National Support
Below is a list of benefits, discounts, grants and organisations which provide support and advice which is available nationally. Click on one of the categories below to display only results from those categories. Click on the appropriate name to display more information about it. If you're just starting out on your SEND journey I'd recommend you first read "Getting Started". The first few listings down to SENDIAS are the things we would recommend looking at to start with, after that everything else is listed in alphabetical order.
Accessibility Advice / Information / Support Benefits Carers Days Out / Send Activities Education Legal Advice Mobility / Transport Other Respite Care School Holiday / After School Clubs Wish Granting Charities
Disability Living Allowance (DLA)
Benefit for children with higher than average care needs
DLA (Disability Living Allowance) is a benefit available to children under the age of 16. It pays from £24.45 to £156.90 a week and is dependent on the level of help the child needs. It is not means tested, which means you can claim regardless of what your income is. You don't need diagnoses to claim DLA, it's based on your child's needs (but obviously the more evidence you have the more it will help your claim).
DLA is divided into two components, one based on the level of care the child needs (Care Component) and the other on the mobility needs of the child (Mobility Component). The mobility component is only available to children aged 3 and over (ages 3 to 4 can only be awarded high rate mobility). For those aged under 3 with the highest needs, you can apply for a discretionary grant from the Family Fund Motability Scheme to lease a vehicle through the Motability scheme.
https://www.familyfund.org.uk/mobilitysupport
DLA applications can be a long process and people often find that they are rejected or awarded a lower level than they feel they deserve following their initial application. Please see my DLA page for more information, particularly if you're considering trying to get High Rate Mobility under Virtually Unable to Walk (VUW) or Severe Mental Impairment (SMI) criteria.
DLA Website:
https://www.gov.uk/disability-living-allowance-children
Eligibility criteria can be found here:
https://www.gov.uk/disability-living-allowance-children/eligibility
Claims Form and Guidance notes:
https://www.gov.uk/government/publications/disability-living-allowance-for-children-claim-form
In Scotland you get a Child Disability Payment instead of DLA, but it's much the same thing:
https://www.mygov.scot/child-disability-payment
For more information see:
Carers Allowance
Benefit available for people who care for someone for at least 35 hours a week
Carers allowance is a benefit available to you if you care for someone for at least 35 hours a week (you do not get paid extra if you care for more than one person. If someone else also cares for the same person as you, only one of you can claim Carer’s Allowance). The current rate for Carers Allowance is £69.70 a week. To be eligible for carers allowance you must care for your child for at least 35 hours a week and the child must be in receipt of the middle or highest rate care component of Disability Living Allowance.
You can only claim if your income after Tax, National Insurance and Expenses is £132 a week or less.
For more details see: https://www.gov.uk/carers-allowance
Education, Health & Care Plan (EHCP)
Accessing extra educational support
“An Education, Health and Care plan (“EHC plan”) is a legal document which describes a child or young person’s special educational needs, the support they need, and the outcomes they would like to achieve.” Once in place an EHCP can allow your child to access specialist support, schools and therapy and will put in place the funding for this.
https://www.gov.uk/children-with-special-educational-needs/extra-SEN-help
To set up an EHCP you need to apply for an Education, Health and Care Needs Assessment from your Local Authority. You can make this application yourself or it can be done by your child's school, nursery, doctor, health visitor etc
The process is a lengthy one and you need to convince the local authority in the first place that they actually need to assess your child, so it's important to include as much evidence as possible in your application. There are some really good guides on the internet which I would recommend studying before applying.
https://www.ipsea.org.uk/pages/category/education-health-and-care-plans
https://westsussexsendias.org/education-health-care-plans/
IPSEA have a template letter to use when requesting a needs assessment:
https://www.ipsea.org.uk/model-letters
For more detailed information see: EHCP
Children With Disability Services
Support for you and your child from social servies
You can apply for a needs assessment from your local Children with Disabilities Service (part of the social care department) to see what help they may be able to offer both your child and you as a carer.
To find out how to apply in your local area, enter your details here: https://www.gov.uk/apply-needs-assessment-social-services
After applying they'll normally get back to you within 48hrs, telephoning to discuss why you think you need an assessment and telling you the next steps. If it's determined that you meet the eligibility criteria to have a full assessment, a social worker will arrange to visit you within 10 working days to complete the assessment (it is a requirement that they see your child as part of the assessment). The social worker will meet with you to discuss your situation, what help you would like and what they might be able to provide you. They will discuss things like your child's care needs, the affect this has on your life and the support network you have. They will complete the assessment within 45 days. Their report will be shared with you and any needs Identified will be developed with you into a child and family support plan.
To many the idea of volunteering to be assessed by a social worker might seem strange, but they can be an excellent way of accessing support services and finding out about assistance that you didn't even know was available. (Support available can include support from an allocated social worker or a child & family worker (CFW), direct payments that enable parents and carers to employ a personal assistant (PA) to support their disabled child and allow some breaks from caring, home care support or support to access the community through a specialist care agency, overnight short breaks, specialist assessments and behavioural support through organisations such as Aspens, access to targeted short breaks provisions, including after school clubs, Saturday clubs and holiday play schemes). Also your report from this assessment can be helpful when applying for other support, such as in a DLA application.
Family Fund
Support for low income families raising disabled or seriously ill children
Is a charity that aims to improve the lives of low-income families raising disabled or seriously ill children and young people. They offer grants for short breaks, essential items and services (eg washing machines, toys, furniture, tablets / computers, bedding, clothing etc) and their website also has a series of guides on various types of support that is available.
To be able to apply for a grant you must meet certain criteria, which are basically that your child must have a high level of additional support needs arising from a long term disabling condition or a serious or life limiting illness and you must be in receipt of a means tested benefit (eg Universal Credit).
Sunflower Lanyard Scheme
Bringing awareness to hidden disabilities
The Sunflower Scheme aims to bring awareness and visibility to non-visible disabilities. By wearing a Sunflower Lanyard you can easily make others aware that you are someone you care for has a hidden disability. We have found that this can make you feel much more comfortable when out and about and that you don't feel the constant need to be explaining yourself to others. Some settings will have staff who are specially trained to offer extra assistance to those who need it.
You can also enter your postcode on their website to find local places with people who are trained to recognise and support those wearing a Sunflower Lanyard who have hidden disabilities:
Free Child Care For 2-4 Year Olds
Government scheme to provide free child care for some children
The government provides free childcare for some children aged 2-4 years depending on thier circumstances.
In general, if you (and your partner if you have one) are working, your 3 to 4 year old children are entitled to 30 hours free childcare per week with an approved childcare provider for 38 weeks a year. If you're not working but are in receipt of some benefits such as Incapacity Benefit or Carers Allowance, you may still be entitled to this free childcare. For more details see: https://www.gov.uk/30-hours-free-childcare
2 year olds may also be entitled to free childcare if you receive certain benefits including Income Support, Job Seekers Allowance, Universal Credit, Child Tax Credit or Working Tax Credit. In addition, 2 year olds are entitled to free childcare if they have an Education, Health and Care Plan (EHCP) or receive Disability Living Allowance (DLA).
For more details see: https://www.gov.uk/help-with-childcare-costs/free-childcare-2-year-olds
Free School Transport / Claim Mileage For Taking Your Child To School
If your child has an EHCP or Statement of Special Educational Needs and you live 2 or more miles away from their school if the child is under 8, or 3 or more miles away if your child is 8 or over, you should be entitled to be provided with free transportation for them to and from their school. For more information on eligibility see: https://www.ipsea.org.uk/pages/category/transport-to-school-or-college
https://www.ipsea.org.uk/News/home-to-school-transport-understanding-your-rights
Something that seems to be not so well known is that if you decline this offer and elect to take your child to and from school yourself, you are entitled to claim the return mileage from your house to the school twice a day (some authorities only seem to cover one return journey a day), for every day they have attended at a rate of 25p per mile.
Find details of how to apply through your local council here:
https://www.gov.uk/free-school-transport
https://www.gov.uk/apply-school-transport-for-child-with-special-educational-needs-sen
Motability Scheme
Car leasing scheme for those in receipt of Higher Rate DLA Mobility Element and grants
If you are awarded the High Rate Mobility Component of Disability Living Allowance, you have the option of using some or all of it to lease a car through the Motability scheme. The price of a lease is all inclusive (insurance, servicing, maintenance, breakdown cover, tyre replacement and windscreen repairs). If the car you require to meet your needs requires a deposit, they may be able to provide you with a grant to cover this cost depending on your circumstances.
For more details see: https://www.motability.co.uk/
They also offer some charitable grants for Cars and Adaptions, Wheelchair Accessibility, Complex Solutions, Driving Lessons, Additional Support, Access to Work, Stopped Allowances and Special Grants.
For details see: https://www.motability.org.uk/charitable-grants/
Portage
Home visiting educational service for pre-school children with SEND
Portage is a home-visiting educational service for pre-school children with SEND and their families. They offer advice, support and learning through structured play. They're very highly regarded, but as with lots of support services they can often have quite a long waiting list.
IPSEA (Independent Provider Of Special Education Advice)
Help children and young people with special educational needs and disabilities, and their families and carers, to get the appropriate education, training and support to which they are entitled under the law. As well as having an advice service, their website also offers a number of guides on things like choosing schools, EHCPs, SEN Law, transport to school etc
SENDIAS (SEND Information, Advice and Support)
Advice service focussed on helping SEND children access education and EHCPs
SENDIAS (SEND Information, Advice and Support) Service provides confidential and impartial information, advice and support to children and young people who have special educational needs and/or disabilities and to their parent carers.
They are mainly focussed on accessing education and EHCPs. Each area has it's own individual SENDIAS service, you can search for your local one at the following link:
Able Kidz
Grants for specialist equipment and communication equipment
"Able Kidz works to make a disabled child’s educational journey a fulfilling and positive experience. They do this by provision of specialist equipment, computers and software to the children or school and also assist in funding extra tuition needs of a child.
We aim to make a variety of learning aids accessible to children with disabilities all over the UK, both on an individual basis and for use in schools and playgroups etc."
Access Card
Proof of disability card to help access discounts
Described as a “Disability Passport”, Access Cards are widely recognised across the UK and can serve as proof of disability when requesting concessionary ticket prices. They cost £15 for a card that is valid for 3 years. You can apply for one through their website, you'll need to provide a description of your needs and also some documented proof of these.
ADHD Foundation
Information and support for numerous neurodiverse conditions
"The ADHD Foundation is the UK’s leading neurodiversity charity, offering a strength-based, lifespan service for the 1 in 5 of us who live with ADHD, Autism, Dyslexia, Dyspraxia, Dyscalculia and Tourette’s syndrome." Through their Neurodiversity Clinic based in Liverpool they offer ADHD Assessments for anyone aged 6 or over. Their Resource Hub has lots of information relating to Autism, ADHD, Tourettes, Dyslexia, Dyspraxia and Dyscalculia.
ADHD UK
Proof of disability card to help access discounts
"ADHD UK has been created by people with ADHD for people with ADHD." Their website has a wealth of information about ADHD.
AFK Charity
Specialist mobility equipment suppliers
Celebrating their 30th birthday in 2022, AFK supply specialist mobility equipment that isn't available on the NHS for children and young people up to their 25 birthday. Equipment they can supply includes wheelchairs, buggies, walkers, mobile hoists, power packs (to add power to a manual wheelchair), car seats and harnesses etc. They can also offer help and support with life and work skills.
Alex TLC
Leukodystrophy support charity, support grants
Alex TLC support services have a wealth of experience and knowledge to help you through all aspects of living with a leukodystrophy whether you are newly diagnosed or were diagnosed a while ago. They are here to support you, your family and friends, through practical and emotional support as well as accurate medically checked information relating to the many types of leukodystrophy.
They provide means tested grants to help access care, equipment or therapy not available through statutory services, including support during Bone Marrow Transplant or Gene Therapy.
Always Look On The Bright Side Of Life
Grant providing charitable trust
The charity’s ongoing focus is to relieve the needs of children (under 18 year olds) by reason of finance, illness, or other disadvantage, by the provision of grants to improve their conditions of life.
The Charity is particularly interested in applications for grants that will provide children with enjoyment, not just the basic essentials of daily life, though these may also be funded where deemed appropriate.
Ambitious About Autism
Autism special schools and information
Ambitious About Autism run a number of specialist schools for Autistic children and also help Autistic people gain work experience and employment. Their website has a large amount of information about Autism.
ARFID Awareness UK
ARFID (eating disorder) support and information
Avoidant / Restrictive Food Intake Disorder (ARFID) is an eating disorder characterised by anything from a limited diet (refusal to to eat certain groups or types of food) to a complete refusal to eat. ARFID Awareness UK are the UK’s only registered charity dedicated to raising awareness and furthering information about Avoidant/Restrictive Food Intake Disorder.
Aspire
Spinal injury support charity
Aspire is a charity that helps people living with spinal injury. It's website has information about spinal injury and details the different ways that the charity can support you.
AT Society
Ataxia-telangiectasia support charity, grants
The A-T Society supports supports people living with the disabling and life-limiting condition ataxia-telangiectasia and funds research to find a cure. Their website has a wide range of support and resources available on it.
The A-T Society can offer financial help to people with A-T through their Support Grants System. Here are some examples of the things we can help with, however there may be other items or areas where we can help. Please note that the equipment or service has to be for the benefit of the person who has A-T.
IT Equipment
Wheelchairs
Bathroom Equipment
Specialist Furniture
Hoists
Holidays
Respite Care
Trikes
Scooters
Motability Car (deposit)
Transport Costs
Courses
Therapy equipment
Stairlift
Ataxia
Ataxia support charity
Ataxia provides information and support for people living with Ataxia (an umbrella term for a group of neurological disorders that affect balance, coordination and speech).
There are also a number of grants available that are listed on their website
Barnardo's
Support charity for vulnerable children and their families / carers
Is a national charity that provides support and advice to vulnerable children, their families and carers. Their website has a search function to find support in your local area. They also offer short breaks (respite care) for children with disabilities.
Barretstown
Free holiday camps for children living with a serious illness and their families
Offers free, specially designed camps and programmes for children and their families living with a serious illness – supported behind the scenes by 24 hour on site medical and nursing care. Based in County Kildare, Ireland, transport to the camps is also free.
Batten Disease Family Association
Battens disease support charity
The BDFA provides advice and support for families of those suffering with Battens Disease. They also provide a family grant scheme.
BBC Children In Need Emergency Essentials Program
Provides essential items for families in need
The BBC Children in Need Emergency Essentials Programme supports children and young people who are facing exceptionally difficult circumstances, and is delivered by Family Fund Business Services. The programme provides items that meet a child’s most basic needs such as a bed to sleep in, a cooker to provide a hot meal and other items or services critical to a child’s wellbeing.
They can provide of fund critical items such as:
Cookers.
Furniture.
Kitchen equipment and small appliances.
Children’s beds and bedding (including cots).
Washing machines and tumble dryers.
Fridges, freezers and fridge-freezers.
Baby equipment.
Clothing.
Beacon House
Therapeutic service for those who have experienced trauma (based West Sussex)
Beacon House is a specialist, innovative and creative therapeutic service for young people, families and adults. With a special interest in working with individuals of all ages who have experienced trauma and loss, they are passionate about offering safe and effective therapies in a way that enables people to re-build their lives following stress and adversity.
Birkdale Trust
Provides grants for hearing impaired young people
Birkdale Trust For The Hearing Impaired makes grants to young people up to an age in their mid-twenties who are resident in the UK. This funding provides support in a variety of ways and to organisations linked to deaf young people.
Blue Badge Parking In Europe
Provides grants for hearing impaired young people
If you're thinking of using your Blue Badge in Europe, this site provides am explanation sheet to help local authorities recognise your badge, translated into many languages, to display next to your blue badge:
https://www.icarhireinsurance.com/disabled-driving-in-europe
Boparan Charitable Trust
Fund specialist equipment not available on the NHS and treatments such as speech and language / behavioural therapy
The Boparan Charitable Trust is a charity created with the sole aim of improving young peoples’ lives. They provide funding to children with disabilities, life-limiting illnesses and those who are in extreme poverty across the UK. Their grants can fund specialist equipment such as wheelchairs, trikes, sensory toys not available on the NHS, and treatments such as a Speech & Language Therapy and Behavioural Therapy.
British Wireless For The Blind Fund
Provides grants for the hearing impaired
Launched in 1928 they have been providing radios to visually impaired people for over 90 years. They are able to supply a loan of one their specialist radios for free to those who meet their criteria.
They also have a shop where their specialist radios are available to purchase. They've also developed their own specialist apps for smart devices.
Brittle Bone Society
Brittle bone support charity
The Brittle Bone Society is the sole organisation set up to address the needs of people born with Osteogenesis Imperfecta (OI). The charity supports people in the UK and Republic of Ireland.
Their website provides a wide range of resources and information.
They also provide grants to pay towards wheelchairs, specialised equipment, holidays and respite care.
Bruce Wake Charitable Trust
Sporting / leisure grants for wheelchair users
Provides grants for sporting or leisure activities for physically disabled wheelchair users.
Buttercup Children's Trust
Support charity for seriously ill children and their families
Buttercup Children’s Trust helps seriously ill children and their families to overcome the pressures of dealing with disabilities and life hindering illnesses.
They can provide assistance with such things as vital medical equipment, vital sensory equipment in addition to travel costs and respite to name a few.
They also provide support and advice.
Buttle UK - Chances For Children
Support grants
"What we do is very simple: pay for things that we would want all children and young people to have but their parent or carers cannot otherwise afford."
They provide support designed to improve emotional, educational and social outcomes through our Chances for Children grants and, for some children whose home environment is disruptive and chaotic, grants which allow them to go to boarding school.
They can offer grants upto £2000 and items they can fund include:
- Items and activities to support learning and development such as laptops, books, 12 months of broadband, educational toys, tuition, etc.
- Clothing and school uniforms
- Social, sporting and leisure activities
- Family activities
- Items for children/young people’s bedrooms
- Other household items that are not available from sources such as Emergency Essentials or Local Authority welfare schemes, etc.
Carefree
Free short breaks for full time carers
Carefree is a charity that provides free short breaks to full time carers (30+ hours a week, aged 18+) by using 1 or 2 night stays that are donated by their hospitality partners (they're working on making longer breaks available).
There is no charge for the accommodation, but you are responsible for all other costs (transport, food, travel insurance etc.) and there’s a £25 admin fee to help with the cost of operating the charity. You must be able to arrange for interim care for while you are away.
Carers First
Advice and support for carers
Carers First works directly with and for carers to provide personalised information and advice. Making it easier for those caring for someone else to continue living their lives to the fullest.
Carers Trust
Carers support charity
Carers Trust is a major charity for, with and about carers. They work to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems.
They have a national network of local support partners which you can search on their website to find appropriate support in your area.
If you are a carer you may be able to receive a Carers Fund grant as part of a package of support from your local Carers Trust Network Partner.
Carers UK
Carers support charity
Carers UK is an organisation that provides information, advice and support to unpaid carers. Most counties or regions have their own specific carers support organisations and Carers UK has a search function on their website to help you find what support may be available locally to you.
https://www.carersuk.org/help-and-advice/get-support/local-support
Caring Cancer Trust
Support for young people suffering / recovering from cancer
The Caring Cancer Trust provide special Youth2Go Healing Holidays of Adventure and Create2Go Art and Music workshops for Children recovering from Cancer, enabling them to regain their self-confidence and re-ignite their passion for life after the trauma of their illness and lengthy treatment.
They also provide in-patient support at hospital paediatric oncology units in southern England, providing comforts and amenities for children suffering from Cancer, and support for their caring parents and siblings.
Carter Trust
Grants for disabled people in financial need
Founded in 1993, The Andrew and Catherine Carter Trust is a UK based charity which provides grants for special equipment or adaptation of housing or transport to meet the needs of disabled people who are in financial need.
Cash For Kids
Grants for young people living with a disability or illness
Cash For Kids grant rounds support children from birth up to and including 18 years of age who are vulnerable, come from disadvantaged backgrounds or are living with an illness or disability. The value of a grant is typically from £1,000 to £3,000 but they will happily consider applications for larger amounts.
Different areas have different eligibility criteria and grants are dependant on the donations they receive, so the application forms may not always be active for every area.
Caudwell Children's Charity
Grants and support for disabled and autistic children
Is a national charity based in Staffordshire “at our state of the art facilities which are dedicated to improving the lives of disabled and autistic children”. They offer Autism Assessments, Occupational Therapy, Equipment, Sensory Packs and various other forms of support. For families with a household income of under £45,000 they can fund up to 80% of the costs for the assistance they provide.
https://www.caudwellchildren.com/
They also provide funding towards life-changing equipment for children with a wide range of disabilities or chronic conditions. They can provide upto 80% of the cost of therapy tricycles, sensory equipment, sports equipment, car sears, car harnesses, buggies and powered wheelchairs.
CEA Cinema Card
Free carers cinema tickets
Enables a disabled cinema guest to receive a complimentary ticket for someone to go with them when they visit a participating cinema.
Cerebra
Support charity for children with brain conditions
Cerebra is the national charity helping children with brain conditions and their families discover a better life together. They provide a Book and Toy Library, Sleep Advice Service, Legal Advice Service and they publish a series of guides and factsheets to help families of children with brain conditions with common problems they may be facing.
The Cerebra Innovation Centre (CIC) designs and builds innovative, bespoke products to help disabled children discover and engage with the world around them. If you have a problem you need addressing or an idea for something that you think could help your child, please get in touch.
Cerebral Palsy Cymru
Support charity those with Cerebral Palsy in Wales
Cerebral Palsy Cymru's website has information about Cerebral Palsy and the funded therapy services that they offer.
Cerebral Palsy Scotland
Support charity those with Cerebral Palsy in Scotland
Cerebral Palsy Scotland offer support and therapy groups for both children and adults with cerebral palsy. They are able to offer some funding towards therapy for some individuals.
Their website also has a wealth of information on it and some great disability directories.
Charlie & Carter Foundation
Financial support for children with life limiting conditions
The Charlie & Carter Foundation (CCF) provides financial support to parents of seriously ill children with life limiting conditions that require 24 hour nursing care or specialist nursing facilities. Their services will directly pay your mortgage, rent, gas, electricity, provide food vouchers, petrol card, basically help with your day to day living expenses. The foundation will cover a period of three months within their one payment budget
Cheyne Charity
Specialist equipment grants for young people with Cerebral Palsy
Cheyne Charity is dedicated to helping children and young people with Cerebral Palsy. They offer grants for specialist equipment.
Chicken Pox Vaccine
This won't be for everyone, but we were concerned that our son wouldn't cope well if he were to get Chicken Pox, so we decided to get him vaccinated. The vaccination isn't available on the NHS, but you can get it through Boots and other private healthcare providers. It isn't that cheap, Boots currently charge £140 for a full vaccination, but we decided it was worth paying, compared to if we and our son were to have to deal with him having Chicken Pox instead.
https://www.nhs.uk/conditions/vaccinations/chickenpox-vaccine/
https://www.boots.com/services/health-pharmacy-advice/vaccinations/chickenpox-vaccination-service
Child Brain Injury Trust
Charity offering support to children living with an acquired brain injury
The Child Brain Injury Trust is a charity that offers support (including legal) and advice to children living with an acquired brain injury, as well as supporting their carers and siblings.
They also operate a small grants program that awards up to £125 towards a social activity for siblings and children with a ABI.
Children Today
Specialist equipment for young people with disabilities
Founded in 1994, Children Today was created to help children and young people with disabilities up to the age of 25 across the UK by providing specialised equipment to help offer an improved quality of life.
Children's Heart Foundation
Support charity for children with heart defects
The Children’s Heart Federation helps children with heart defects and their families by:
Providing direct support
- Information and advice through our information sheets and information line 0300 561 0065
- Resources for children with heart conditions such as Molly’s Dollies a rag doll with surgical scars and Rosie goes red, Violet goes blue a story book to help small children and their siblings understand heart conditions
- Providing medical equipment for children with heart conditions such as INR machines
- The Heart2Heart newsletter containing information and news for the cardiac community
- Pulse Parents – a private Facebook forum where parents can discuss topics relating to children with heart conditions
- Coffee and questions – online events on a variety of subjects relevant to families with children with heart conditions, each event has a speaker and the opportunity to ask questions from the audience
Children's Trust
Support charity for children with acquired brain injury
Is a national charity that provides help and support for children with acquired brain injury (ie that they were not born with). At their headquarters in Surrey they have a special school, residential rehabilitation centre and they offer affected children short breaks and camps and clubs during the school holidays.
CHIPS
Specialised powered wheelchair grants
CHIPS was founded on behalf of the UK Gaming industry, in order to raise funds to purchase specialised powered wheelchairs for youngsters with varying disabilities.
They provide wheelchairs for children who would otherwise have no way of getting around on their own. CHIPS funds the wheelchairs that the NHS cannot or will not provide and that the parents cannot afford to buy.
ClearVision Books
Lending service of braille and tactile books
ClearVision is a postal lending library of children’s books in print, braille and tactile books, designed to be shared by visually impaired, sighted children and adults. They lend books all across the UK and Ireland.
CMV Action UK
Charity supporting families affected by congenital CMV (Cytomegalovirus)
CMV, or Cytomegalovirus, is a common virus that can infect people of all ages. Once CMV is in a person’s body, it stays there for life. Most healthy adults and children who become infected will have no signs or symptoms and no long term effects from CMV. It can however pose serious risks to unborn babies if a pregnant woman catches it for the first time. Congenital CMV is when a baby has been infected before birth. It is one of the leading causes of hearing loss in children and one of the main causes of childhood disability.
CMV Action is the only UK charity offering advice and support to families affected by congenital CMV (cCMV).
Communication Matters
Charity for those who find it difficult to communicate
Communication Matters is a UK-wide charity that supports people of all ages who find it difficult to communicate because they have little or no clear speech. Their website has a wide range of information on Augmentative and Alternative Communication (AAC) and they provide some small grants of upto £200 towards communication equipment.
Contact
Charity that provides support and advice for families of disabled children
Is a charity that provides support and advice for families of disabled children. Their website is full of useful information and advice and they offer a “listening ear service” for parents and carers who are looking for emotional support. In addition to this they also operate a not for profit shop that sells toys, clothing and sensory products.
CP Teens
Social activities for young people with physical disabilities
CP Teens is a charity that organises social activities for young people affected by physical disabilities such as Cerebral Palsy. While it's name suggests it caters for teenagers, it actually assists those from 0 to 25 years, with primary focus being on 8 to 25. They also host several online support communities.
Cracker Jacks Children's Trust
Grants for specialist equipment, sensory toys and respite breaks
Offer grants of upto £700 (although their website lists numerous grants that have been made for considerably more than this) for specialist equipment/sensory toys and also for respite breaks.
CS Disabled Holidays
Financial help for holidays for people with severe physical disabilities
CS Disabled Holidays provide financial help for holidays for people living with severe physical disability due to neurological or neuromuscular disorders.
CS Disabled Holidays are willing to fund up to 50% of the costs (to an absolute limit of £2,000) of a holiday of one or two weeks per year. It is anticipated that applicants will have also sought assistance from relevant statutory sources and disease-specific charities for the balance.
Cystic Fibrosis Trust
Charity supporting those living with Cystic Fibrosis
The Cystic Fibrosis trust supports people living with Cystic Fibrosis. Their website provides information about the condition and information about the support they provide.
They provide a range of welfare grants to help in times of financial need. These include grants for emergencies, transplant assessments, health and wellbeing, holidays and breaks, home care, education and prescription pre-payment certificates.
Daisy Garland
Charity supporting those with drug resistant epilepsy
The Daisy Garland is a charity working exclusively for children and families whose lives have been touched by drug-resistant epilepsy.
The help they offer is life-changing and wide ranging:
They fund ketogenic dietitians and dietetic support workers.
They give grants for life-saving monitors.
Daisy's Keto Café is an on-line round-the-clock parent support group
They offer vital one-to-one family support
and they award small, one-off grants for special needs equipment
Dame Vera Lynn Children's Charity
Supports children with Cerebral Palsy and other motor learning impairments
Is a charity based near Haywards Heath (West Sussex) that supports under 5’s with Cerebral Palsy and other motor learning impairments to realise their full potential. They provide an early intervention service based on the methodology of Conductive Education. Specific services include small group conductive education sessions, music therapy, swimming, sensory sessions and messy play, portage home play, parent support.
Demand
Disability equipment advice, supply and adaptation
As well as advising people with disabilities on the best equipment to suit their needs, Demand also design and manufacture from scratch & modify and enhance people's existing equipment to help it work better for them.
They help people of any age, and with any kind of disability regardless of their financial circumstance.
DEPHER
Discounted plumbing and heating services for those with disabilities
Disability and Elderly Plumbing and Heating Emergency Repair (DEPHER) provides vulnerable people with access to affordable and vital emergency works. It relies on public donations to cover all labour and materials, provides free services during winter months and discounted during summer.
When funding is available they are able to offer partial or fully discounted costs on emergency works which include the following: Gas leaks, No heating, No hot water
Designability
Specialist powered wheelchair loan scheme
Designability's main product is the Wizzybug powered indoor / outdoor wheelchair, which is designed for preschool children aged from 14 months. These are available to purchase, but they also operate a free loan scheme for families in the UK. In addition to this their website also features some other products designed to make disabled people's lives easier.
Dial-A-Dream
Dream granting charity for children with life limiting / threatening illnesses
Dial-A-Dream aims to make the Dreams of children aged between 3 and 18 years, suffering from a diagnosed life limiting and life threatening illness, become a reality.
Dickie Bird Foundation
Sporting grants for disadvantaged children
The vision of the Foundation is to assist young people under 16 years of age to participate, to the best of their ability, in the sport of their choice irrespective of their social circumstances, culture or ethnicity and to ensure that, in doing so, they improve their chances both inside and outside sport.
Grants of upto £500 can be awarded to disadvantaged children aged under 16 for essential sports equipment and clothing.
Disability Grants Website
Grants listing website
Disability Grants is a website that lists a massive number of grants that are available throughout the UK. It also has various other information and resources about various disabilities and a map of holiday caravans that are owned by charities around the UK.
https://www.disability-grants.org/holiday-caravans-for-the-disabled.html
Disability Rights
Information website
Disability Rights has number of useful factsheets on their website, including a really comprehensive one about employing personal assistants (PAs).
https://www.disabilityrightsuk.org/being-control-getting-personal-assistants-pas
Disability Snowsport UK
Charity providing skiing for those with disabilities
Disability Snowsport UK is a charity that operates ski schools at various locations throughout the UK as well as delivering opportunities to ski and snowboard in a mountain environment worldwide. They have groups around the UK.
Disabled Blue Badge
Accessing disabled parking
These are available to more people than you might think. Eligibility is not only for those who cannot walk or have difficulty walking, but you could also be entitled to one should your child have behavioural difficulties due to for example being Autistic or having a developmental delay and being unaware of danger around them, or if they need to be near your vehicle when out due to a health condition. If your child receives the high rate mobility component of Disability Living Allowance they'll automatically be entitled to a Blue Badge.
https://www.gov.uk/apply-blue-badge
For general regulations about where you can park using your blue badge see:
Blue Badges offer a number of advantages in addition to being able to park in disabled parking bays, you'll be able to park in many paid for car parks for free (always check), not have to pay drop off charges at some airports, some areas you can park on double yellow lines and some ferry companies offer reduced price tickets for blue badge holders.
If you'll be driving in Central London, you can register so you don't have to pay the Congestion Charge (for a one off £10 fee) if you or your child have a Blue Badge.
https://tfl.gov.uk/modes/driving/congestion-charge/discounts-and-exemptions?intcmp=2133
If you're thinking of using your Blue Badge in Europe, this site provides am explanation sheet to help local authorities recognise your badge, translated into many languages, to display next to your blue badge:
https://www.icarhireinsurance.com/disabled-driving-in-europe
Disabled Facilities Grant
Grant to make adapations to your home to cater for disabilities
If you or your child are disabled and need to make changes to your home you can apply to your council for a disabled facilities grant of upto £30,000. These could be for things such as widening doors or installing ramps, stairlifts, downstairs bathrooms or adapting heating and lighting controls to make them easier to use etc.
If you receive a disabled facilities grant it won't affect any benefits you're on.
Discount For Carers Cashback Card
The “Ode Card” is a prepaid Visa debit card (£2.99 per year) that pays you cashback of upto 15.5% when you use it to shop in store or online. It can be used a wide range of stores, including big supermarkets such as Asda, Sainsbury's and Waitrose. They also have a smatphone app to let you check your card balance and see how much cashback you've earned.
Discounts For Leisure Activities / Attractions
Holiday accommodation for families affected by childhood cancer and other life threatening conditions
Many children's leisure activities and attractions offer reduced or free admission for children with SEND and/or their carers. It's worth checking their websites prior to visiting and always taking a copy of your Carers Allowance and DLA award letters as proof of entitlement.
Down Syndrome Development Trust
Support charity for those affected by Down Syndrome
DSDT's "service includes support to individuals and their families via research based training workshops, outreach, educational enrichment and social groups for children and young people living with Down syndrome".
Down's Syndrome Association
Support charity for those affected by Down's Syndrome
"We are parents of children and young people with Down syndrome who understand and passionately believe in the power and value of peer and expert support, together with access to contemporary relevant information. Our aim is to reach as many expectant and new parents of a little one with Down syndrome as we can. We are determined to ensure no parent feels alone, so provide a space where parents have someone to turn to, to share any concerns, ask any question and celebrate all the triumphs.
We believe in collaborating with experts in their chosen field to disseminate information, share best practise and try to prevent folk reinventing wheels! By doing so we can empower, enlighten, and educate our parents, the professionals who work with our children and young people, policy makers, Parliamentarians as well as the wider public."
Their website also features a list of support groups across the UK:
Down's Syndrome Research Foundation UK
"We are the UK’s only Down’s syndrome research charity. Our vision is a long, healthy, happy life for people with Down’s syndrome (DS) and their families.
We will bring the best scientific research to the issues affecting our community by:
Funding and promoting ground-breaking medical research;
Improving understanding of Down’s syndrome;
Supporting the human rights of people with Down’s syndrome and their families through advocacy."
Down's Syndrome Scotland
Support Charity for those affected by Down's Syndrome in Scotland
"Down’s Syndrome Scotland is a member-led charity, established in 1982. We are the only charity in Scotland dedicated solely to supporting people with Down’s syndrome and their families and carers.
We provide “all through life” support nationally across Scotland.
We know that every person with Down’s syndrome is a unique individual, full of potential.
We support people with Down’s syndrome to reach their fullest potential by providing a range of services, influencing public policy and by changing attitudes."
Dravet Syndrome UK
Support Charity for those affected by Dravet Syndrome
Dravet Syndrome UK is dedicated to improving the lives of those affected by Dravet Syndrome (a severe form of Epilepsy) through support, education and medical research.
They can provide grants for seizure monitors and fund an annual weekend away for families at Centre Parcs.
Dream Makers
Charity offers holidays for disabled and terminally ill and can provide equipment
Dream Makers is a charity that offers holidays to the disabled, terminally ill, underprivileged and those with special needs.
They have also granted requests for TVs for the visually impaired and tablets to help with special needs learning, wheelchairs and specially adapted bikes etc
Dreamflight
Orlando dream holidays for 8-14 year olds with serious illness or disability
Dreamflight is a UK charity that takes children aged 8-14 (only the children, no parents) with a serious illness or disability on their holiday of a lifetime to Orlando. The experience can be life-changing and gives young people an opportunity to do something that medicine can’t: discover independence, confidence and a new outlook.
Dreams Come True
Dream granting charity for young people with life limiting or serious illnesses
Dreams Come True is a charity that makes dreams come true for children and young people with life-limiting and serious illnesses living in the UK’s most disadvantaged communities as they believe that every child has the fundamental right to dream.
Education Advocacy
Specialist SEN advocates, publish a map of all non-maintained special schools in the UK
Are specialist SEN advocates (they can help with EHCP applications, reviews and challenges, but they charge for this service - this isn't the reason they're listed as I have no experience of their services, good or bad). On their website they publish a map which shows all the non-maintained special schools in the UK.
ELIFAR
Grants for specialist equipment for for disabled young people
ELIFAR is a small charity which aims to help improve the care, facilities and equipment available to profoundly disabled children and young adults both at home or in residential care. They provide grants to fund the purchase of a wide range of highly specialised equipment, which would otherwise be unavailable because of a lack of funds or because there is no statutory provision, for children and young people up to the age of 28.
Ellen MacArthur Cancer Trust
Sailing adventures for young people and their siblings who have been affected by cancer
The Ellen MacArthur Cancer Trust offers four day sailing adventures for 8-17 and 18-24 year olds who have been treated for cancer and also for their siblings.
Epilepsy Society
Support Charity
"The UK’s only charity transforming the lives of people with epilepsy through world-leading research, advocacy and care". Their website also contains a wealth of information about Epilepsy.
Everyone Can
Charity that helps those with disabilities with assistive technology
Formerly known as The Aidis Trust, Everyone Can is a charity which has been doing everything it can so that people living with disabilities are able to control their home environment, communicate, and in short, live their lives with as much ease and independence as possible.
They have been able to transform the lives of hundreds of disabled people by matching them with the best-suited and most innovative assistive technology.
They will conduct an assessment, initially over the phone, but then in person if required, to see what assistive technology would be best suited to help improve your life.
After the assessment they will write up a report which documents the specific equipment or software settings that will really make a positive difference to the disabled person’s life. Unfortunately they aren’t able to fund the technology that they suggest but they will do everything they can to help you find funders or suggest funding options.
They also host regular gaming sessions at their headquarters in Manchester and hold free Assistive Technology training workshops.
Facebook Groups
There are many national and local Facebook groups focussed on SEND children and their carers. Just search for the relevant
condition and add your town or area if you want to find one that's more locally focussed. Facebook is then pretty good at
recommending other relevant groups. They can be a great place to ask questions as there will normally be someone who has already been through what you are going through to offer advice. It can also be really useful to see what other people are saying / asking so you can learn from their experiences and if nothing else, just realise that there are others out there going through similar things to you. They're normally well moderated and are usually private groups, so you'll have to apply to join and have your membership approved by a moderator before being able to access them.
There are also a variety of groups offering support and advice to those applying for DLA (Disability Living Allowance) and EHCPs (Education, Health and Care Plans).
There are also quite a few groups dedicated to special needs equipment and people selling equipment that they no longer need. Some of this equipment can be extremely expensive to buy new and you can save a lot of money when buying second hand. Just search for “Special needs equipment UK” and select the relevant group.
Family Action
Support for the disadvantaged
Family Action transforms lives by providing practical, emotional and financial support to those who are experiencing poverty, disadvantage and social isolation across the country. Their website features a search function to help you find local support services that they offer.
As well as the support services they provide, they also offer a small grants service for Welfare or Educational purposes.
Ferry Discounts With Blue Badge
A few ferry companies in the UK offer discounted fares to Blue Badge holders.
Caledonian MacBrayne offer 25% discount off the price of a vehicle ticket on their services to the Scottish Islands:
https://www.calmac.co.uk/article/5315/Do-you-offer-discounts-for-vehicles-of-Blue-Badge-Holders
Hover Travel offer discounted fares for carers, blue badge holders and those in receipt of DLA on their hovercraft services to the Isle of Wight:
https://www.hovertravel.co.uk/concessionary-fares
Red Funnel Ferries offer a 20% discount on their services between Southampton and the Isle of Wight:
Wight Link Ferries offer up to a 25% discount on tickets on their services to and from the Isle of Wight:
https://www.wightlink.co.uk/tickets/accessible-travel#disability-discounts
Find A Voice
Specialist communication equipment for those with severe communication difficulties
Based in Ashford, Kent, Find A Voice is a charity that supports children and adults who have a severe speech, language or communication difficulty, and who may require some form of augmentative and alternative communication (AAC) support. This can include signing, symbols or a communication aid. Support is provided in person, by telephone and via their website.
They are able to provide specialist equipment on a no-cost trial basis to build basic communication skills, establish suitability of use and evidence of need
Florence Nightingale Aid In Sickness Trust
Life enhancing grants for the ill, convalescent and disabled
The Florence Nightingale Aid in Sickness Trust provides life enhancing grants to help people of all ages in need who are ill, convalescent or disabled.
These grants are used to provide medical and household aids to alleviate sickness and make a huge difference to people’s ability to manage at home and live as independently as possible.
They do not fund holidays but will provide grants towards organised specialist breaks for children and young adults are considered to give the carer at home a well earned rest.
Fulfil The Wish
Activities and holidays for young people with lifelong / life limiting conditions
Fulfil the Wish is a registered charity which was founded in 2000 to provide activity and sightseeing holidays for children and young people who have lifelong and life-limiting disabilities.
Glasspool Charity Trust
Small grants for everyday items
Is a UK wide charity that provides timely, small, one-off grants to individuals, couples and families for everyday items to help them cope when things get tough, equip them to manage better day-to-day and enable them to build a stronger future. Please note they only accept applications from support agencies on behalf of the people they support, not from individuals themselves.
Guide Dogs
Charity that supports blind and partially sighted people, providing guide dogs, support and grants
Founded in 1934, Blind Dogs is a charity that helps blind and partially-sighted people through the provision of guide dogs. They also provide support and advice and can give grants for assistive technology and sensory equipment.