Information Services
Our Information Services are the beating heart of the Down’s Syndrome Association and the main point of contact with our members, professionals and anyone who has an interest or a questions about Down’s syndrome.
Information Services encompasses the following suite of services:
Helpline & Advocacy
Our helpline is a unique service: we are the only helpline that anyone can contact on any topic related to Down’s syndrome. Our knowledgeable Information Team will answer questions on any topic that arises throughout the whole lifespan of a person who has Down’s syndrome.
Contact with the helpline may be through telephone, email or video calls. Every call and query is different…a call may require a short chat, a detailed discussion, reassurance or follow up emails, research and letters.
Together with a team of specialist advisers, our Information Officers can offer advice about any aspect of living with Down’s syndrome, including:
- Support for expectant parents with a prenatal diagnosis or parents whose newborn has just been diagnosed
- Benefits advice
- Education and development
- Social care, day-to-day support for adults
- Rights
- Health. We also are able to make referrals to the UK & Ireland Down Syndrome Medical Interest Group (DSMIG).
- Speech, language and communication
- Complex needs
- Ageing and dementia
“Thank you so much for listening to me earlier today and for your gentle and thoughtful words. Talking to someone has given me a new perspective and you will never know how much I appreciate what you did for a complete stranger today.“
“I don’t know what I would have done over the years if I had not had the guidance and support of the DSA. I certainly don’t feel that my son would have had all the opportunities in life that he has had.“
Advocacy
The Information Team is always happy to write letters on your behalf in cases where you may be struggling to get the support you need.
Recent examples where we have written to Local Authorities on behalf of parents include:
Requests for parent carers needs assessments, child in need assessments and transition assessments where parental requests to their Local Authority have been turned down.
We lodged a stage 2 complaint with a Local Authority to challenge the validity of a parent carers assessment which had not resulted in any support for a single working parent. In this case, the evidence suggested the Local Authority had failed to consider aspects of statutory guidance when carrying out the assessment. The Local Authority has now agreed to a senior social work practitioner carrying out a new parent carers needs assessment for the parent.
Challenged a refusal by a Local Authority to carry out a transition assessment until a young person reached a certain age. The Local Authority had not gathered information about the individual young person before refusing an assessment. We have asked the Local Authority to reconsider their decision as it may be potentially unlawful. Such decisions must be based on individual circumstances not ‘blanket’ policies.’
“I would just like to say a massive thank you for your amazing help; I really appreciate everything that you have done for us as a family.
Times are difficult for all at the moment but when you have a child with additional needs things can feel so much more difficult. I am just doing my best as a mum and doing everything in my power to ensure my son gets a homely environment that will help with his development and every day life, I can only jump certain hurdles with the support from people like yourself and your team – you’re all amazing.
Thank you beyond words!“
Helpline: 0333 1212 300 (10am-4pm)
Email: helpline@downs-syndrome.org.uk
The helpline receives over 10,000 calls each year
on a wide range of topics divided into the following broad categories:
Facebook Groups
We support nearly 6,000 people who are members of nine private Facebook groups.
Each of our closed groups is tailored to a support a specific group of users.
Parents & carers of children from birth-11 years
Parents & carers of young people 12-18 years old
Adults who have Down’s syndrome aged 25+ & their parents/carers
Our Voice: for people who have Down’s syndrome aged 13+
Parents & carers of children & adults with Down’s syndrome, complex needs &/or autism
Parents & carers of young adults experiencing a form of mental regression
Parents & carers of people who have Down’s syndrome & dementia
DSA Maternity Professionals Facebook Group
DSA Healthcare Professionals Facebook Group
Information Resources
We publish a comprehensive range of information resources, most of which are free to download from our website. These resources are being constantly refreshed and updated and are authored by a wide range of specialists and experts.
The topics cover every aspect of living with Down’s syndrome – from pregnancy right through to old age and provide information from many perspectives – from the person
who has Down’s syndrome, their parents and carers, siblings and professionals.
The resources are widely used by our members in the UK and are so unique and
comprehensive that they are accessed by people around the world.
Campaigns & Consultations
Our current campaigns and consultations work includes:
- Health inequalities
- Health Alert!
- Inclusive Education
- It’s My Life
- NICE Stakeholder – clinical guidelines
- All relevant government consultations and inquiries
- Collaborations & memberships
