Meeting other parents is where I think we pick up the most useful tips and hints- things we all wish we had magically known from our children's birth, but no-one tells you until now.
I am still new to this world of autism and SEN, paperwork etc etc so am sure I will be missing many many things below too, but here are the most important ones I have learnt about to date:
For example:
I didn't know DLA (disability living allowance) existed. I never knew that you can claim this benefit for children who have any disability, extra care of support needs beyond 'those normally expected for a child the same age'. My son is 11 years old now and when I think back to the financial difficulties I have had over the years because he has been unable to use public transport/eat cheaper foods/access mainstream activities etc I can't help but feel annoyed that I didn't know about it.
Plus- if you are caring for your child (or anyone else for that matter) who claims DLA (or PIP as older teenagers/adults) then you can claim carer's allowance as their full time carer. It won't make you rich, but given the hours you spend caring for your child (I will talk about children even though my husband is registered disabled because this blog is mainly about my children and our lives together with autism) the £62.70 a week is better than nothing.
You do NOT need a diagnosis in order to claim DLA. If you have any appointment letters, letters from other people who can confirm the difficulties that your child has and extra care or support needs they have then that will help your claim. DLA is needs based so make sure you put as much information on your claim form as you can (add additional pages if you need to) and base it all on your worst days. Keeping a diary for a few days before you begin filling in the form will help you immensely. Also, be prepared for completing the claim form to be soul distressingly hard as you fill out around seventy pages with the worst aspects of caring for your child and not mentioning any positives or strengths anywhere. Also, phone up and request a paper copy of the form because this gives you a date for backdating the claim and a date by which you have to return the form- far easier to motivate you this way I found. I found most of the questions seemed to lean towards physical disabilities, so look at the Cerebra guide for advice here http://w3.cerebra.org.uk/help-and-information/guides-for-parents/ Also- DLA is not means tested.
PHOTOCOPY EVERYTHING and keep everything in writing. If you are applying for something, asking for something or complaining about something, keep it in writing. Ask for email addresses, search the internet and social media for email addresses for people with responsibility. I have had to use my paper trail many times to push people to doing their jobs (should not have to, but you do).
CAMHS referrals - your GP (if they are anything like mine) will write as little as possible on their referral, and CAMHS will probably refuse the referral (if they are like CAMHS here), so refer yourself as well. Many councils have the referral forms available online if you search for CAMHS referral and your council area. If not, there is no reason you can't write them a letter detailing the reasons why you want them to see your child- focus on the triad of impairments for autism and either send it recorded delivery or hand deliver it.
Your local council has a local offer (in England). On the council website you can follow the menus/search for local offer, where they have to list all the available services for people with disabilities and additional needs in their local area. There will be useful contact information here for people in all different services, plus you might locate activities for your children if you are lucky.
If your child is in a mainstream school or home educated then you can apply for an EHC assessment (educational health care assessment). As a home educator I have not gone through with an EHC for any of my children purely because of the meddling family support worker we had, but I know of other local home educators who have EHC plans for their children, but the focus seems to be on trying to get those children into a school placement/alternative provision. If you have questions about the EHC process then your go to places are IPSEA (https://www.ipsea.org.uk/) or your local parent partnership (here called sendiass). The latter cannot advise you on what to do for the best and I didn't find them very helpful, but I know plenty of people who sing their praises, but those people know they definately want an EHC. If you are refused an EHC assessment then you can appeal it, and then if you are still refused you can take the local authority to court- called a tribunal- where you prove your child's needs and that a mainstream school and provision would not meet these needs, therefore that the authority needs to help. IPSEA has lots of advice on this and there are also many social media support groups which can offer speedier advice at times, with the usual caution for social media.
It is worth checking out what the local health professionals are commissioned to work on and diagnose. For example, here, CAMHS is commissioned to diagnose ASD but then there is very little follow up support; occupational therapy is not commissioned to assess for sensory needs or sensory profiling and speech and language therapists are only commissioned to work with children with physical difficulties with their speech. This meant that the wait for OT (3 months) and SALT (2 months) was a waste for all my children and they required private assessments.
There are websites that are full of advice, information and signposting for autism (http://www.autism.org.uk/) and PDA (https://www.pdasociety.org.uk/) which also include sections on assessments, diagnoses, symptoms, strategies and more. I recommend joining the autism society and reading their magazines when they arrive (quarterly I think) and using their card when you need to raise awareness that unwarranted advice is not appropriate.
PECS is a communication tool that uses small, simple pictures which you can put on a keyring to help your child communicate their needs. You don't need to pay crazy money for them either- there are many available on auction sites and online. Another similar topic is visual timetables- take a look on twinkl, or http://www.communication4all.co.uk/http/KS2%20Displays.htm amongst many others. They are also available readily on auction sites. We bought a whiteboard for our home and use magnets to stick their timetables up daily so they are easily interchangeable, removable during the day and the children all know where to look for the day.
If you suspect/know your child has autism, seek out an occupational therapist with sensory integration training. I cannot tell you how much of a difference this makes. We used http://www.childrenschoicetherapy.co.uk/ but you may be able to find people closer to you. I know sensory processing needs can seem small when you are in the midst of dealing with meltdowns, avoidance strategies, possibly violence and more, but if you can pinpoint any sensory needs with the help of a full sensory profile, then you can work with your child to reduce their behaviours and sensory meltdowns.
Grants- there are charities out there who offer grants specifically for children/families with disabilities and additional needs. We found that having DLA for three children put us over the income threshold for many of them, which made me question whether they realise why it is that we have DLA for three children and that that means we have three times the outgoings too, but if you search on turn2us, you will find a grants search tool where you can filter results to specific gender/age/needs. The main people we keep hearing about are Merlin's Magic Wand (they offer a day out for children and their families at one of their attractions if you are successful in your application) and Family Fund (we have not had any grant from these either but lots of other families have). There are many costs that families encounter when there are disabilities/additional needs- for example our swimming lessons are £18 a week for two children because they need the one particular teacher and no groups at a quiet time- and the only bike I have ever found that my daughter would consider going near would cost us £650. Items such as night pants at £4 a pack when they are on offer soon add up, dummies and chewy items aren't cheap, keeping the house warm 24/7 costs a small fortune- not to mention the assessments, parking for appointments, treatments, electricity to power their computers which allow them the essential down time to recharge after being around people, costs for the care farm....etc etc.
Young carers- if you have more than one child then young carers can be wonderful. Even though all my children have autism, our eldest daughter is able to cope with young carers because they have befriended her through 1:1 sessions with one particular worker there, so she feels able to access activities there now because she knows that worker. It gives her time to be herself, away from the stresses of living with two siblings with PDA.
Seek out local charities for activities for your children. We moved area last year from an area where there was very little as it was fairly rural, to an urban location. I was determined to find activities the children could access and where they would feel supported as quickly as possible in order to ease the transition of moving (autism, change, moving across the country, scary). Here we have a few charities who run various activities throughout the year for children of specific ages and needs as well as local groups I found through google and social media searches.
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