Information for parents
Thank you to parents from Northamptonshire Parent Forum Group, Northamptonshire Down’s Syndrome Group and Sends4Dads for their time. Parents explained what had helped them, and what had been difficult. They hope that their experiences and knowledge will help other parents.
Early days
Some families know before their child is born that the baby is going to have a disability of some kind. For other families, their children's special educational needs become known when assessments happen. Some children will cope when they are younger but will need more help as they get older.
Parents sometimes get advice from their midwife or health care professional. Often, they will need to find out information for themselves. There are lots of national agencies and charities that can help families with advice. You can ask for more information if you need more support after a diagnosis.
Parents said that the experiences they had with their children were not always as hard, especially when they were still young. Sometimes they were told the ‘worst case’ scenario by their health care professional.
Tip: Use the SEND Local Offer directory to find charities and national organisations to offer advice.
The Children’s Development Centre at Northampton General Hospital can offer guidance and information. Your child may get referred to them by your health specialist.
Benefits and financial advice
You may get extra benefits if your child has a disability. You can find out more information on Turn2Us benefits calculator.
Your child may be eligible for the Disability Living Allowance (DLA). This is a benefit paid to parents and carers until the child’s 16th birthday.
You will need to have applied for Personal Independence Payment before they are 16 as there is not an automatic transfer from one benefit to another.
Contact can provide advice about benefits and DLA.
Sibling support
Brothers and sisters are ‘Young Carers’ if they help take care of their disabled sibling. You will find Northamptonshire Young Carers helpful. There are national organisations such as Young Sibs who can support siblings of all ages.
Assessments
Parents said that regular assessments are very helpful and said to make sure that they are not missed. Assessments used in the early years include:
- Progress check at two years. This can be by the Health Visitor or in the Early Years setting
- Reception Baseline Assessment (RBA)
- Early Years Foundation Stage Profile (EYFSP)
Contact your child’s health visitor or early years setting for information.
Support groups
All our parents found support groups helpful. These can be groups with children who have the same diagnosis, pan-disability groups, groups at school as well as your extended family. You can find many groups through the SEND Local Offer. If you need some help finding a suitable network, please let the SEND Local Offer team know by emailing [email protected].
Local parental forum groups are a good sources of knowledge and information.
These are often run by volunteers and always welcome new members.
Counselling for parents
Parents have said that there were occasions when they needed professional counselling. Ask your care professionals to organise this. Organisations such as Family Life can provide support.
The Counselling Directory can provide details of independent counsellors.
Respite care
Respite care is often described as ‘Short Breaks’. It is provided by commissioned services. The SEND Local Offer provides up to date information. The youth clubs are for children aged 8 and over. and holiday activities can support children aged from 5, but often for a shorter session.
Arrangements for overnight care is by your health care team or the Disabled Children’s Team in Northamptonshire Children’s Trust.
Early Years help
"Portage" is a service for children with SEND, who have not yet started at school.
The National Portage Association is the national organisation for services, practitioners, and parents.
Local Authorities use Portage home visitors to support children and families in the community. The SEND Support Service manage this in West Northants and all applications are considered by their Panel.
The Home Start scheme - Northampton or Daventry and South Northants may also be able to help if the family has a child aged under 5.
Access to Social Care
Social Care support is always through a single, referral route which is the Multi Agency Safeguarding Hub (MASH). A disabled child will have a Child in Need assessment and it helps to ask for this when referring.
School age
Choosing the right school for your child is always a big decision for all parents. You may need to consider schools that are not the nearest local school. West Northants Schools are on the SEND Local Offer directory. You can also use the government website to search for schools.
The SEND IASS have produced a list of questions that you can use to help choose a school.
IPSEA may also able to help you.
SEND and disabilities vary with each individual. Schools use a tool, in the form of a booklet, called ‘The Ranges (3MB PDF)’ to help them support the variety of needs that children have in school.
For the majority of children, their mainstream school should be able to support their educational needs, with specialist help and support from the educational network in West Northamptonshire to support all pupils.
If you are worried that your son or daughter is not being supported as they need in school, you should talk to the class teacher or the form teacher at secondary school. The SENDIAS can help you if you need some ideas about what to say and what to expect. They can also advise you on the Equality Act 2010 and reasonable adjustments that can be made.
Special Schools and Units are for pupils with an Education Health and Care plan (EHCP). Details about the EHC plans, how to request a statutory assessment, and the annual review are on the web pages dedicated to this process. It is a complex process and takes 20 weeks to complete.
As your child matures, they may start to use the internet and social media. There is a lot of advice and guidance for families to support their young people with this next step. Information about internet safety and bullying is on the ‘Young Northants’ webpages.
You must report any worries of bullying to the school if you think this is happening to your son or daughter.
The Antibullying Alliance provides information specifically for disabled children who may be experiencing this.
Discounts and offers
Our parent group found that discounts for carers and parents are often available. It is always worth asking before arrival. They have recommended these for some ideas:
- Legoland
- Theatre: use the Access card from Ambassador Theatre Group
- Cinema : CEA Card
- Sunflower lanyards – these have become widely recognized to identify someone who has additional needs and can be bought in a number of places.
Growing up
Moving into adulthood is a time of great change, both for parents and young people. Our NPFG and partners in Health, Education and Care have co-produced comprehensive information that can be found on our Preparation for Adulthood page.
There is a local Keep Safe Scheme that you can register with when your young person starts to go out and about independently.
The Local Offer webpages provides information about transport, both school transport and public transport. Airports usually have accessible travel arrangements, but you need to inform them in advance of your needs.
Understanding the Mental Capacity Act at this stage of life is important. Young people may be able to make decisions about what they wear and what time they want to go to bed but may not be able to make financial decisions for themselves. More information is on our Preparation For Adulthood page.
Other useful ideas from our parent groups
SEND Services and abbreviations
- Children's 0 -19 universal Service – Health visitors and schools nurses
- CDC – Child Development Centre
- CIN and CP – Child in Need and Child Protection
- DCT – The Disabled Children’s Team in Northamptonshire’s Children’s Trust (NCT)
- EHCP – Education Health and Care Plans – managed by the EHC Team
- EHA – Early Help Assessments - there are a number of agencies and teams that offer early help to families identified by a professional
- EHE – Electively Home Educated
- EOTAS – Education Other Than At School – this is only by arrangement with the Local Authority, and is different to EHE
- PECS – Picture Exchange Communication System Picture commonly used by pre-verbal or non-verbal children and young people
- RSA – Request for Statutory Assessment ( of Educational needs – this is part of the EHC process)
- SALT – Speech and Language Therapy
- SASS – School Attendance Support Service
- SIS – Sensory Impairment Service – (Teacher of the Deaf TOD, Teacher of the Visually Impaired TOVI)
- SSS – SEND Support Services – offer workshops and practical advice
West Northants Voices in Partnership (our parent forum group) have created a helpful jargon buster on their website.
Last updated 25 April 2024