HOW do you judge the impact of disability for an adult versus disability for a child? How do you judge between different conditions such as learning disability, physical disability, medical condition or sensory impairment? We hear a lot of criticism of welfare reform but in one respect there has been an improvement and this is in the modern assessment of Autistic Spectrum Disorder (ASD).
Amongst the families that we support at Kindred, ASD is certainly the most frequent diagnostic label. As the rate of diagnosis of ASD in children and adults has been increasing we will see higher proportions of adults with a diagnosis of ASD in years to come.
In these times of economic downturn, we have noticed a stricter criteria for applications for disability living allowance (DLA) for children with disabilities.
I would argue, however, that personal independence payments (PIP) for over 16s is clearly a better assessment tool for ASD, especially when it comes to mobility.
There will be children who do not qualify for the higher rate of DLA (mobility component) who do qualify for the higher rate of mobility for PIP after their 16th birthday. This is significant as the higher rate of mobility (DLA or PIP) is one of the ways in which you can automatically qualify for a Blue Badge, allowing the use of a disabled parking space and free on-street parking.
You may ask what real difference can easier or cheaper parking make to a family? Caring for a person with challenging behaviour is extremely wearing, even more so if they can run fast and have no sense of danger.
But despite much publicity there is still a lack of public sympathy towards parents of children with ASD. Getting a Blue Badge restores some of the “normal” to family life and has been very much in the public spotlight due to a recent petition to the Scottish Parliament.
In my view, families of children with autism should not have to qualify for high rate mobility (DLA or PIP) to get a Blue Badge. We need to review the threshold and criteria for qualifying for a Blue Badge. At a time of recession, the awarding of a Blue Badge can make a hugely positive difference to families whilst costing the taxpayer virtually nothing.
Over the last 15 years there has been a dramatic improvement in the understanding and diagnosis of ASD.
This probably lies behind the modernising of benefits including PIP. Of course, the improvement in services for families lags behind. I spoke to a family last week who are in desperate need of support and they have been told they will need to wait until May 2016 for an assessment. Without an assessment there is no diagnosis, and without a diagnosis there are few services.
We have been very fortunate at Kindred to benefit from some statistical support from Scottish Government. A few months ago we looked at some test data from our database of families. The first thing that we could see is that parents of children with ASD feel extremely isolated. In many ways, these families benefit from the support provided by our service.
Why do parents of children with ASD feel isolated? On our Helpline, parents tell us repeatedly that they have become cut off from their friends and family. This is because the friends and family blame the parents themselves for the child’s behaviour. Living day in day out with their child, the parent or parents come to see that the child is not being naughty. “Meltdowns” are triggered by stressful situations such as shopping or interacting with other children. Gradually, the parents stop joining in anything that that can trigger a meltdown. Isolation creeps up insidiously from losing contact with friends, to becoming cut off from the community whilst resorting to the comparative safety of online shopping.
Parking up right next to the shop door can make that dreaded shopping trip just manageable. If you have a child with ASD, you will know that any trip out has to be planned with an ‘exit strategy’. Meeting up with a friend and their kids is that much more possible if you know you can jump in the car and be home soon if something unexpected happens and your child becomes distressed.
With a Blue Badge, at least you don’t have to walk for miles dragging a screaming, hyperventilating child to the wonder of passers-by. Not to mention wasting the £5 for parking, or missing out on a day out with the family.
• Sophie Pilgrim is director of Kindred, member of the Scottish Children’s Services Coalition