According to advice on the Contact For Families With Disabled Children website, “the law says that councils must assess every child who is or may be a child ‘in need’. Children are ‘in need’ if they need help from the council with their health or development or if they are ‘disabled’. Carers who are the family or friends of disabled children are also entitled to an assessment, either as a separate assessment or addressed through the disabled child’s assessment.”
Child ‘in need’ assessment
You can ask your child’s paediatrician to contact Social Care to request a Child ‘in need’ (CiN) assessment or request one yourself using the template letter from the Contact website.
A family and carer’s needs assessment
You should also request a family and carer’s assessment for you and your family. This should be done at the same time as the Child ‘in need’ assessment. Often the Child ‘in need’ assessment request triggers the Family and Carers Assessment.
Challenging a refusal to assess your disabled child for care and support services
Here is the template letter to send back to your local authority if you have been refused an assessment.
However, it can also help to get support from professionals. Ask your child’s paediatrician and the School SENCO or Early Support Worker to contact social care with their comments and concerns. School might, for example, want to mention that your child is becoming increasingly complex behaviourally and medically and that the level of caring required is beyond any parent’s ability to cope without respite.
The Consultant Paediatrician will comment on your child’s medical condition in detail but perhaps more importantly on how she feels you are coping as a family. This is where you need to have an honest chat with your child’s paediatrician telling him/her that you feel your family are in crisis and that you are mentally and physically exhausted and need a break – if it is the truth, they need to hear it. It is no good putting on a brave face and appear to be coping – this will only lead to not getting the support you may need.
What Children’s Social Care fail to tell you is that when it comes to the assessment process, yes, they are assessing your child and their condition (the ‘Child in need’ Assessment), but they are also assessing the family’s ability to cope and support your child (the Family and Carer’s Needs Assessment). And the latter assessment is the most important element because if you are struggling to support your child then ultimately social care will have to do so, and paying for a residential placement is extremely costly for the local council and they will do everything in their power to avoid this. So don’t worry that Social Care will take your child away if you say you aren’t coping very well – they would much rather try to support you than take on a big financial burden for themselves.
It is okay to say you are finding it extremely difficult, are struggling to complete daily household chores and your relationship with your partner is at breaking point. Also mention that your other children are not getting the support and attention they need from their mum and dad and you are not getting any time for yourself and, as a result, your mental health is suffering. You should also mention if your caring role is having an impact on your employment.
An important sentence to use is: “What I am doing is not sustainable in the long term.”
During Covid lockdown, we wrote an email to our social worker Jim, saying we were “in crisis and we were struggling to cope”. Jim was on our doorstep (in a mask of course!) within the hour. Yes, we were fortunate to be assigned a great social worker who completely understood our son’s condition and how it impacted upon us – but many other families aren’t as fortunate, so you need to be well informed about the law and what is available to you.
One last thing to say, if you need an assessment by social care…don’t do what I did when my son was aged four and having hundreds of different types of seizures a day and we were about to put him on a ketogenic diet. In those days keto diets involved a lot of weighing, calculating ratios of protein, carbs and fat, and then batch cooking. It was an intensive process, and my husband was at work all day and I was all on my own with my son watching seizure after seizure and doing my best to keep him safe and myself sane. I was already exhausted, stressed, depressed and at the absolute end of being able to cope, yet I needed an assessment so that I could receive a couple of hours respite a week for someone to sit with my son and keep him safe whilst I made up these meals.
On the morning of the home assessment, I got up really early and cleaned and tidied the house before they arrived. I even spent some time explaining what safety measures we had in place to protect my son during his seizures whilst they checked every room. I gave a false impression of coping in order to impress them.
The assessment came back as ‘low risk -no help required’, which baffled me as my son’s seizures were life-threatening. Then all of a sudden it dawned on us that it wasn’t him who was regarded as ‘low risk’ but us.
Now, I am not suggesting that you leave used syringes and empty beer bottles around the house, but don’t do what I did and clear up in order to make a good impression. Show them the truth, let them see what you are really going through: the confusion, the devastation, the dirty dishes in the sink, the unmade beds, toys spread around everywhere. Tell them you aren’t coping, your mental health is suffering, your other children need more support from their parents but your CHD2-er requires your full support to keep them safe from seizures. Then tell them that if this continues you fear that your caring role won’t be sustainable in the long term. Better still tell them that you and your family are ‘in crisis’ and need immediate help.
This won’t reflect negatively on you, it indicates that you are good parents doing the best you possibly can despite the emotional trauma and devastation, but you are no longer able to cope. Be honest.
They are not going to take your child away from you. Their remit is to keep the child with the family because it is extremely costly to do otherwise. It is much cheaper to support the family in the home to continue their caring duties.
I was speaking to my son’s adult Speech and Language Therapist (SaLT) a few months ago and it reminded me of the day when he was 17 and the head teacher at his old school told me he was the most complex child she had come across in 20 years as a SEN headteacher. The comment hit me like a ton of bricks…why had no one ever told me this before?! I had accepted the absolute minimum of respite care for the first 14 years thinking ‘everyone goes through this’. Well, let me tell you – they don’t !!!
The SaLT made a similar comment to that of the headteacher explaining that my son’s complexity was the reason why we now had such comprehensive respite support.
Don’t short change yourself and accept the lowest level of support possible, aim high, our children are complex, challenging and also have severe uncontrollable epilepsy. You are not one of the many parents dealing with a SEN child, you are an outlier, and on some days we merely exist in order to keep our children safe.
Direct social care to our CHD2 webpage, which is overseen by Dr Rhys Thomas, our medical advisor and Lead Consultant Neurologist – who is the leading specialist in CHD2 related conditions in this country. Social care have no idea what a CHD2 related condition involves and our website will inform them.
Finally remind yourself you are amazing, strong and resilient, you’ve had no choice but to be so, but also tell yourself you deserve so much more support than you are currently getting, and then get ready to fight for it.
We are here to help you.
For more information
Contact for families with disabled children
Cerebra have very useful information guides on social care:
Luke Clements is a legal specialist and gives advice via his website:
Luke Clements – Social and health care rights
Coram Child Law Advice:
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