These are some essential starting points we feel are helpful for parents with newly diagnosed children or who are waiting on an assessment.
It is overwhelming, confusing and terrifying at the beginning of this journey but you will learn, you will cope and there are people here to help you. There is a whole new language and terminology to learn and many new roles and agencies to interact with.
This section aims to highlight some key issues which are very relevant at the beginning of your journey.
First of all there will be lot of paperwork and application forms. These always look much more difficult than they are. The best way to approach this is to be organised. This will help you feel less stressed and overwhelmed. Initially there can be a lot of form-filling and applications but this reduces over time.
Coming to Terms with a diagnosis
A diagnosis can be a positive turning point in a child’s life as it can lead to funding and interventions that help both the child and their family. It can lead to specialist care and most importantly it can lead to greater understanding and inclusion. Find out advice about coming to terms with a diagnosis here.
- Get a few lever arch files & dividers.
- Keep a copy of everything you send out in the file.
- Have a control sheet at the front of the file recording who you rang, what they said and when you said you will ring back.
- Be polite but persistent when following up appointments and assessments.
- Even if a form looks terrifying the best thing to do is to get started, complete the name, address etc sections ie write what you know straight away and generally you have a quarter of it done by the time all that is completed. Then keep working through it.
- Ask for help – please contact us for help. There are also a lot of very helpful parent support groups on Facebook. There is a very strong history of parents supporting other parents so never be afraid to ask a question or ask for help and support.
If you are concerned at all about your child ask for an Assessment of Need. Legally this should be completed and reports finished and given to you, six months after the date of your application. More detail about the assessment process here.
You need to find a school place yourself for your child. The assessment may indicate which type of school placement will best suit your child but you have to contact schools and find the place yourself. You should also ensure that you make contact with your local SENO. The SENO will give you the list of schools with Autism Classes but they will not place your child in the class – you have to approach schools directly. It is important that the SENO knows about your child and what type of place they need as if there are not sufficient places available the SENO is responsible for ensuring more schools open ASD Classes. Click here for more info.
Benefits and Entitlements
There are a number of benefits and entitlements you may be entitled to and these are detailed here. But we would bring your attention to the following two:
- DCA – Domiciliary Care allowance is a monthly payment made to parents of children with a substantial care need over and above that of a child of the same age. You do not have to have a diagnosis to apply for DCA as it is based on care needs. Click Here for more info.
- Carers Leave/Carers Benefit. This is relevant to people who are currently working and need to take sometime off to care for someone who needs care. This period of Carers Leave can be up to two years and your job is held open for you (similar to maternity leave) . During this time you can apply for Carers Benefit which is a weekly payment. Carers Benefit is not means tested. Click here for more info.
Carers Benefit is a particularly useful payment as you may be contemplating having to give up work to look after your newly diagnosed child or person with care needs. At the beginning there can be a lot of assessments and appointments. But if you are able to take some time off from work at this stage in a years’ or two years’ time you might be in a position to return to work.
If you are not sure where to start, and are worried, we can help here.