Equality and Human Rights Statement
1. Introduction
This statement affirms Dravet Syndrome Ireland’s (DSI) commitment to equality and human rights. It serves as a guide to embed equality and human rights, for directors, volunteers, participants and employees and beneficiaries in our work (hereinafter referred to as ‘stakeholders’).
It enables us to address our obligations under the Irish Human Rights Equality and Commission Act 2014 to have regard to the need to eliminate discrimination, promote equality of opportunity, and protect human rights in carrying out our functions.
2. Our Values
Our commitment to equality and human rights is motivated by five core values:
Dignity
Autonomy
Empowerment
Inclusion and
Social Justice
Dignity
DSI is about ensuring the dignity and value of people and Dignity is about people valuing others and themselves. It involves respect, acknowledgement of difference, and ensuring a sense of self-worth.
DSI shall ensure that through and in its work, people and communities are respected, valued, have a voice, and are treated equally.
· DSI is committed to treating all trustees, board members, employees, volunteers, beneficiaries of its work and all other stakeholders with dignity and in a manner that is free from harassment, sexual harassment, and discrimination.
DSI is committed to working through processes that respect the background, values, and opinions of people and communities equally and in a non-judgmental way.
DSI shall treat all trustees, board members, employees, volunteers, beneficiaries of its work and all other stakeholders with respect and in a respectful manner that takes their views and opinions into consideration.
DSI uses the United Nations Convention on the Rights of Persons with Disabilities and the Assisted Decision Making (Capacity) Act 2015 as a guide in formulating its policies and objectives in furthering its objectives.
Autonomy
Autonomy is about recognizing the will and preferences of all individuals and recognizing that everyone having access to the same set of choices and the freedom and capacity to make their own choices, provided such choices do not impact negatively on the rights of others.
DSI shall support persons and families of persons with Dravet syndrome to have real choices, support their capacity to make informed choices, and engage other agencies to similarly provide options and choices for people and communities.
DSI shall ensure that persons and families of persons with Dravet Sydrome together with the general public have access to information, knowledge and insights and have opportunities to inform choices made across the organisation and to make choices about their own lives and futures.
Empowerment
Empowerment is about creating the environment where people can raise issues that concern them without fear, have these issues taken into consideration by decision-makers, and participate in and influence decision-making.
DSI shall work to encourage participation and engagement of trustees, board members, employees, volunteers, beneficiaries of its work and all other stakeholders in an open, inclusive, and transparent way, in its own planning, programme development, and evaluation processes.
DSI shall support the empowerment of persons and family members of persons with dravet syndrome to empower themselves and work to achieve desired outcomes.
Inclusion
Inclusion is about diversity and community. It involves removing isolation and building a sense of belonging to community and promoting acknowledgement of diversity.
DSI shall work to remove barriers to inclusion, communicate these barriers to the wider public and relevant agencies, and act directly to address them or advocate to have them addressed.
· DSI shall ensure the diversity of trustees, board members, employees, volunteers, beneficiaries of its work and all other stakeholders’ work is acknowledged and accommodated.
DSI takes the principle of inclusion and diversity into account in adopting policies and carrying out its objectives.
Social Justice
Social justice is about the distribution and redistribution of resources and power in order to enable greater choices and improved outcomes for individuals and communities.
DSI works to aassess the distribution of resources and power against criteria that are just, based on needs, and involve positive action, and to advocate to ensure the distribution of resources and power is just.
DSI works to ensure positive outcomes for persons and family members of persons with dravet syndrome.
Implementing the Equality and Human Rights Statement
The first step in implementing this statement is to appoint a Director as a guardian and champion for this statement and its implementation.
An assessment of the equality and human issues pertaining to each of the five values and relevant to the functions of DSI will be prepared and kept up to date for use in implementing this statement.
In making these values live within the organisation, DSI will take steps to:
1. Communicate the statement:
o Put the statement on the website and make reference to the statement in all internal and external information materials, including the staff handbook.
o Use the organisation’s website as a tool to make these values visible within the organisation.
o Organise discussions of the statement within board/ trustee meetings to ensure a shared understanding of it among all trustees, board members, employees, volunteers, beneficiaries of its work and all other stakeholders
2. Engage trustees, board members, employees, volunteers, beneficiaries of its work and all other stakeholders with the statement:
o Develop case studies on how current initiatives of DSI give expression to these values and the statement.
o Organise yearly board meetings that include discussion on the statement and the challenge of putting these values into practice.
o Include a focus on this statement in induction of new board members, trustees, staff, volunteers and members.
3. Engage stakeholders with the statement:
o Bring the statement to the attention of community organisations that DSI works with and encourage their adoption of such a statement.
4. Bring the statement into planning and evaluation
o Apply the statement to ensure that its plans and funding applications are aligned with the statement and contribute to the objectives set for each of the values.
o Monitor and evaluate the implementation of its work plans against the statement and the objectives set for each of the values.