DLA has been a lifeline in my house

Parent carer Sarah talks about the life-changing difference claiming Disability Living Allowance made to her family.

My journey as a parent carer is not only about my child and their diagnosis, it's also a journey through the benefits system.

After my child was diagnosed with a rare life threatening condition which involved a long hospital stay of many weeks, I had to give up work. Not only was I having to cope with a child with new complex needs I was also having to work out how we were going to survive, how we were going to eat, even.

Not all parents' introduction to benefits is as immediate or dramatic and many parents do not claim Disability Living Allowance (DLA) despite eligibility.

In the current climate of the perception of disabled people and their carers abusing the benefits system, many parents do not discuss or find the discussion around this topic uncomfortable. Who wants to be seen as a scrounger? Further claiming DLA is complex and often local benefit support agencies do not have the experience or know how to support DLA applications.

Why claim DLA?

30% of households with a disabled child live in poverty and many more will be not far from this. DLA is there to offset the financial cost of caring for a disabled child.

DLA has been a life line in my household, enabling me to buy extra bedding, such as mattress protectors and seat protectors - not to mention the extra washing! Then there is clothing; my child has issues with fasteners and with getting some clothing off and on so the choice of clothing has to be thought out carefully and then the lifetime of clothing can be much shorter.

Wear and tear on the house is another worry with a child who is regularly expressive with any pen, pencil or crayon or object - well beyond their toddler years. Then there is the significant drop in income from being a parent who worked to a parent whose capacity to work is severely limited - attending a meeting or medical appointment can take up a whole day not to mention the fuel costs, this all adds up for families.

DLA is the passport benefit

DLA is also a passport benefit which allows families to access other means of support such as The Family Fund as well as whole host of schemes to enable access for disabled children and their carers, such as CEA Cinema Card and discount rail card. The mobility element can also enable access to local disabled parking schemes and of course the Blue Badge which is accessed differently for children than adults as well as the Motability car scheme.

Importantly DLA can also passport families to higher rates of Child Tax Credits and may make you eligible for Carers Allowance and help with Council Tax.

DLA is also non-means tested, so it doesn't matter what your income is, you are still eligible to apply. The criteria is the disability and the level of care, not your income.

How to claim DLA

Contact is a great place to start, they produce a guide specifically for children with Learning Difficulties or Autistic spectrum diagnoses, however charities that focus on your child's diagnosis or condition may have support workers in your area who specialise in DLA applications and online guides to applying.

One of the best guides available for children with brain conditions is the Cerebra guide, which helped my child get DLA. Some areas may have specific child disability services attached to Citizen Advice Bureau such as this service in Devon.

Many parents need some sort of support when applying as DLA is so complex and requires significant medical evidence to support the application and it is emotionally very hard work. Getting the right support can mean the difference between a successful application and an unsuccessful one, if you have been refused DLA in the past this may be the reason why. 

DLA allows my child and I to have quality of life

For me, access to these benefits have been literally the difference between starving and surviving. I am not well off by any standard and money is a constant worry. Applying for DLA is hard, nothing like the way it is portrayed in the media, but it allows my child and I to survive and have some quality of life.

If you want to know whether your child is eligible for DLA, visit our DLA webpage or dowload our guide  Claiming disability living allowance (DLA) for children [PDF].

You can also arrange for a benefits check with one of our advisers - get in touch with our free helpline today.

Written by Sarah at 14:24