Types of support for parents and carers of children and young people with a learning disability
Short breaks
The term ‘short breaks’ (also known as
respite
Respite is when a person goes somewhere for a few hours or days to have a break. People with a learning disability can have respite from their carers and family, and carers and family can have respite from the people they care for.
) is used to describe the time off that family carers and people with a
learning disability
A learning disability is to do with the way someone's brain works. It makes it harder for someone to learn, understand or do things.
can get.
These breaks come in different forms. Some families go to short breaks centres, others are part of schemes involving placements with families, or receive
direct payments
Direct payments are when the money for your care and support, or benefits, is paid to you.
to purchase their own support.
Councils must publish a list of all children’s short breaks in their area and make sure there is a wide range of short break options available locally.
They must also bear in mind that some short breaks might need to be provided to parents proactively, in order to help them to continue to provide care for their child.
Read our resource about short breaks entitlement for children.
Financial support
There are several benefits for children who need additional support. From the birth of a child with a disability, parents can claim various benefits. These include:
- Carer’s Allowance – this is a benefit for carers aged 16 and over who regularly spend at least 35 hours a week caring for a disabled person. Claimants can receive £66.15 per week.
- Child Benefit – this is paid to carers who are responsible for a dependent child, children or young person.
- Universal Credit – this is benefit replaced a number of existing benefits, including child
tax
Tax is the money that pays for things like schools, hospitals and the police. There are different types of taxes like income tax, VAT and council tax.
credit, housing benefit,
certain
Certain means you are sure about something.
out-of-work benefits, and working tax credit. - Child Tax Credit and Working Tax Credit – these benefits have been replaced by Universal Credit for most people. You can only make a new claim for Working Tax Credit if you get the severe disability premium. Visit GOV.uk for more detailed information on tax credits.
- Disability Living Allowance (DLA) – this is available to disabled children. The care component of DLA is available from birth, while the mobility component of DLA is available for children from the age of three.
For more information about these and other benefits, including how to claim them, please visit our benefits pages. For a full list of benefits you may be entitled to if you have a child, please visit the Disability Rights UK website.
Family Fund is able to help in some instances by providing grants and information relating to the care of a child. Grants can be obtained for help with items such as washing machines, holidays,
leisure
Leisure is when you have time to do things you enjoy like playing sports or going to the pub.
activities, driving lessons, bedding, and clothing.
Family Support Programmes
Some families may feel they require some extra support to help them meet the needs of their child.
There are a number of different family support programmes available. Some are for all parents regardless of whether they have a disabled child, and some are more targeted towards meeting particular needs.
Family support programmes can be delivered by a range of providers: some are offered by a council, while some might be delivered by other organisations Organisations are groups like companies and businesses. .
For an idea about what support your council can offer you, visit your council’s
website
A website is a page you can go to on the internet like Google or YouTube.
. Find your local council.
A few examples of family support programmes that are targeted at families of disabled children are:
- Early Bird (for children with
autism
Autism is a disability. Autistic people find it difficult to understand what other people think and feel. They also find it difficult to tell people what they think and feel. Everyone with autism is different.
) - Triple P (Positive Parenting Programme)
- Incredible Years Parenting Programme.
Each programme has different eligibility criteria and not all of these options may be available to you in your local area.
Information and advice services for parents and carers of children and young people with a learning disability
There is a lot of information available to help parents understand more about what support their child can get.
Some main sources include:
The ‘Local Offer’
Every council must have a Local Offer of support it expects to be available in the local area for children and young people with SEND. The Local Offer will be available on the council’s website – if you are unsure, you can find your local council.
The Local Offer should have information about the following types of support for children and young people with SEND:
- Education Education is when you learn things. When you fill in a form to get a job, education means you write where you went to school, college or university. support, including nurseries, schools and colleges.
- Health support, including therapies available to children or young people.
-
Social care
Social care means the services that give care and support to people who need it.
support, including short breaks. - Support to help young people to live independently.
- Support to help young people to find
employment
Employment means having a job.
opportunities. - Support to help young people find suitable accommodation.
All councils must provide the opportunity for you to give feedback about your local offer, and they must publish how they intend to address any issues you raise.
Information, Advice and Support Services (IASS)
Every council must also provide an independent Information, Advice and Support Service A service gives people what they need, like healthcare services that help people when they are ill, and support services that give people support. . The support service A service gives people what they need, like healthcare services that help people when they are ill, and support services that give people support. is available for children and young people with SEND and their parents.
The IASS will provide information on things like:
- local policies and practice around SEND
- the
law
Laws are the rules that everyone in the country has to follow. If you don't follow the rules you can get in trouble with the police.
on SEND - the Local Offer
- personal budgets
- other sources of support.
The IASS will also provide support for children, young people and families, including:
-
advocacy
Advocacy is when you get support to have your say.
- key working
- help to
complain
Complain is when you say you are not happy about something.
if something goes wrong - Independent Supporters who can support families and young people with SEND to get an Education, Health and Care Plan.
Family Information Services
Your local Family Information Service (FIS) provides a range of information on all services available to parents, including parents of children with a learning disability.
To find your local FIS, search on the Family and Childcare Trust’s website.
Other support organisations
- Contact: contact.org.uk
- Information, Advice and Support Network: https://www.cyp.iassnetwork.org.uk
- National Network of Parent Carer Forums: www.nnpcf.org.uk
- IPSEA: www.ipsea.org.uk
- Disability Rights Rights are the things everyone should be allowed to do like have a say, or go to school. UK: www.disabilityrightsuk.org
Join our online community
Connect with others going through similar experiences to you.
Mencap’s online community A community is the people and places in an area. is a safe and supportive place to meet others, ask questions about learning disability, share experiences and offer support.
The Learning Disability Helpline
Our free helpline service offers advice and support for people with a learning disability, and their families and carers.
The creation of this page was funded by The National Lottery Community Fund.