Appendix 2 - Support groups, Training/Resources for professionals, Barnet organisations
For professionals:
DSMIG
Down Syndrome Medical Interest Group. A group of clinicians with a special interest in Down Syndrome, involved in training, and in producing and reviewing national surveillance guidelines www.dsmig.org.uk.
Downs Syndrome Association (DSA)
Tell it right, start it right campaign:
Training and support for delivering a positive diagnosis. Advice and training available for all those involved in delivering a diagnosis of T21.
References and useful resources for families
For Parents:
Downs Syndrome Association
Helping people with Down Syndrome to live full and rewarding lives, focusing solely on all aspects of living successfully with Down syndrome.
Helpline: 0333 1212 300 offers information, support and advice to people with Down Syndrome, their families and the people that support them.
Email: info@downs-syndrome.org.uk
They also can provide the red book Down Syndrome inserts and a new parent pack if you call them and register with them. Multiple online resources covering health, education, support, benefits – and a phone line.
Down's Heart Group
A small charity offering support and information (and supportline) relating to heart conditions associated with Down Syndrome. There is also an e-learning package designed to empower parents who have a child with Down Syndrome who are facing congenital heart surgery Information Sheets - Down's Heart Group Tel: 0300 102 1644 Email: info@dhg.org.uk
Down Syndrome International
A UK based international disabled people's organisation, comprising a membership of individuals and organisations from all over the world, committed to improving quality of life for people with Down Syndrome, promoting their right to be included on a full and equal basis with others.
World Down Syndrome Day
About WDSD - World Down Syndrome Day
Mosaicism in Down Syndrome
In Down Syndrome, mosaicism means that some cells (rather than ALL) of the body have trisomy 21 and some have the typical number of chromosomes. This affects about 2% of those with Down Syndrome. Little research in this group to predict longer term outcomes eg with Speech and language or cognition and what research is available is quite mixed.
International Mosaic Down Syndrome Association
Mosaic Down Syndrome
Diagnosis - supporting parents and relatives
Looking forward to your baby {Down’s Syndrome Association]
Support for professionals in delivering a positive diagnosis
Tell it Right, Start it Right [Down’s Syndrome Association]
Support for parents in telling friends and family
Down Syndrome: A leaflet for friends and family [Down’s Syndrome Association]
Information and Support for all
Positive about Down Syndrome [Positive About Down Syndrome]
Benefits and financial help:
DSA - https://www.downs-syndrome.org.uk/about-downs-syndrome/lifes-journey/benefits-finance/
Barnet Local Offer (www.barnetlocaloffer.org.uk) Includes information on the Disability Access Fund (DAF)/Early Years SEND Inclusion Funding (SENIF) to support children with disabilities or special education needs, by aiding access to Early Years places by for example supporting providers in making reasonable adjustments to their provision through equipment or training. (If you receive Disability Living Allowance (DLA) then you would also qualify for this extra funding).
The Family fund
UK’s largest charity providing grants for families raising disabled or seriously ill children and young people.
Local Barnet organisations:
Barnet Local Offer - www.barnetlocaloffer.org.uk This is the Local Authority’s website where all local resources for supporting children and young people are listed. It is well worth being familiar with its pages and to revisit from time to time, as the website develops. Relevant pages on inclusion, promoting independence, support in school and different levels of expertise.
Barnet MENCAP offer a very supportive drop-in facility for families of children with likely developmental problems. www.barnetmencap.org.uk
Barnet Carers https://barnetcarers.org/ 0208 3439698
Barnet Carers Centre was established in 1996 and is a network partner of Carers Trust. We are an independent charity based in North Finchley. The Centre offers advice, information, emotional and practical support for all informal carers who live or work in the London Borough of Barnet. We provide carers’ assessments, activities, counseling, training, help with form filling, outings and a lot more.
Barnet Parent Carer Forum
We are a voluntary group of enthusiastic, committed parents and family carers in the London Borough of Barnet working with the local authority to ensure that the voices of our children and young people and their families are heard. If you want to be involved in shaping services for our young people then please join us – the wider our representation the stronger our voice! c/o Barnet Parent Carer Forum, Barnet Mencap, 35 Hendon Lane, Finchley, N3 1RT . Telephone 07468 029 705. Email info@barnetpcf.org.uk
Barnet Parent Carer Forum is part of the National Network of Parent Carer Forums (NNPCF) whose membership is made up of all Parent Carer Forums in England. NNPCF representatives, who are all parent carers, work with a broad range of organisations including Department of Education, Department of Health, Council for Disabled Children, British Academy of Childhood Disability and IPSEA. To find out more go to www.nnpcf.org.uk
Barnet Leading Edge Group (LEG):
Supports children and young people (CYP) with DS in primary and secondary schools by outlining best practice for schools (levels of expertise); this focuses on training, planning, curriculum, social, emotional and behaviour needs as well as personal support needs, transition and activities. The group organizes an annual DS conference open for all families and professionals in Barnet.
The BIG-DS hub (Barnet Integrated Group for Down Syndrome): This refers to the hub at Underhill Children’s centre for all Barnet preschool children with DS – integrating health, therapy and educational needs all in one place. Further information: “Barnet’s Novel Approach to Integrated Care for Children with Down Syndrome”, by Soor A., Rachamim E., Petsas A., Redman S. (2019).
Children’s Centres:
Most of the local Children’s Centres offer a range of very good and supportive behavioural support courses for parents to attend. These really do make a difference
Support groups in UK (DS-Specific)
Positive about Down Syndrome https://positiveaboutdownsyndrome.co.uk/
#NobodyToldMe A collection of personal experiences written by young people with Down syndrome, their friends and family. #NobodyToldMe challenges outdated perceptions and attitudes towards those with Down Syndrome by showing the reality of our lives.
https://positiveaboutdownsyndrome.co.uk/nobodytoldme/
The Ups of Downs Tel: 07814929306 Email: info@upsofdowns.co.uk
Established in 2006, and based in Leamington Spa, The Ups of Downs has been celebrating Down Syndrome in Warwickshire and surrounding counties for the last 13 years and works with more than 60 families. Our children are aged from birth to 15 years and meet regularly with children of their own age to work on essential skills in a fun and engaging way.
thischildcan – The Ups of Downs
The exhibition showcases children and young people with Down Syndrome and the many talents they have, aiming to demystify the condition and challenge outdated images.
Future of Downs
Support, chat and information for parents of children with Down Syndrome. Also an active facebook group.
Downright Excellent
Enabling children in London with Down Syndrome to maximise their potential as individuals and equally participating members of society through, especially but not exclusively: educational programmes, quality play, education and support for parents and education and support for siblings.
Provides weekly speech and language and occupational therapy sessions at the Sundial Centre in Hoxton for children aged 0-15 years old. (Friday mornings 0-4yr olds and Saturday mornings for ages 5-15) Based in London E7 7RU
Up on Downs
Up on Downs is a parent run organisation which supports families with Down Syndrome in Hertfordshire.
Down Syndrome Scotland
Down’s South London
A South London parent-run charity offering unique, specialist early intervention therapy for babies and young children with Down Syndrome and local support network for families. Free early intervention multidisciplinary (MDT) therapy provision for children with DS from birth to 6 years and their families in their South London catchment area.
DS Achieve
We empower families to enable their children with Down Syndrome to fulfill their potential. A Hertfordshire based organisation providing Hertfordshire-based families: Our little Achievers group for children 5 and under, Our Young Achievers programme for primary school-age children and training events and special events.
Wouldn’t change a thing
The mums in this video and the dad who created it (https://twitter.com/5ushi) met online and got together to show the world just how ordinary and fun life with the condition is and how they "Wouldn't Change a Thing".
50 Mums | 50 Kids | 1 Extra Chromosome
The Down Syndrome Research Foundation UK (DSRF-UK)
A national charity formed by parents of children with Down Syndrome who want greater emphasis placed on best scientific research, innovation and best evidence-based interventions, in addition to supporting the human rights of people with Down Syndrome and their families, through advocacy.
Support groups/organisations around the UK (not DS-specific)
Scope www.scope.org.uk
Supporting disabled people and their families through practical information and support, particularly at the time of diagnosis and in a child’s early years. 6 Market Road, London N7 9PW 020 7619 7100
Sense www.sense.org.uk
Supporting and campaigning for deafblind people
0300 330 9257
The Counselling Directory www.counselling-directory.org.uk
Care for the Family
Positive Parenting Courses – “there is something very special about meeting other parents/carers on one of these courses, with the ability and benefits of sharing ideas and experiences with others.” Usually six 2-hour sessions, led by experienced and trained facilitators. The Early Years, The Primary Years, The Teenage Years, Dads, Special Needs, Handling Anger in the Family, Quidz In – helping kids manage money, How to Drug Proof Your Kids. Parentalk is a DVD led parenting course, Digital Parenting online resources as well as the Positive Parenting courses.
SNAP Charity (Special Needs and Parents):
SNAP Helpline: 01277 211300 https://www.snapcharity.org/
An Essex charity for families with children and young people who have any special need or disability. SNAP’s aims are to inform, encourage and support parents and carers so that they can grow in strength and knowledge and become better equipped to give the best possible help to their children. Also a large useful directory for parents on their website.
Cerebra
A national charity helping children with brain conditions and their families discover a better life together. Eg advice on education and transport, financial support, Sleep, toilet training and continence, getting help, getting out etc.
The Family fund
UK’s largest charity providing grants for families raising disabled or seriously ill children and young people.
The Newlife Charity -
A national charity providing equipment for disabled and terminally ill children.
Caldwell Charity
To change the futures of all disabled children providing access to the services, equipment, therapies and treatments they need.
https://www.caudwellchildren.com/
Homestart
Local community network of trained volunteers and expert support helping families with young children through their challenging times, working with families across the UK. At the heart of each Home-Start’s work is home visiting volunteer support. www.home-start.org.uk
In Barnet – www.homestartbarnet.org Tel: 020 8372 0674 Email: admin@homestartbarnet.org
ADDISS – The National Attention Deficit Disorder Information and Support Service
Provides people-friendly information and resources about ADHD and related learning and behavioural difficulties, to anyone who needs assistance. Bookstore available too with a wide range of resources, based in Edgware in Barnet. Also runs parenting support groups, courses for parents and training for professionals.
Tel: 020 8952 2800 or email: info@addiss.co.uk www.addiss.co.uk
SENDIASS
Very useful for guidance around all issues EHCP/High needs funding/DLA etc and host many useful conferences.
Support for parents and carers | Barnet Council
Makaton Charity
Training courses for carers and professionals, resources to download for home and school.
www.makaton.org Email: info@makaton.org Tel: 01276606760
www.wetalkmakaton.org Sign of the Week.
Contact A Family
Supporting the families of disabled children whatever their condition or disability
209-211 City Road, London, EC1V 1JN 020 7608 8700.