Looking after your grandchild may not be an option for all grandparents, so how else can you support your family?
Parents often say they feel devastated when they realise their child has autism and that they grieve for the child they thought they had. Parents can often feel depressed and do not know which way to turn.
It may be that you can support them by becoming their advocate. As well as learning about autism and how best to manage their child, there are other considerations parents need to take into account. They may be entitled to Disability Living Allowance and other benefits, social services may be able to offer respite or a support worker for the family and their child may be able to have extra support at school. There are also a number of courses and support networks available for parents.
Claiming extra support often means spending hours filling in forms, which is often very difficult and draining if you have a child with autism. It may be that you offer to research and help them to apply for benefits and services. Here is a brief outline of some of the more common services available. Call our Autism Helpline for more detailed information.
Disability Living Allowance (DLA) and other benefits
DLA is a non means-tested benefit which is awarded to children and adults under the age of 65 years if they need help with personal care and/or getting around.
DLA has been awarded to people who need extra support with personal care, such as dressing, washing or toileting; those who need watching over day and/or night; and those who need close supervision outside their home.
DLA comes in two parts, the care component and the mobility component. These can be awarded together or separately.
The care component is awarded at three levels: lower rate, middle rate and higher rate. The mobility component is awarded at two levels: the lower rate and the higher rate.
Higher mobility can not be claimed until a child is three years old, and the lower rate can not be claimed until a child is five years old. The care component can be claimed at any age.
DLA claim forms can be obtained by phoning the Benefit Enquiry Line on 0800 88 22 00 or the Disability and Carers Service 0857 123 456. If you get the form from either of these places, it will be date stamped and if you return it within six weeks your claim will be backdated to the date on the form.
Our Autism Helpline has a supporting statement about autism and DLA which you can include with the form. We also have ips for parents who are filling in the form. Visit www.autism.org.uk/dla or call our Helpline to ask for copies.
There are other benefits that your child may be entitled to, such as Carers Allowance or Council Tax Benefit. Call our Autism Helpline for more information.
Ask your son or daughter how much support they want from you with filling out benefits forms. Some grandparents just find out basic information about benefits and pass it on; others help their son or daughter to complete the whole form.
Support from social services
Every child with autism is different and has different needs. There is a range of services that families may be able to access, including respite care, after-school or holiday schemes, and grants for housing adaptations or equipment.
The services are means-tested so the family may have to pay for some of the resources.
To see if your family is entitled to services you, or your son or daughter, will need to write to your grandchild's local social services department. Explain that your grandchild has autism and ask for an assessment. A template letter is available from our Autism Helpline if you would like one.
The Carers (Recognition and Services) Act 1995 and the Carers and Disabled Children Act 2000 require local authorities to assess the needs of carers and, where necessary, to provide services to meet those needs. If you request an assessment for your grandchild you could also request a carers' assessment for your child.
If your family is not entitled to support from social services or you do not wish to take this route, there are a number of charity respite services that may be able to help. See the section 'Charity respite services' below.
Again, the amount of support your son/daughter may need or want from you may vary. Some parents do not want to involve social services at all, so their wishes need to be respected.
Support at school
Some children with autism will go to mainstream schools, perhaps with extra support; others will go to a specialist provision. Our Autism Helpline has an information sheet about choosing a school.
Depending on their needs, your grandchild may access different 'stages' of support at school. These include Early Years/School Action; Early Years/School Action Plus; or the support that come from having a statement of special educational needs. Your grandchild may not need a diagnosis to access some extra support in school. Our Autism Helpline can give you more information about education for children with autism.
Parent support networks
There are support groups for parents across the country: search our Autism Services Directory for groups in your area, or can call the Autism Helpline and we will search for you.
We have a Parent to Parent line where a parent of a child with autism can speak to one of our volunteer parents (who also have a child with autism). tel: 0800 9 520 520.
Our Autism Helpline holds a list of NHS and private counsellors who have knowledge of autismD and can help family members come to terms with a diagnosis or work through behaviour strategies.
The National Autistic Society runs a number of different training courses for parents and carers and the family, such as the help! parent support programme. Telephone our Autism Helpline for more information.