaviors to co-workers, persons receiving support, and the community at-large.
- Practice responsible work habits.
As a DSP, I will promote and practice justice, fairness, and equity for the people I support and the community as a whole. I will affirm the human rights, civil rights and responsibilities of the people I support.
As a DSP, I will:
- Help the people I support use the opportunities and the resources of the community available to everyone.
- Help the individuals I support understand and express their rights and responsibilities.
- Understand the guardianship or other legal representation of individuals I support, and work in partnership with legal representatives to assure that the individual’s preferences and interests are honored.
As a DSP, I will respect the human dignity and uniqueness of the people I support. I will recognize each person I support as valuable and help others understand their value.
As a DSP, I will:
- Seek to understand the individuals I support today in the context of their personal history, their social and family networks, and their hopes and dreams for the future.
- Honor the choices and preferences of the people I support.
- Protect the privacy of the people I support.
- Uphold the human rights of the people I support.
- Interact with the people I support in a respectful manner.
- Recognize and respect the cultural context (e.g. religion, sexual orientation, ethnicity, socio-economic class) of the person supported and his/her social network.
- Provide opportunities and supports that help the individuals I support be viewed with respect and as integral members of their communities.
As a DSP, I will assist the people I support to develop and maintain relationships. As a DSP, I will:
- Advocate for the people I support when they do not have access to opportunities and education to facilitate building and maintaining relationships.
- Assure that people have the opportunity to make informed choices in safely expressing their sexuality.
- Recognize the importance of relationships and proactively facilitate relationships between the people I support, their family and friends.
- Separate my own personal beliefs and expectations regarding relationships (including sexual relationships) from those desired by the people I support based on their personal preferences. If I am unable to separate my own beliefs/preferences in a given situation, I will actively remove myself from the situation.
- Refrain from expressing negative views, harsh judgments, and stereotyping of people close to the individuals I support.
As a DSP, I will assist the people I support to direct the course of their own lives.
As a DSP, I will:
- Work in partnership with others to support individuals leading self-directed lives.
- Honor the individual’s right to assume risk in an informed manner.
- Recognize that each individual has potential for lifelong learning and growth.
As a DSP, I will advocate with the people I support for justice, inclusion, and full community participation.
As a DSP, I will:
- Support individuals to speak for themselves in all matters where my assistance is needed.
- Represent the best interests of people who cannot speak for themselves by finding alternative ways of understanding their needs, including gathering information from others who represent their best interests.
- Advocate for laws, policies, and supports that promote justice and inclusion for people with disabilities and other groups who have been disempowered.
- Promote human, legal, and civil rights of all people and assist others to understand these rights.
- Recognize that those who victimize people with disabilities either criminally or civilly must be held accountable for their actions.
- Find additional advocacy services when those that I provide are not sufficient.
- Consult with people I trust when I am unsure of the appropriate course of action in my advocacy efforts.