The pressures of supporting a child with a learning disability or physical or sensory impairment can be hard to manage. These family monsters can often build and become overwhelming. Many parents struggle to know what support is available for their child and find it hard to meet people with similar experiences. These challenges can be made particularly difficult when trying to manage other family monsters too. We have put together the information below to help parents understand what support is available for the whole family and how to access it.
A good starting place is your local authority’s Local Offer, an information service for parents caring for children with special educational needs or a disability. The Children and Families Act 2014 states that every local authority should have one and that it should be kept up-to-date and publish parents’ comments as to how useful it is.
The Local Offer should have a directory website covering a range of important information for your area including:
An EHC needs assessment looks at whether a child needs an Education, Health and Care (EHC) Plan. An EHC Plan is for children and young people aged up to 25 who need more support than is otherwise available. The plans identify the educational, health and care needs and if needed specifies what additional support should be put in place.
You may have heard of a ‘statement of special educational needs’ sometimes referred to as ‘a statement’; this has been replaced by the EHC Plan.
Only a small number of young people receive an EHC Plan. You, the young person (if aged over 16 and under 25 years old) or any professional such as doctors, teachers or even friends and family can request an assessment.
If your child is given an EHC Plan then you might be entitled to a ‘Personal Budget’ to help you to get the support you need.
A Personal Budget is essentially an agreement to give you money to spend on support for your child. They can take the form of direct payments into your bank account so you can buy and manage services yourself or an agreement for someone else to manage it on your behalf – this could be a school, the local authority or even a family member or friend.
If you need further information and guidance you can contact your local Information, Advice and Support Services (IASS). They are able to give free, accurate and impartial information to parents, carers and children and young people with special educational needs and disabilities.
IASS was previously called PPS (Parent Partnership Services) but was renamed in the Children and Families Act 2014.
The scope of the information they cover is huge but includes:
Details about how to contact your local IASS can be found in your Local Offer but the Council for Disabled Children have a useful tool on their website here.
Sometimes even impartial advice from professionals doesn’t help with our need to share lived experiences, let off steam and shared our experience of seeking support.
Parent Carer Forums (PCF) are groups of parents and carers of disabled children. They work with all the people in the lives of children with disabilities and additional needs – like local authorities and health providers – to ensure services meet their needs.
They don’t advocate for individual families but instead try to improve the wider picture and situation for all families. PCFs tend to attract invested, knowledgeable parents and carers and can be a great way to meet others who are in similar situations.
Support can come in many forms and often the best way to find somebody to talk to is to visit disability service provisions in your area. Your Local Offer should include listings of sport and leisure activities in your area as well as local support groups, coffee mornings and drop-in sessions.
In some cases you may not know much about the disability your child has. It can be an overwhelming time but you can learn more about their conditions and the specific support that is available by contacting the main charity relating to your child’s condition. The charity Scope publishes a comprehensive list of these here.
Our free FamilyLine helpline is here to provide a listening ear, answer those particular parenting questions you have or help with guidance around more complex issues. All via telephone, text message or email for free.
Monday to Friday 9am-3pm and 6pm-9pm
Telephone: 0808 802 6666
Text message: 07537 404 282
Do you need FamilyLine but it’s out of our operation hours? You can either call back in our opening hours or if you’re in need now then you can contact our crisis line to get in touch with a trained professional.
Text FAMILYACTION to 85258
Our crisis messenger text service provides free, 24/7 crisis support across the UK. We know that getting the correct support at the correct time is so beneficial which is why we’ve introduced our crisis line. This service is delivered in partnership with Shout.
Join the conversation on social media and share your family monsters using
#MyFamilyMonsters. Let’s face our monsters together.