What is SEND?
SEND stands for Special Educational Needs and Disabilities. It's a term that encompasses a wide range of conditions and disabilities, any learning difficulty or disability that means your child needs special health and / or educational support.
Some disabilities may be apparent at birth or very early on, but with some developmental conditions like Autism, it might not be so obvious straight away. Most children start at pretty much the same point when born and their developmental conditions only become more apparent as their development diverges from their neuro-typical peers. So before you can even start to try and get help for your child, you must first realise that there is something different going on with them and then try and identify what the reason for this is.
A starting point during early years would be your health visitor or (at any age) your GP. Speak to them about your concerns and if they are unable to provide you with the help that you think you need, request a referral to a Paediatrician. As with any profession, some health visitors / GPs are better than others - our health visitor was very dismissive of our concerns about our son (who now at 5 years old is diagnosed as Autistic, non-verbal, Sensory Processing Disorder, ARFID and Global Developmental Delay), but even as first time parents we were certain that there was something different about him. As parents you know your child best, if you think something isn't right, don't take no for an answer!
Another good place to get advice and to be able to easily talk to professionals experienced with SEND children is your local Family Centre (sometimes called Children's Centres, Family Hubs etc). They will be able to give you advice about how to get assistance in your local area and in some cases make referrals for you.
Waiting lists for for initial appointments with Paediatricians vary by area but can be very long (we had to wait 9 months for our first appointment). We decided that we couldn't wait this long and we needed to figure out what was happening more quickly. We found a Paediatrician who specialised in Developmental Issues (by searching on the Spire Healthcare website https://www.spirehealthcare.com/ ) and paid to see them privately. This wasn't cheap (approx £300 for one consultation) and we know that not everyone will be in a position to be able to do this, but it was honestly some of the best money we have ever spent. We were able to book an appointment the following week and the doctor we saw was fantastic. She was able to tell us roughly what was going on with our son (she said he was almost certainly Autistic, something we hadn't really considered before this) and gave us advice about where to go from there to get him help. We received a written report from this Doctor and we used this to get people in the NHS to start paying attention to us and our concerns. This consultation answered some of our questions and gave us the direction we needed to start getting our son help right away. This was not an official diagnosis, these are available privately, but if you decide to do this be careful who you choose to use - private diagnoses can be very expensive and it's important that you get a diagnosis that will be recognised by your local authority. Even if you do decide to go down the private route, stay on the NHS waiting list as it will be important for your child to be "in the system" in the future, to access support through the NHS and your local authority.
Great, So You Know What The Issue Is, What Next?!
Knowing what the issue is will only be the starting point for most people. For most special needs / disabilities there is no magic cure, they are often life long conditions that you and your child will have to learn to cope with. Support available through the NHS can range from fantastic to non-existant, and there are often long waiting lists for what is available. For developmental conditions, the earlier you can start to get your child help, the greater the impact it is likely to have on them. Research their condition - Google it and find out as much information as you can. Almost all conditions will have a national charity or organisation dedicated to them and their websites are normally full of useful information. Many people might not like Facebook, but it can be an excellent resource for finding out information about SEND and finding help. Search for groups about your child's condition (there are often national and regional ones). They are full of other parents dealing with what you will be going through and you'll be able to find advice, support and ask any questions you may have.
Get The Support That You Need And Are Entitled To
We setup this website because there's a whole load of support available to SEND families, but much of it isn't widely known about or publicised. For example, it's estimated that every year in the UK there are £15 billion of unclaimed benefits that people would have been entitled to, while research from SCOPE shows that on average a family with a disabled child would have to pay £581 a month to have the same standard of living as a family with a non-disabled child. We're now over 5 years into our SEND journey with our son and we're still finding out about things we would have been entitled to had we known about them. These are the first things we would recommend you look at:
Disability Living Allowance (DLA)
Is a government benefit - If your child requires more care than their peers typically would do, chances are you'll be able to claim DLA for them. It's not means tested which means that you can claim regardless of what your income is and your child does not need official diagnoses in order to be able to claim (although they would likely help your claim). See more here: DLA
Carers Allowance
If you care for your child for 35 hours a week or more and they're in receipt of at least Middle Rate Care DLA, you'll be entitled to claim carers allowance. Carers allowance is a means tested benefit, which means you'll only be able to claim if you have a relatively low income.
See more here: Carers Allowance
Education, Health And Care Plan (EHCP)
Depending on the needs of your child, it may be worth considering applying for an EHCP. “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.” Your local authority conduct a detailed assessment of your child and then, if they decide it's appropriate, issue an EHCP, which is a legal document that sets out the support that your child must be given and allocates the extra funding for this. If support is not available from your local authority, an EHCP could allocate you funding to source appropriate support or therapy independently. An EHCP could also allow your child to access a special school if that would better cater for their needs than a mainstream school. See more here: EHCP
Carers Support
When raising a child with SEND it's easy to forget that you're now a carer and to neglect your own needs. You're no use to your child if you can't cope yourself. There are many carers support organisations and your local authority may be able to provide you with support as well as your child. Consider applying for a needs assessment from your local authority to access support from them and look at the Carers Support section here. You can search for carers support organisations local to you at carers.org
Assistance with equipment, therapy and anything else that costs money!
There are many organisations that offer grants and financial support to those in need. Most are means tested (which means they'll only be available to you if your income is below a certain level or you're in receipt of certain benefits) to ensure that only those who really need the help receive it. A good starting point for most would be "Family Fund" (see listing under "National Support" section). This 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, Housing Benefit etc).
Then look through the rest of the listings on this website of support and grants that might be available to you. Particularly take a look at the "Other Support" page as some of these things you might not have thought about - did you know that your child might be entitled to a Disabled Blue Badge even if they can walk, or you might be able to get a larger wheelie bin from your local council or discounts on your water bill?
For a much more in depth guide than this I'd highly recommend reading the excellent "Making Sense Of It All". This is a publication by Reaching Families, a West Sussex based charity, but most of the content is applicable across the UK. It covers everything from getting your child a diagnosis, right through school years and growing up into adulthood with SEND.
Good luck on your SEND journey and we hope that you find some of this website's content useful.
Contact us at traceyadrianmax@gmail.com
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