This is an exciting opportunity to make a valuable difference in the lives of individuals and families living with Fragile X Syndrome: the most common inherited cause of learning disability and leading genetic cause of autism. Through this role you will support and empower families with a child with Fragile X Syndrome, through providing information and practical guidance via our national helpline.
Just by knowing that there is someone on the end of the phone ready and willing to help or just listen means the world. Some days I feel quite lonely as a parent and unsure of what the future holds, but now that I know there is a network of understanding folk, this new journey a lot easier.
- Parent of a child with Fragile X who has received support via our Helpline.
No prior knowledge of Fragile X Syndrome is required (you will receive training via colleagues and experts in the field), but strong people skills and an understanding attitude are essential.
If you would like to know more about the role, we encourage you to contact us for an informal chat (info@fragilex.org.uk; 01371875100)
Job description
Job Title: Families and Professionals Advisor (Child Enquiries)
Salary: £19,000 (3 days per week).
Place of Work: Rood End House, Great Dunmow, Essex
Purpose of Job: To provide information and practical guidance to support and empower individuals and families living with fragile X, and the professionals who support them.
About the Charity: Fragile X Syndrome is the most common inherited cause of learning disability and is associated with autistic-like features. Fragile X is a family of conditions and multiple members of families may experience differing effects of the genetic change. We are the only charity dedicated to individuals and families living with Fragile X, across the UK.
Main Duties and Responsibilities
To respond to all enquiries from parents and carers of children affected by fragile X syndrome and some enquiries about carriers of fragile X in conjunction with the society’s Families and Professionals Advisor for Adults. To provide in-depth telephone emotional support, as well as practical advice and guidance This will include enquiries from those who are newly diagnosed and enquiries from families/carriers with an existing diagnosis
To provide an individual support service. This service will include responding to enquiries received by telephone, email or social media. This may include writing reports and letters of support and to directing families appropriately for further advice.
To support families and carers of children affected by fragile X when they are dealing with local professionals within health, education and social services. To liaise with those professionals as necessary and appropriate.
To ensure that the Fragile X Society offers a culturally sensitive, easily accessible service to individuals affected by fragile X syndrome, their families and carers and professionals working with individuals affected by fragile X
To respond to all enquiries from professionals working with/supporting children with fragile X syndrome and some enquiries from professionals working with/supporting carriers of the syndrome
To keep abreast of legislative changes in education, social services and benefits; and to monitor and assess current issues affecting education, social services and benefits.
To support with the development of information resources and writing of articles for the newsletter. This will include sourcing information about other organisations and their services.
To maintain accurate records of work for monitoring, co-ordinating and reporting purposes.
To participate in expanding and developing the role of the Families and Profesionals Advisors as the Society requires.
Skills and Experience
Essential
Experience of working with children with learning disability or autism and their families.
Clear and sensitive communication skills: both verbally and in written format.
To be able manage sometimes complex enquiries in an empathetic and non-judgemental manner.
Active listening skills.
Ability to manage own workload effectively, including prioritising
Ability to creatively problem solve.
Ability to build up repaltionships with families by phone and email.
Awareness of safeguarding issues.
Ability to work collaboratively within a small team.
Basic IT competence including: Word, Excel, Outlook.
Desirable
Background in/ knowledge of special education.
Background in/ knowledge of social care services.
Awareness of children's health services.
Experience in working as part of a helpline service.
Experience in producing practical resources such as social stories.
How to apply
Please send a CV and cover letter to Becky Hardiman (CEO) via this advert. Applications deadline is Sunday 16th September. Interviews will take place in early October (Date TBC) at the Fragile X Society offices in Great Dunmow, Essex.