According to one of Scotland's parent support networks for families with children with autism or autism spectrum disorder (ASD), there are routes to benefits and financial help that some people don't know about.
And for many, the task of applying and understanding what you're entitled to is enough to stop them from applying altogether.
Champions Of Autism Spectrum Together (COAST) are a charity based in South Lanarkshire, who provide support to parents and carers of children and young people who are on the Autism spectrum.
Earlier this year they were awarded Charity Status from the Office of the Scottish Charity Regulator for the work they do and have since put together advice for families accessing benefits for the first time.
According to founding member Carol Ann Dalton, when they welcome new members to the group one of the first things they address is access to welfare support because, with two sons who have ASD, she knows that life will throw many challenges their way.
Maggi Williamson is another member of the group who works part-time as a nurse whilst also caring for her neurotypical (non-autistic) child and son with ASD.
They both said that they have some parents who join the group and don't know about basic benefits they can access and some say they applied years ago but the process was so distressing that they won't do it again.
If these situations apply to you or someone you know, then this advice from expert parents may be of help.
Filling out benefit forms
According to COAST one of the biggest barriers to accessing support for families is stigma.
The primary caregivers are more often than not a parent so it's common for the role of parent to blend into the role of carer, however, this doesn't mean that the needs of neurotypical children compare to those of a child on the spectrum.
Maggi said: “When filling out that DLA form it is so normal for us to underplay what we do because it is so normal for us to provide enhanced care for our children...it is hard to explain that on a form”
Carol Anne said that most parents will put a lot of information in forms but said that adding every single thing isn't always the best approach because it gets overwhelming to read.
Maggi gave these tips:
- Be direct
- Use bullet points for each question
- Try and not get upset
Maggi added: “see the form that we have to fill out, it's very upsetting for us when we have to focus on all of the things our kids are unable to do and it's emotionally draining but we have to do it.”
COAST says the benefits allow them to plan days out with the rest of the family with financial reassurance and said it's there to make a difference in the lives of kids with ASD.
They added that families who don't apply for benefits can see a huge drop in income because one parent has to give up work and this can have any number of negative knock-on effects.
Disability Living Allowance
DLA is the only benefit specifically available to children with autism, however, once DLA is in payment, it may mean that their parent/carer can claim Carer’s Allowance for the care provided to that child.
It may also mean that other means-tested benefits in payment to the parents (such as Child Tax Credit or Housing Benefit) may be increased.
DLA can provide financial help with the extra care and supervision that a child with ASD needs, over and above other children of the same age.
This means that proving your child needs more care and support than another child without ASD is crucial.
Renaissance Legal, who help families access grants said: “Be really descriptive in what you write. Explain exactly what your child needs.
“Put examples of things that have happened when prompting, encouragement or supervision was not available, to show how vital and important that support is.
“Real-life scenarios help the DLA assessor to understand your child and their needs. This is vitally important as the DLA assessor will never meet them.”
Carer’s Allowance
If you are awarded DLA for your child you may also be eligible to claim Carers Allowance for yourself.
This is a benefit that is paid to carers who care for a child who has been awarded DLA at the middle or high rate.
The carers must not be earning over £128 per week and must spend at least 35 hours a week caring.
To make a claim to fill out form DS700.
Maggi says that she works enough shifts as a nurse to claim Carer’s allowance which means she can spend time with her kids while her husband works.
Maggi says: “Financially it helps us a lot and we also get enhanced tax credits, it allows me to spend a lot of time at home with my kids where I am needed but I also maintain a career”
Awareness in schools
Not every child will automatically qualify for access to DLA which leads to an application process that presents many barriers.
According to COAST one of these barriers is the provision of supporting evidence from the likes of schools who have been found to disagree with parents on the level of care needed for a child with ASD.
Carol Ann said that “One parent has been challenging a decision for three years because in the school headteachers opinion the child doesn't have autism and DWP are taking the word of a professional over the word of a parent and Autism diagnosis”
Very often a child will behave differently in school than at home which is called ‘masking’.
Maggie Williamson used the analogy of a coke bottle being shaken up to explain to her school what ‘masking’ is and said that when asking a school for help with applications it can be useful to use.
She said: “Kids will often mask in school because they want to blend in with every other child so they might hold in all of their anxieties...so it's like a cola bottle effect”
Maggie continued: “On the trip to school they are anxious so we are shaking the cola bottle a wee bit and then they are maybe asked certain questions in class that puts them on the spot, and that shakes it a little bit more.
“Playtimes are unstructured when our kids prefer structured time and other kids are unpredictable to them so that's another reason to make them anxious”
“So by the end of the day, if you imagine that cola bottle has been shaken a little bit all day, as soon as they get into their safe space that bottle explodes”.
Maggi says that for her it's in the car but for other parents, it could be when they arrive home.
Both Maggi and Carol Anne say they work with schools and parents to try and make sure that this difference in presentation is understood.
Carol Anne said that schools can also help with ‘de-escalation’ tactics so that any anxious or stressed behaviour is minimised.
Changes in Care Needs
After your child is diagnosed they are discharged and this formal diagnosis is never updated despite changes in needs that the mums from COAST say are inevitable as the child grows up.
Carol Anne said that as a child ages “they might get better at one thing but then they get worse at another” and it changes the type and amount of care they need.
Accessing benefits earlier on means that if you encounter more challenging behaviour you will already have the experience to apply for benefits and you won't be so financially pressured.
Family Funds
Maggi said that another route to get help with money is the Family Fund and said that she has been able to claim grant money for toys at home, days out and garden equipment.
All of which improve the lives of families like hers.
The family fund said: “In 2019/20 we helped 6,324 families with grants across Scotland.
“This meant that a wide range of thousands of essential items were awarded to families, including computers, tablets, kitchen appliances and much-needed family breaks.
“We receive funding from the Scottish Government."
Take a Break
The parents of neuro-typical children are able to take breaks and leave their kids with family or childminders but this isn't always possible if your child has special needs- this fund could be an option for you.
Take a Break is part of the Family Fund and is a short break fund for the carers of disabled children, young people and their families in Scotland.
This could be a funding option for families who have Autistic children to care for but find their finances to be a barrier when thinking of taking a well-earned break.
They said: "In 2019/20, we provided 2,156 grants that gave carers and their families the choice and opportunity to access a single or ongoing break from caring.
"Take a Break grants to enable those caring for a disabled or seriously ill child or young person to have the opportunity to choose how they would like to take a break, with a view to improving the quality of life, health and wellbeing of the whole family."
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