After our meeting in June where J was diagnosed with Social Communication difficulties we were advised to claim for DLA. I was torn about whether I should claim as I never really saw J as ‘disabled’. But when I spoke to our specialist team they all said that I had to think about all the extra things I do and cost we incur that is beyond that of a ‘typically developing’ family.
I realised that actually I do spend a small fortune buying makaton and PECs resources, I buy apps and resources to develop his play skills and speech and I have to have so much time off for appointments which can then cost extra petrol money. Not to mention the cost of his Opportunity Group, amount spent on sensory based equipment for day to day life etc.
I have never claimed benefits before. I’ve worked since I was 14 and have never been without a job. Between myself and my husband we were never entitled to any tax credits. I am a believer that if you are genuinely entitled to benefits then claim them! They are there to help (obviously there are those who work the system but that’s a different conversation). But I still felt a sense of guilt for claiming. However, I was being made redundant.
I am lucky to have worked for the family business since I was 18. My job role and having an understanding employer and staff team/friends meant that I could rearrange shifts and have time off fairly easily to attend all of J’s appointments and therapies. I could take him to gymnastics every week so he could have a safe space for his physical outlet. Then we had to close due to declining family health. I couldn’t take over the business as I had J and no spare time for that role. This meant that for the first time I was becoming unemployed.
I was worried that I wouldn’t find a job that would let me have time off for appointments and therapies. For example in October we have appointments with Specialist Nursery Nurse, Speech and Language Therapist, Paediatrician and the additional needs children’s dentist. Not to mention that we are looking for a new preschool for J which will require extra visits and meetings with the key worker, managers, SENDCO to make sure everything is in place for him.
How many employers will allow time off for this? My husband works full time and his days off change each week so can’t always rely on him to be off for particular days. So having DLA and other benefits means that I can have some time off to get J sorted and then look for something part time which I can work around J.
Advice for filling in the giant form:
The form covered everything from sleep and night routines to how many minutes personal care (above the needs of their peers) a days it covers education, speech, visual and hearing needs etc. There is a mobility section but this wasn’t applicable for J.
Our specialist health visitor came over once it arrived to go through it with me.
I asked all our therapists/specialists for advice on what they feel J’s main needs and strategies are. This was things like lack of functional speech, adapted routine and use of lots of visuals, his lack of danger awareness and need for things like extra harness for the car seat.
The best advice I can give you is to make a bullet point list on a bit of paper outlining every tiny thing you do everyday and see it as ‘worst day ever’ scenario. Think about what will happen if you don’t stick to routine, don’t use your strategies such as visuals or Makaton, if child is sensory seeking or risks during a meltdown. Chances are if you are claiming DLA then you have already learnt strategies to cope but you have to think about what life would be like for you and your child without those in place.
Keep a diary
For a few days keep a track of how long it takes to do things on both good days and bad days. The form will ask for you for details such as how many minutes and how many times a day your child needs help. I don’t tend to time J in every life…who does? So spend a few days whilst waiting for forms to just track everything from brushing teeth, to get dressing, eating to getting out the house!
Find as many reports as you can. Go right back to the beginning when you first had the ‘inklings’ something wasn’t as it should be. You’ll need dates of tests and assessments and meetings (inc hearing tests, speech assessments, GP appointments). I rang various clinics and ask them to check records for me and had letters reissued. You won’t need to send them all off but it’s handy to have the info available. We sent J’s reports from paediatrician, preschool and opportunity group as well as last IEP.
Well, the good news is that J’s claim was accepted (we applied in July and received our letter last week so end of September). We even got our claim backdated which was VERY helpful. I used the backdated money to buy new sensory resources, Makaton dvds and PECS resources (we need more inserts for our book and a travel set). It will also pay for his gymnastics for the rest of the term. From now the money will come to me monthly and will cover day to day expenses of having a child with additional needs.
This plus the tax credit system means I can now be here for J full time. I can do more of his therapy activities, take him to places ‘off peak’ so he can go swimming or to soft play without the sensory overload and I have time to do more homemade meals and baking in an attempt to help J with his food needs. I do plan to go back to work in the not distant future but now I can find a job with hours that suit J and it will only need to be part time.
I’m determined to make the most of this opportunity to be able to do everything I can to give J that boost. It’s a weight off my mind knowing that I can financially do this. Don’t get me wrong the money isn’t enough to retire on so I will still need to be frugal and penny pinch but it means we can live and give J opportunities he needs.
Do you have any advice on DLA forms or other helpful benefits? Or do you have a question about the process? Give us a like or a comment ❤️