Useful Links & Resources
21 Together is dedicated to supporting families and professionals to provide the best possible support for people with Down’s syndrome.
This page is designed to help families and professionals navigate the wide range of support available.
It provides links to trusted information on benefits, funding, practical support, local authority services, and local and national charities, enabling families to access the right support when they need it.
Benefits
Disability Living Allowance
If you have a disabled child under 16, you may be able to claim Disability Living Allowance (DLA) for them. DLA has two components. The care component can be claimed from 3 months if your child has care needs which are more than most children of their age. The mobility component can be claimed from 3 years if your child has problems getting around.
Click here for the government information about DLA.
Click here for comprehensive guidance on claiming for DLA from the Down’s Syndrome Association
Personal Independence Payment
If your child is 16 or over, they may be able to claim Personal Independence Payment (PIP) instead of DLA.
Click here for comprehensive guidance on claiming for PIP from the Down’s Syndrome Association
Carer’s Allowance
If you are a carer for your disabled child and they receive the middle or higher rate care component of DLA, or the daily living component of PIP, you may be eligible for Carer’s Allowance. If you are thinking of taking up work, you may want to consider the effect it may have on your entitlement to Carer’s Allowance.
Here is the government information on Carer's Allowance
Tax Credits
The Child Tax Credit is a benefit for individuals with low incomes who are responsible for children. You can only get this if you have an existing Child Tax Credit or Working Tax Credit claim; otherwise, you should claim Universal Credit instead. You may get more Child Tax Credit if your child gets DLA or PIP. Make sure you tell the Tax Credit Office what rate of DLA or PIP your child is getting.
Here is the government information about Child Tax Credit
Blue Badge
This is a permit for those with disabilities which allows them to park nearer to where they need to go. If your child receives a higher rate mobility component for DLA, they can apply for a blue badge. Other factors linked to Down’s syndrome may also make your child eligible. Please contact us for advice if you’re not sure.
Here is the council’s information about applying for a blue badge
CEA Card
The UK Cinema Association (UKCA) and its members recognise that the effects of someone’s disability might make it difficult or impossible to attend the cinema without being accompanied, which is why the CEA Card scheme has been developed. Apply on the CEA Card website
Max Card
The Max Card is a discount card for families of children with disabilities. It can help you save money on great days out at castles, zoos, bowling alleys and more. These are available to any family of a disabled child or young person who is in receipt of disability benefit, or who has an EHCP.
Sign up for the Disabled Children’s Register here to receive a Max Card
National Trust - Essential Companion Pass
The Essential Companion pass makes it simple to bring one or two carers or companions with you, free of charge. Show the pass when you arrive, and your carer(s) or companion(s) won’t need to pay an entry fee. Find out more here
Benefits & Finance - DSA
The Down’s Syndrome Association has comprehensive guidance on benefits that can be claimed: Benefits & Finance - Downs Syndrome Association
Turn2us
Turn2us is a national charity that provides practical information and support to those of us facing financial shocks: Turn2us
Funding Support
Family Fund
Family Fund is a charity which gives discretionary grants to families with severely disabled children under 18, for items not supplied by statutory authorities. Usually, the grants are made to families on benefits, but the fund may also be able to help other families on low incomes.
KCF Grants
Kent Community Foundation has a funding streams that offer support to individuals and families who are financially disadvantaged to aid the purchase of an item/activity/respite benefit for the individual. This grant can only be accessed via referral from a professional.
Here is further information on the KCF Grant
Other Potential Grants
In the UK, we are fortunate that many charities and trusts provide grants for disabled children. Whether they have a learning, physical, emotional, or other life-limiting condition.
Practical Support
Kent Local Offer
The Kent Local Offer provides information for children and young people with special educational needs and disabilities (SEND) and their parents or carers in a single place. It shows families what they can expect from a range of local agencies including education, health and social care.
Other Local Offers near us:
The Pod: Children’s Therapies
We support children and young people to develop their skills to their full potential, so they can participate in everyday activities. We work in partnership with you, your child and any other important people in their life. The Pod has been developed by the Children’s Therapies Service, provided by Kent Community Health NHS Foundation Trust.
Red Book
The Personal Child Health Record (PCHR), commonly referred to as the "Red Book," is given to parents at the birth of their child in the UK. For children with Down’s syndrome, specific inserts are included to help track their health and development. These inserts are produced by the Down Syndrome Medical Interest Group (DSMIG) and contain vital information tailored to the needs of children with Down’s syndrome.
Click here to find out more and for a downloadable copy of the insert
Developmental Journal
This Developmental Journal for babies and children with Downs syndrome is a set of charts that families use to record what their child is able to do as time passes and they learn new things. It has been written to help parents and the professionals who work with them and is a tool to help families track and understand development in their child.
Health Passport
Developed by Widgit, My Health Passport has been designed to support and facilitate effective communication and shared understanding between the Child and Young Person, (CYP), family and professionals who are caring and providing support.
Click here to download the Health Passport for free
Short Breaks
Short breaks give children and young people with special education needs or disabilities (SEND) the chance to have fun and socialise away from home.
Symbol
Symbol UK is a leading provider of speech and language therapy services in the UK, offering specialised support for children and adults with learning difficulties and communication challenges. Since 1994, Symbol have been leading experts establishing groundbreaking services that champion possibilities for people with Down’s syndrome. As well as speech and language therapy, Symbol provides a short breaks service and summer break employment-focused camps for young adults: Symbol
Imago
Imago’s Short Breaks service gives young people (aged 8-19 years) a chance to have fun and a break from daily routine, and helps families to enjoy quality time, local activities, and connections with others: Children with disabilities - Imago
ROCC
ROCC is proudly part of the Rivermead Inclusive Trust family and currently offers school holiday and Saturday respite to families with children/young adults with SEND and complex disabilities across Medway and the surrounding areas: ROCC
Connect
Connect! Short Breaks is for neurodivergent children and young people aged 9-18 living in Kent. They offer a wide range of fun and inclusive activities that give children and their families the opportunity to connect with others who share similar experiences in a supportive setting: Connect! short breaks - Involve Kent
Parent Recommendations for Services
Our parents have kindly made a list of helpful and inclusive contacts in Kent for all types of services you may need. View our Parents’ Recommendation: Professionals List.
Free Webinars
21 Together is keen to ensure all families and professionals have as much, easily accessible, information as possible. As such we are committed to providing a bank of training workshops to share with you. You can access our training bank here.
DSA also provide a bank of FREE on-demand webinars that can be accessed here: On-demand Recorded Training Sessions - Downs Syndrome Association
Other Support
DSA
The Down’s Syndrome Association (DSA) supports all people who have Down’s syndrome, their parents and carers and the professionals who work with them, throughout their lives.
We are committed to improving the quality of life for people who have Down’s syndrome, promoting their right to be included on a full and equal basis with others: Down Syndrome Association
DSUK
Down Syndrome UK is a parent-led charity providing honest support and expert resources to families and professionals, empowering every child with Down syndrome to thrive: Down Syndrome UK
National Down Syndrome Policy Group
The NDSPG supports people with Down syndrome to have a say in the formation of policy in matters that impact their lives: NDSPG
Down Syndrome Education
DSE works to improve education for children with Down syndrome everywhere. They work to discover how and why development differs for children with Down syndrome, and how we can best help them to achieve their potential. They deliver evidence-based resources around the world that help families and professionals to provide effective teaching approaches and interventions: DSE
Kent PACT
Kent PACT is a forum for parents and carers of children and young people who have special educational needs and disabilities (SEND) within Kent local authority. Kent PACT is a way to empower you as parents and carers and enable you to have your say. The combined voices of Kent PACT are fed into how services are designed and delivered in Kent: Kent PACT
IPSEA
The leading charity in the field of SEND law in England. Here to help navigate the SEND system and secure the education your child is legally entitled to: IPSEA
iASK
Free impartial and confidential information, advice and support in Kent, about special educational needs and disabilities for children, young people up to age 25, and their parents and carers: iASK
Council for Disabled Children
The Council for Disabled Children is part of the National Children’s Bureau family. We are the umbrella body for the disabled children's sector with a membership of over 300 voluntary and community organisations and an active network of practitioners that spans education, health and social care. As a membership body, we provide a collective voice that champions the rights of children, young people and their families and challenges barriers to inclusion.: Council for Disabled Children
Mencap
Mencap provide services and activities to improve the lives and opportunities of children and adults with a learning disability, along with their families and carers.
There are a number of Mencap Network Partners, localised by Region. This page will help you find your local Mencap group.
We Are Beams
A local charity that supports disabled children, young people and their families with family advice, short breaks, direct payments and a short break unit: We Are Beams
Space 2 Be Me
A charity working across West Kent (mainly Maidstone, Tonbridge & Malling and Tunbridge Wells) with disabled children and young people with additional needs aged from birth to 25 and their families: Space 2 Be Me
Include Us Too
A local parent-driven charity providing information and support to disabled children, young people and their families in the areas of Ashford, Shepway and Dover: Include Us Too
For Us Too
A charity run by parents and carers of disabled children and young people who aim to empower families across East Kent: For Us Too
Dementia
People with Down's syndrome have a higher risk of developing dementia. The Alzhemier’s Society provides further information in this here
Wills & Trusts
21 Together are a registered charity at Free Wills, where you can create a free will and donate to our charity through the will (if you wish), and it is completely 100% free. Visit here: https://www.freewills.co.uk/charity/21together