The Batten Disease Family Association

Who we are

The Batten Disease Family Association (BDFA) is a family centred organisation, set up 26 years ago by parents of children with Batten disease. The BDFA offers informed guidance and support to families and the professionals who work with them, as well as actively raising awareness, and promoting research into the management of Batten disease to improve patient care pathways and ultimately find a cure.The BDFA provides emotional and practical support to families, delivered through our family support team. We are there at the very painful and confusing time around diagnosis and go on to support families through their journey, attending meetings with families, running workshops for professionals and facilitating a community for families to connect to each other. Families are grieving from the day they get the diagnosis and the BDFA is there to support from that point and through the loss of a child and beyond. As a result of the pressures of looking after a profoundly disabled children, families face financial challenge and we support them our family grant scheme. As the only patient organisation in the UK, we play a crucial role in lobbying government around access to treatments, shaping policy and supporting research into all forms of Batten disease. We have a wider impact on the rare disease sector working with 6 other national organisations to support families with rare diseases and influence work around access to treatments and early diagnosis.

Our mission is to enable children and adults who are affected by Batten disease to live life to the full and to provide families with the care and support they need so that they do not walk this path alone.

Equality, diversity and inclusion policy

Batten Disease Family Association (BDFA) Equality,
Diversity and Inclusion Policy
Our Commitment
We are committed to providing equal opportunities in employment and to
avoiding unlawful discrimination with this policy extending to the
community we support. Our aim is that the environment for employees
and families with everyone being treated with dignity and respect which is
an important aspect of ensuring equal opportunities, seeking both
inclusivity and diversity. We have a separate anti-harassment and
bullying policy, which deals with these other issues.
The Law
It is unlawful to discriminate directly or indirectly in recruitment or
employment because of a ‘protected characteristic’ which we extend to
the entire family community. The Equality Act defines the protected
characteristics as being age, disability, sex, gender reassignment,
pregnancy, maternity, race (which includes colour, nationality, caste and
ethnic or national origins), sexual orientation, religion or belief, or
because someone is married or in a civil partnership.
Discrimination after employment may also be unlawful, e.g. refusing to
give a reference for a reason related to one of the protected
characteristics.
It is also unlawful to discriminate against or harass a member of the
public or service user in the provision of services or goods or to fail to
make reasonable adjustments to overcome barriers to using services
caused by disability.
The duty to make reasonable adjustments includes the removal,
adaptation or alteration of physical features, if the physical features make
it impossible or unreasonably difficult for disabled people to make use of
services. In addition, service providers have an obligation to think ahead
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and address any barriers that may impede disabled people from accessing
a service.
Types of Unlawful Discrimination
 Direct discrimination is where a person is treated less favourably
than another because of a protected characteristic. However,
discrimination may be lawful if there is an occupational requirement
which is core to a job role and a proportionate means of achieving a
legitimate aim.
 Indirect discrimination means putting in place, a rule or policy or
way of doing things that has a worse impact on someone with a
protected characteristic than someone without one, when this
cannot be objectively justified.
 Harassment is where there is unwanted behaviour related to a
protected characteristic which has the purpose or effect of violating
someone’s dignity or which creates a hostile, degrading, humiliating
or offensive environment. It does not matter whether or not this
effect was intended by the person responsible for the conduct.
 Associative discrimination is where the individual treated less
favourably does not have a protected characteristic but is
discriminated against because of their association with someone
who does e.g. the parent of a disabled child.
 Perceptive discrimination is where the individual discriminated
against or harassed does not have a protected characteristic but
they are perceived to have a protected characteristic.
 Third-party harassment occurs where an employee is harassed by
third parties such as service users, due to a protected
characteristic.
 Victimisation is treating someone unfavourably because they have
taken some form of action relating to the Equality Act i.e. because
they have supported a complaint or raised a grievance under the
Equality Act 2010, or because they are suspected of doing so.
However, an employee is not protected from victimisation if they
acted maliciously or made or supported an untrue complaint.
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 Failure to make reasonable adjustments is where a rule or policy or
way of doing things has a worse impact on someone with a
protected characteristic compared with someone who does not have
that protected characteristic and the employer has failed to make
reasonable adjustments to enable the disabled person to overcome
the disadvantage.
Equal Opportunities in Employment
We will avoid unlawful discrimination in all aspects of employment
including recruitment, promotion, opportunities for training, pay and
benefits, discipline and selection for redundancy. Job descriptions will
avoid any unnecessary requirements (those unrelated to effective
performance) that may otherwise have deterred applicants. We will base
decisions on objective criteria. We will consider making reasonable
adjustments in recruitment as well as in day-to-day employment.
Service Users, Suppliers and Others
We will not discriminate unlawfully against service users using or those
seeking to use the services we provide. If community members are not
treated with respect and dignity by an employee, service user, suppliers,
contractor, visitor or others, or if you witness someone else not being
treated with respect and dignity, you are asked to report this to the Chief
Executive or a Trustee who will take appropriate action.
Training
We will provide information and guidance to those involved in recruitment
or other decision making where equal opportunities issues are likely to
arise to help them understand their responsibilities and to avoid the risk
of discrimination.
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Your Responsibilities
All staff are responsible for supporting the organisation in meeting its
commitment and avoiding unlawful discrimination. If you believe that you
have been discriminated against you should report this to the Chief
Executive or a Trustee as a grievance. We take any complaint seriously
and you will not be penalised for raising a grievance, even if your
grievance is not upheld, unless your complaint is both untrue and made in
bad faith.
If you witness what you believe to be discrimination you should report
this to Chief Executive or a Trustee as soon as possible.
Employees can be held personally liable as well as, or instead of, the
organisation for any act of unlawful discrimination. Employees who
commit serious acts of harassment may be guilty of a criminal offence.
Acts of discrimination, harassment, bullying or victimisation against
employees or service users are disciplinary offences and will be dealt with
under our disciplinary procedure. Discrimination, harassment, bullying or
victimisation may constitute gross misconduct and could lead to dismissal
without notice. Additionally, it is wise to remember that not all disabilities
are visible and / or obvious and care should always be taken to adopt
moral, responsible behaviour always and in all situations, especially where
the contact is remote (e.g., by telephone or some form of internet
interaction).