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Additional Support & Useful Information

ADD-vance is not the only source of support for local parents of children with additional needs. Below we have listed many of the other fabulous organisations and resources that are available to local parents and professionals. If you know of any additional services that you believe would benefit other parents then please let us know by emailing herts@add-vance.org and we will add it to the list!

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ADDITUDE

This free online magazine from the US is a fabulous resource for parents and professionals including links to all the latest research and best practice.  You can sign up for free webinars with world-renowned experts and download previous recordings on many different topics.

ADDISS (Attention Deficit Disorder Information and Support Service)  

Based in Hendon, ADDISS provides information and resources about ADHD to anyone who needs support – parents, young people, teachers or health professionals.  Their ‘Bookstore’ has a wide range of resources relating to all aspects of ADHD and associated conditions including training packs and gifts.

ADDmore

The resource site for children/young people with ADHD/ADD in East and North Hertfordshire.  It includes useful tips, links and resources on a huge variety of topics including medication and sleep.

The ADHD Foundation

The ADHD Foundation is a national charity offering a unique lifespan, strength-based service for the 1 in 5 people who live with ADHD, Autism Dyslexia, Dyspraxia, Dyscalculia and Tourette’s Syndrome.  They work in partnership with agencies across all public services and business sectors to create a paradigm shift in health, education and employment.  They aim to influence policy and provision for the benefit of all.

AET (Autism Education Trust)

The AET provides training to schools about ASD and their website contains a wealth of downloadable resources for parents including a handy checklist to help you choose a school for your child and a plan to help you work more effectively with the school to meet your child’s needs.

Angels Support Group      

Angels is a parent-led registered charity set up in North Hertfordshire to support parents and carers of neurodiverse children.  All of the volunteers have children with ADHD or Autism and are committed to providing individualised, professional expertise and advice to help empower parents to hear their child’s voice.

ARFID Awareness UK

Avoidant/Restrictive Food Intake Disorder, previously known as Selective Eating Disorder, is characterised by a pattern of eating that avoids certain foods or food groups entirely and/or restricts the quantity eaten.  It is often associated with Autism due to sensory issues.  This charity provides information and support.

British Dyslexia Association

The BDA is a membership organisation which aims to support people with dyslexia.  Their downloadable ‘Empowered Parent’ pack is particularly useful if you are working with school to secure a diagnosis and support.

CAMHS (Child and Adolescent Mental Health Services).  

CAMHS is the NHS service responsible for supporting the emotional and mental health of children and young people.  In West Herts CAMHS is also called Step 2.  For more information about how CAMHS services work, please see this useful guide from www.healthyyoungmindsinherts.org.uk/parents-and-carers/when-seek-professional-help/what-camhs 

Carers in Hertfordshire 

Carers in Herts is the leading countywide registered charity for unpaid carers looking after a friend, neighbour or relative due to illness, frailty, mental health needs, disability or substance misuse.  They aim to help carers take better care of themselves by providing breaks, leisure and learning opportunities.  They also provide information and support for unpaid carers from children as young as 8 years upwards, including benefits and employment advice, support workers, advocacy and training.   In addition, they campaign to help improve services.  Their website is a good source of information including downloadable factsheets and a calendar of free events and workshops.  The quarterly magazine ‘Carewaves’ is a useful update and their Carers’ Passport provides significant discounts in shops and leisure facilities across the county.  They are always looking for more volunteers too.

CAT (Communication and Autism Team)

The CAT team is part of Hertfordshire County Council.  They are a team of specialist teachers who support children and young people who have difficulties with communication and interacting with others.  Anyone can call their advice line on Tuesdays and Wednesdays 1.30-4pm during term time on 01442 453920.  They can also provide advice and training to schools.

CBF (Challenging Behaviour Foundation)

The CBF is a national charity founded in 1997 to help parents dealing with children with severe learning disabilities and challenging behaviour.  The approach is based on Positive Behaviour Support (PBS) which looks at the reasons why behaviour happens.  There is a helpful video explaining PBS on their website.

CEA (Cinema Exhibitors’ Association)

The CEA Card is a national card scheme developed for UK cinemas by the UK Cinema Association (UKCA), formerly the Cinema Exhibitors’ Association (CEA). The scheme was introduced in 2004 and is one of the ways for participating cinemas to ensure they make reasonable adjustments for disabled guests aged 8 and over when they go to the cinema. In particular it ensures a complimentary ticket for a carer to go with them. The card costs £6 annually and requires proof of eligibility (e.g. receipt of DLA).

Cerebra

Cerebra is a charity that believes all children should have the same opportunities for independence and an ordinary life.  They produce excellent downloadable parent guides on a range of topics including autism, anxiety, completing DLA forms and Carer’s Assessments etc.

Council for Disabled Children

This national charity provides excellent resources including their free online ‘Expert Parent Programme’ to help you navigate the world of SEND and the parent guide to the SEN Code of Practice.

Disabled Persons Railcard 

This scheme from National Rail enables people with PIP or DLA (mobility component OR higher/middle rate care component) to buy a Railcard (1 year costs £20, 3 years costs £54) and save 1/3 on most tickets including advance tickets for you and one other person.

DLA (Disability Living Allowance)

DLA is a non-means-tested allowance designed to help with the extra costs of caring for a child with a disability who is under 16 and needs more looking after than a child of the same age who doesn’t have a disability. Your child does not need a formal diagnosis but you will need to provide information about how and why they need more care than the average child their age. The form is long and complicated so it is worth seeking help to complete it from the Money Advice Unit at Herts County Council on 01438 843456. It frequently goes straight through to voicemail but if you leave a message they will get back to you. If your child qualifies for DLA at the middle or higher rate for the ‘care’ component, and you earn less than £110 per week pro rata (after taxes, care costs while you’re at work and 50% of what you pay into your pension), then you will also be entitled to Carer’s Allowance. Carer’s Allowance is taxable and may affect other benefits. You can use the Tax Credit calculator to check: https://www.gov.uk/tax-credits-calculator. Alternatively, the Money Advice Unit will check everything with you and help you apply for Carer’s Allowance if applicable.

DSPL (Delivering Special Provision Locally)

One way in which Hertfordshire provides support to children and young people with SEND across the county is through the Delivering Special Provision Locally groups (DSPLs). There are 9 DSPL areas – one for each district. Each area decides exactly what their community needs, giving a more focused approach to providing the right support for the right locality. They provide support to schools and parents/families.

Each DSPL group is made up of:

  • Parents and carers
  • Staff from early years settings, schools and colleges
  • People from other SEND organisations

To find out more about the DSPL services in your area, take a look at their individual websites and Facebook pages using the link above.

Educational Psychology Service

The Educational Psychology service is part of Herts County Council.  They work directly with schools and other educational settings to provide support and training on how to manage concerns including learning, behaviour, emotional wellbeing and resilience.  All schools have an Educational Psychologist (EP) they can contact.  Schools need to request the service, but parents can call the Contactline on Wednesdays 2-4pm during term time on 01992 588574 to speak to an EP for advice.

Eric

Eric is the national Children’s Bowel and Bladder Charity.  Their vision is that every child and teenager with a bowel or bladder condition can access support and live free from embarrassment, shame, isolation and fear.  They offer a helpline, downloadable guides, training workshops and an online shop to support families and professionals, including those looking after children with SEND.

Families First Assessment

The Families First Assessment (FFA) has replaced CAF or TAF meetings.  This process is used to identify the needs of a child/family and to organise the right support and services to address those needs at an early stage.  It allows different professionals involved with a family to share information and work together in a coordinated way.  FFAs are voluntary and require consent from parents before they can begin. 

Families in Focus

This Hertfordshire-based Community Interest Company provides information, training and support to parents including groups, workshops and courses.  They also have specific projects running for siblings and for dads.

Family Fund 

Family Fund is the largest provider of grants to low-income families raising disabled and seriously ill children and young people. They aim to help ease the additional pressures families face by providing financial support for essential items such as washing machines, fridges and clothing but can also consider grants for sensory toys, computers and family breaks together.

Family Lives

This national charity is based in Hatfield and offers a variety of parenting services including their excellent Bullying UK website.

HAFLS (Herts Adult & Family Learning Service)

HAFLS is part of Herts County Council.  They run a wide range of courses for adults aged 19+, as well as other projects and programmes such as Study Plus, which helps young people aged 16-24 take their next step into further education, apprenticeships or a career.

HAND (Hertfordshire Additional Needs Database)

Hertfordshire Additional Needs Database is a voluntary register of disabled children and young people aged 0-25 years. By joining the register you can get discounts at leisure facilities and other places around the county (and beyond). You will receive also receive regular email updates on benefits/activities/support groups etc.

Healthy Young Minds in Herts

This comprehensive website was put together by NHS services in Herts to keep young people, parents and professionals updated on the latest information and resources with regard to mental health and wellbeing. It includes details of where to get help including the Young Minds website and Kooth free online counselling.

Hertfordshire All Age Autism Co-Production Board

The HAAAPB aims to raise awareness of autism and neurodiversity in general as well as influence services in Hertfordshire. Members represent a wide range of groups and organisations including people on the autistic spectrum and their families.

Hertfordshire Free Bus Pass Scheme

Check to see if you are eligible for the Free Bus Pass Scheme/Companion Scheme for Carers which allows free bus travel throughout Hertfordshire at any time.  It also allows free off-peak travel on bus services elsewhere in England (from 9:30am to 11pm on weekdays and all day over the weekend and bank holidays).  Also apply for a Disabled Travel Wallet and inserts here: www.hertfordshire.gov.uk/services/adult-social-services/transport-for-older-people-and-disabled-people/travel-wallet.aspx

Hertfordshire KIDS Hubs

KIDS East HUB – Divot Place, Hamels Drive, Hertford SG13 7SP Tel: 01992 504013

KIDS West HUB – Albanwood, Newhouse Crescent, Watford WD25 7BZ Tel: 01923 676549

The KIDS East and West HUBs are a one-stop shop for information and support for parents and carers of disabled children and young people aged 0-19 in Hertfordshire. They offer free and impartial support via phone, email and face to face (including home visits) and you don’t need a referral. Sign up for their fortnightly email newsletter and join their Facebook page. They have a brilliant interactive directory which includes the most up-to-date details of support groups, organisations and service providers, as well as a toy library which includes books and sensory resources. If your child has a statement which needs to be converted to an EHC Plan, or you are thinking of applying for an EHC Plan then the KIDS Independent Supporters can provide free impartial support and information throughout the process.

Hertfordshire Local Offer

By law, every local authority has to publish information about what services are available in their local area for parents, children and young people aged 0-25 with special educational needs and disabilities (SEND). This includes information about education, childcare, leisure activities etc. It is the best ‘one-stop shop’ for SEND information and should always be the first place you look when you need information or resources.

Hertfordshire Wellbeing Service

The Wellbeing Service is part of Herts Partnership University NHS Foundation Trust. It offers free and confidential therapies and support to adults in Hertfordshire who are experiencing common mental health problems including stress, low mood and insomnia. Various treatment options are available including computerised CBT, skills workshops, couples therapy and individual therapy. They also provide support for carers and it is worth looking at the resources on their Carers page. You can refer yourself to the Wellbeing Service using their online form or calling 0800 6444 101.

HPCI (Herts Parent Carer Involvement)   

HPCI is part of a national network of parent carer forums. They are always looking for new members to join their network. Their aim is to improve services for families by working alongside those who provide services for children and young people with special educational needs and disabilities (SEND). To find out more about how you can get involved, contact them directly or join their Facebook page.

HYH (Herts Young Homeless)

HYH is a unique charity in Herts providing services to support vulnerable people in order to prevent homelessness. This includes education in schools, family mediation, supporting 16-24 year olds in their first homes or caring for adults of all ages who have mental health issues and housing needs.

IPSEA

This is a national charity which offers free and independent legally based information, advice and support to parents and carers to help them get the right education for children with SEND. They provide a variety of services including a helpline, training, free downloadable legal guides and resources including template letters.

Irlen Institute

This organisation provides information and support to those who experience reading and learning difficulties due to the brain’s inability to process visual information – known as Irlen Syndrome. The website includes Irlen self-tests and details of how to find a local diagnostician.

Library Services

Most libraries have books and other information covering a wide range of disabilities so you don’t necessarily need to buy books to understand more about your child’s condition. If there is a particular book you are keen to get hold of you can also request that the library service buys it. Disabled people and their carers do not have to pay overdue or reservation charges and they are also entitled to borrow up to 30 items at a time and keep them for up to 6 weeks. Call 0300 123 4049 to let them know that your child is disabled and that you are a carer – this information will be linked to your card. If you have trouble getting to a library then find out more about the Home Library Service where items are brought to you.

Local Offer 

By law, every local authority has to publish information about what services are available in their local area for parents, children and young people aged 0-25 with special educational needs and disabilities (SEND). This includes information about education, childcare, leisure activities etc.

Merlin’s Magic Wand 

Merlin Entertainments (who own Legoland, SeaLife, Madame Tussauds and other attractions) run a charity which provides free, non-means tested tickets to families with children aged 2-18 with a confirmed serious illness/long term illness, disability or disadvantage and who would benefit from a day out at a Merlin attraction. Apply online using the link above.

Money Advice Unit

The Money Advice Unit is part of Herts County Council. They provide useful guides on benefits and budgeting, including how to apply for DLA, PIP, a Carers Allowance etc. For help completing forms call 01438 843456.

Movement Matters

This is the UK umbrella organisation representing the major national groups concerned with coordination difficulties, which can be caused by a condition called Developmental Coordination Disorder (DCD) that is sometimes referred to as ‘dyspraxia’. The website includes useful factsheets and videos for parents as well as the latest diagnostic criteria.

NAS (National Autistic Society) 

The NAS is the leading UK charity for people with autism (including Asperger syndrome) and their families. They provide support, guidance and advice, as well as campaigning for improved rights, services and opportunities to help create a society that works for autistic people. The website is a hugely valuable resource (use the ‘search’ facility to help you navigate directly to what you need). They also have free downloadable leaflets and other publications which can be ordered for just the cost of postage and packing. It is worth paying the membership fee in order to receive the monthly magazines which provide helpful information and strategies on different topics.

NAS in Herts

Our local branch of the National Autistic Society establishes specialist support groups and networks not covered by other local organisations. Members receive regular email updates.

Netdoctor  

This UK website provides comprehensive, medically-based information on diagnosis and interventions for ADHD, including the full diagnostic criteria.

New Leaf Recovery and Wellbeing College

New Leaf has been running since 2016. They deliver free short courses available to any Herts resident aged 18+. These courses are designed to help people overcome a range of wellbeing challenges and build on strengths.

Not Fine in School

This website offers support for those who are struggling to attend school. The general resources page is particularly helpful.

Occupational Therapy 

The Hertfordshire NHS Children’s Occupational Therapy service offers two free online workshops to help parents understand more about sensory differences and sensory regulation. They also offer a free workshop to help parents support the development of their child’s motor skills. Use the link above to book onto these sessions.

Ollie Foundation

A local charity started by three parents who lost their sons to suicide. They provide training and support to people who live or work with young people who may be vulnerable to suicidal ideation. Their help and advice page contains excellent resources.

PALMS (Positive Behaviour, Autism, Learning Disabilities and Mental Health Service)

This NHS Service is unique to Hertfordshire. PALMS provides a specialist multi-disciplinary approach to children and young people aged 0-18 years who have a global learning disability and/or Autistic Spectrum Disorder and their families. They provide individually tailored support to help manage a number of concerns experienced at home focusing on both prevention and intervention. Only a professional can refer into the service.

PDA Society (Pathological Demand Avoidance)

This national registered charity provides information, support and training for those living and working with PDA. PDA is widely understood to be a profile on the autism spectrum including a distinct cluster of additional traits including an extreme need for control which is often driven by anxiety.

PIP (Personal Independence Payment)

PIP is a non-means-tested allowance available to people aged 16-64 years who have long-term ill-health or a disability to help with the extra costs associated. If you have previously received DLA for your child, you will need to reapply for PIP once they reach 16 years. As with DLA, it is preferable to call 0800 917 2222 and ask for a paper form to be sent, so that any subsequent award will be backdated to this date. If your young person is not able to manage their own money, then you can register as their appointee.  The Money Advice Unit can help you complete the forms if you call them on 01438 843456.

Potential Kids

Potential Kids is an award-winning charity based in Welwyn/Hatfield providing learning, social and sports opportunities to neurodiverse children and young people, their siblings and families. It’s a great place for children to make friends and have fun while parents/carers relax and meet others in a similar situation.

Radar National Key Scheme

The Radar National Key Scheme (NKS) offers disabled people independent access to locked public toilets around the country. Toilets fitted with National Key Scheme (NKS) locks can now be found in shopping centres, pubs, cafés, department stores, bus and train stations and many other locations. A key costs £4.75 and you can find out if there is a Radar Key toilet nearby using the Great British Public Toilet Map at www.toiletmap.org.uk/. Beware of buying cheap imitation keys from other websites!

SEND VCB (Very Challenging Behaviour)

This project is run by inspirational writer, speaker, trainer and mother, Yvonne Newbold. She is passionate about doing whatever it takes to improve the lives of people with complex neurodevelopmental conditions and profound learning disabilities. Her website is full of useful resources on how to deal with behaviour which is extremely challenging. She also hosts regular webinars on specific topics.

SENDIASS (Special Educational Needs and Disability Information Advice and Support Service)

SENDIASS offers confidential and impartial information, advice and support to parents, children and young people on any issues relating to the child’s education, health or social care needs. The service aims to support families from birth to 25 years and includes signposting families to other services and agencies if appropriate. Their expertise and training in disagreement resolution makes them a useful ‘third party’ to take to meetings with school. The service is funded by Hertfordshire County Council. They can also help with EHCP applications. The ‘Information Zone’ on their website is particularly helpful.

Sensory Processing Disorder Resource Center

This US website explains Sensory Processing Disorder in more detail, providing information and resources to help parents understand and support their child’s sensory differences.

Short Breaks Local Offer (SBLO)

This scheme offers disabled children and young people the chance to spend time socialising and having fun in a safe and well supported environment while their families get a break. Click on the link above to see what is currently available in your area (some activities are ‘virtual’ too!) and register your interest.

SOS!SEN

This national charity offers free, friendly, independent information and advice for parents on SEND. This includes a helpline, 1:1 consultations, online training sessions and printable information sheets.

SPACE   

SPACE is a Hertfordshire based charity supporting parent/carers of children and young people on the autism spectrum, with ADHD or a related condition. They organise regular support groups, speaker meetings, workshops and conferences; see their Facebook page for full details. They also organise social activities for neurodiverse families and are an SBLO provider (see above).

Special Schools in Herts

Browse the full list of special schools and schools with special bases or units that educate children with SEND who have an Education, Health & Care Plan (EHCP).

Spectrum Girls                 Email: spectrumgirls@add-vance.org

Spectrum Girls is a social group for girls and women living in Hertfordshire with ASD/ADHD. Most members are parents of school-aged girls looking to share information and support each other. It’s a great place to find local friends with similar interests! Spectrum Girls is now part of ADD-vance and operates via a private Facebook group.

Speech and Language Therapy

The Hertfordshire NHS Children’s Speech and Language Therapy service offers a variety of resources and training to parents and professionals including the popular ‘More Than Words’ course for parents of young children with autism.

SpLD Team (Specific Learning Difficulties Team)

This team of specialist teachers is part of Hertfordshire County Council. They are qualified in assessing and working with pupils who have specific learning difficulties e.g. dyslexia, dyscalculia, dyspraxia. Schools need to request the service, but anyone can call the advice line on Monday and Thursday 9.30am-12pm during term time on 01442 453920.

Stamma

Previously known as the British Stammering Association, this national charity provides information, resources and support to anyone who stammers in the UK, as well as their family, friends, educators and colleagues.

Supporting Links

This social enterprise provides parenting support via courses, workshops and 1:1 mentoring of parents and children throughout Herts and the surrounding area.

TechSafe

This charity aims to give parents and professionals the confidence to keep children safe online. They provide a variety of workshops and tools specifically for children with SEND including their ‘TechSafe – SEND’ app, which is available for free on Apple and Android devices.

The Children’s Sleep Charity

This award-winning national charity supports families dealing with sleep issues using workshops, clinics and downloadable factsheets. They offer specialist workshops for parents of children with ADHD and Autism.

Tourettes Action

This national charity aims to make life better for people with Tourette Syndrome. They offer support in a variety of ways including online support groups, a helpdesk, a befriender scheme, training, and resources (e.g. school passports).

Tracks Autism

This independent specialist Early Years Centre in Stevenage caters for children with autism and related conditions from the age of 2 years.

YCH

Previously known as Youth Connexions Hertfordshire, YCH is part of Herts County Council and provides information, guidance, work-related learning and wider support for young people, including those with SEND.

Young Minds

This national charity offers information and support to children and young people on their mental health including advice on self-care, bullying, medication etc. There are also resources for parents and schools.