Early years and SENDView all services
Learning that your baby or child has special educational needs or a disability (SEND) will feel different for each parent and family unit, depending on the individual needs of your child and your circumstances. Please read the sections below for practical advice from NHS.uk and NCT on caring for a disabled child.
It can be very difficult to take in information if you receive unexpected news, so it is important you get some help if your baby is diagnosed with a disability. It may be helpful to take someone with you to any of your baby's appointments - not only will they be a second pair of eyes and ears, but they can offer you emotional support and help you to ask questions. If you have time, write down any questions you have in advance.
Other people's experiences will be different from yours. However, it can be very reassuring to speak to other families whose children have special educational needs and disabilities.
Here are some places to contact for help, advice and support:
- Liverpool's Parent and Carer Forum is LivPaC. They can provide practical advice and support throughout your journey.
- Your local Children's Centre will have a number of SEND-specific services, and a disability link worker onsite.
- Liverpool also have an Early Notification team which supports families to access the best possible start in life by providing advice, information, and guidance to families to help them take the next steps required to help their children thrive. It is important to us that we are able to offer this help as early as possible to prevent escalation. If you would like to be referred or find out more, please speak to any of your child's health professionals (GP, health visitor or other relevant professional. You can also be automatically referred if your child is under 5 and you sign the Disabled Children's Register.
If you think you need support, contact Liverpool's Children's Social Care. A social worker will then talk to you about the needs of your family, including health, social care and education.
For further support in Liverpool, visit the SEND Local Offer and browse the range of support services available.
Chris & Laura are the Early Notification Team within Liverpool, who are available to support families by providing advice, information, and guidance to help families take the next steps required to help their children thrive. It is important to us that we can offer this help as early as possible to prevent escalation.
You can be automatically referred if your child is under 5 and you sign the Disabled Children's Register. Health Professionals will also notify Chris & Laura of your child after the 2year review (although it can be earlier in some cases).
Once your Health Visitor has notified the team, your details will be passed onto Chris & Laura who will contact you to discuss the next steps in supporting your family.
The Early Notification team can also be contacted via;
- Gateway Support (Walk-in) at your Local Children’s Centre. (Visit Local Offer Page for times & Venue – create page and insert link)
Chris & Laura can support you through signposting you to SEND Specific services. Where you can understand the specific service, you need and what they provide.
- Addvanced Solutions
- ASD training Team
- Together Trust
- Down Syndrome Liverpool
- Neurodiversity Early Years Service
- SWAN groups (Local Children Centre/Family Hub)
A conversation with Laura or Chris can also provide information around;
Eligibility for Disability Living Allowance, Childcare funding & accessing childcare providers.
A disabled child may have problems with feeding and eating for many different reasons, such as:
- physical problems that cause difficulty swallowing, chewing, sucking or digesting certain foods
- limited mobility, which might make it difficult to sit up to eat or drink
- a learning disability
It might take longer for your child to be able to feed themselves, but developing the skills to do so can also help them in other ways, such as with speech and language development and co-ordination.
Your health visitor can advise you on many aspects of feeding and weaning your baby.
As your child grows, you might be able to get a referral from your GP or health visitor for specialist help.
This could include:
- a speech and language therapist – to help with physical issues like chewing and swallowing
- an occupational therapist – to advise you about aids that might help your child, such as special plates, bowls, cups, adapted cutlery or non-slip mats
- a physiotherapist or occupational therapist – to advise you on getting your child into the right physical position to eat
- a dietitian – to help you if you're concerned that your child isn't eating enough
If your child needs to be fed through a tube that goes directly into their stomach, you can get advice from the support group PINNT (Patients on Intravenous and Naso-gastric and Nutrition Therapy).
These issues can take a toll on your own wellbeing. If you're feeling isolated, you may find it helpful to search for Carers emotional support services in your area.
Disabled children can have sleep problems for a range of physical reasons, such as muscle spasms or breathing difficulties, depending on their particular health problem.
Children with some learning disabilities may find it hard to understand why and when they need to sleep.
Your health visitor or community nurse should be able to suggest ways to encourage good sleep.
Your GP may also be able to help or refer you to a sleep specialist or psychologist if necessary.
Contact a Family also has useful tips and support on helping your child to sleep.
If your sleep is constantly interrupted, you can ask for a carer's assessment from social services. They may be able to provide short breaks from caring so you can get some undisturbed sleep.
Your child might also qualify for Disability Living Allowance (DLA), or a higher rate of DLA if they already get it, if they need constant care and attention at night because of sleep problems.
You can also find support in your area in the directory of local carers' services.
All children are different, but most show signs of being ready to learn to use the toilet at around 2 or 3 years old.
Some disabled children may not be ready until they're older, or they may take longer to learn.
This could be because of learning disabilities or physical challenges, such as impaired mobility, movement skills or muscle tone.
If your child's health condition affects their ability to control their bladder or bowel, their doctor may be able to refer you to a continence specialist.
An occupational therapist can advise you about special potties or toilet seats if your child needs help with sitting, or about any bathroom adaptations that might be useful.
A physiotherapist can advise about issues such as moving and handling your child, or finding the best position for your child to be able to use the toilet.
Your local health authority's incontinence service may be able to supply items such as larger nappies, pads and bedding protection once your child is over a certain age (this may vary from area to area). If they're unable to do this, they can tell you where you can buy them privately.
If you have a water meter and your child's health condition means that you have to do a lot of laundry, you can apply to your water supply company to cap the cost of your water under the WaterSure scheme. Ofwat has contact details for water companies.
The Family Fund can also give grants to low-income families for a washing machine or tumble drier.
Search the directory of carers' services for local support groups and services.
If you're concerned about your child's ability to move around normally, your GP may refer you to a physiotherapist to assess their mobility needs.
As part of the assessment, the physiotherapist will discuss mobility aids that could help your child, such as:
- walking aids – which you can loan from the local hospital or community health service
- wheelchairs, buggies and adapted seating – from your local NHS wheelchair service
You can get contact details for your local wheelchair service from your GP or physiotherapist.
The charity Whizz-Kidz can provide children under 18 with mobility equipment that's not available from the NHS. They also offer wheelchair skills training. Go Kids Go! also provides free wheelchair skills courses.
If you drive, you could apply for road tax exemption and a Blue Badge for disabled parking.
The Blue Badge may be awarded if your child is 2 years old or over and has a permanent disability that makes walking difficult.
If your child is under the age of 2, you may get a Blue Badge if they need to have bulky medical equipment with them or need to be near the vehicle in case they require urgent medical treatment.
Challenging behaviour can be common in children with learning or sensory disabilities.
This is because communication problems can make it difficult for them to express their needs, likes and dislikes.
Challenging behaviour can take many forms, from aggression to withdrawal.
Read more on challenging behaviour in children.
Some physical conditions and learning disabilities can mean that your child has little or no clear speech, or their speech may be slow to develop.
You may worry about how well they'll communicate with you and other people as they grow up.
A wide range of equipment and techniques can support or replace speech, including signing (perhaps using a system like Makaton), symbols, word boards and electronic voice output communication aids (VOCAs).
A speech and language therapist can assess your child and help you decide the most appropriate aids.
Find out more about caring and communication problems.
Mencap offer the following advice to parents whose child is diagnosed with a learning disability soon after birth.
A learning disability diagnosis could be due to:
- something that developed before birth
- something during birth - for example if the baby did not get enough oxygen, or was born too early
- a childhood illness or physical accident during early childhood.
Spotting the signs
The early signs of a learning disability can be difficult to spot, but may include the following:
- babies may have trouble feeding, for example sucking and digesting
- babies may be delayed learning to sit or stand
- pre-school children may be slow to talk or have difficulty pronouncing words and short sentences, or learning new words
- school-aged children may find reading and writing difficult or have problems understanding information and instructions
- some children discover they have a learning disability when they become teenagers and their life becomes more complex, with new emotions and responsibilities.
Getting a diagnosis
A GP usually makes a diagnosis of a learning disability, but it is often parents or teachers who first become aware that a child is having difficulties in certain areas.
A learning disability may be diagnosed in various ways, such as:
- at a developmental check. All children have checks to monitor their growth rate and highlight any health problems. Health visitors and GPs will also look at what age the child is reaching their development milestones, such as learning to talk and developing physical skills.
- through psychological checks. These tests look at the child’s ability and compare it with what is considered typical for a child of that age.
- being identified by your child’s teacher
- a clinical psychologist may be able to diagnose an adult’s learning disability, by assessing their level of understanding.
For some parents getting a diagnosis can be a struggle. Professionals can be confused by some characteristics of learning disability, and even experts can struggle to make an accurate diagnosis.
Getting the support of your health visitor and GP is often the first step. If your child has not received a diagnosis but you have concerns about their development you should contact your GP, who should be able to offer advice and refer you to a specialist if necessary.
Some parents might never receive a diagnosis, or may be told their child has global developmental delay. This is a difficult term to understand, but it indicates that a child will take more time to reach milestones in many areas of their development.
How to get the support you need
Contact the Learning Disability Helpline, Mencap's advice and support line, for guidance and information about what support we can offer you.
Or why not take a look at Mencap's online community? This is a space for parents and family carers of people with a learning disability to share experiences, advice and support.
- The NHS Early Support Programme no longer operates. But among their resources you can find a comprehensive list of over 100 UK organisations that relate to disabled children.
- Mencap is a charity that provides information and support to families of children with learning disabilities
- The charity Bliss can provide advice and support to families with a baby who was born premature or sick.
- Call the Carers Direct helpline (0800 055 6112) if you need help with your caring role and want to talk to someone.
- Health charities like the Down's Syndrome Association can give advice and guidance.
- The charity Contact has advice and information for families with disabled children.
- Newlife is a charity for children with disabilities. They can also help with grants and loans for special equipment for your child.
- NHS Choices provides information on caring for a child with disabilities.
- Best Beginnings: Small Wonders project provides short videos on life with a premature baby to help parents get involved in their baby’s care.
- Cerebra offer an information and support service for parents, carers and others involved with any child with a brain-related condition.
- Genetic Alliance UK is a national charity supporting people who are affected by genetic disorders.
- The Sickle Cell Society provides information, counselling and care for people with sickle cell disorders as well as their families.
- Shine provides specialist support for anyone living with spina bifida and/or hydrocephalus, and to parents and carers.
- The Cystic Fibrosis Trust has a helpline (0300 373 1000), plus information and support on any aspect of cystic fibrosis, including financial support like benefits and grants.
- SOFT is the support organisation for trisomy 13 or 18 and related disorders.