Children and young people
Learning disabilities affect an estimated 286,000 under-18s (180,000 boys, 106,000 girls) in the UK.
They can vary from what are considered ‘mild’ learning disabilities to more complex learning disabilities.
Finding out that a child has a learning disability is likely to be a significant turning point in a family’s life, triggering the necessary engagement with a new, challenging, and possibly unexpected world. It can take some adjusting to for all the family, in both practical and emotional terms.
Some children are born with learning disabilities, whereas others develop them due to illness or accidents during early childhood. Symptoms are not always easily apparent in early life, and it can sometimes take a long time before a child is diagnosed with a learning disability. The family GP is the best person to support families in getting a diagnosis for their child.
Families with a disabled child are very likely to be living below the poverty line, may well have to fight to get support or services for their child, and may be isolated socially due to the demands of caring for their child.
Understanding the support on offer is one of the most helpful processes in taking control of the situation. For the families of a child with learning disabilities, there may be a lot of new issues to think about. These may include the following:
Activities and support available in the local area
Finding a range of activities and support available in the local area can provide some valuable resources.
For parents, each area has a parent partnership or forum which provides this information, and there may also be local carers groups and charities that can also provide such information and support. The child may be able to develop a circle of support, or be supported to connect with their community in a variety of ways.
With regard to practical support, the local authority will be able to inform whether children and families are eligible for funding for short-term breaks, or any adaptations to the family home.
The government is in the process of transforming the system for children and young people with special educational needs (SEN), including those who are disabled, so that services consistently support the best outcomes for them.
These changes are covered in the new Children & Families Bill (which will be in use by September 2014) will extend the current Special Educational Needs system from birth to 25, giving children, young people and their parents greater control and choice in decisions, ensuring needs are properly met.
The changes include:
- Replacing the current Statementing system with a new education, health and care plan for children. Those young people with more complex needs will have the legal protection of an education health and care plan extended until they are 25 years old as long as they remain in education.
- Offering families personal budgets.
- Improving cooperation between all the services that support children and their families, in particular requiring local authorities and health authorities to work together.
- Considering the views of parents and carers and young people themselves and putting them at the heart of cooperation between services.
All local authorities will have to set out a local offer for families of children with any additional SEN or disability. This will most likely be a comprehensive website for each local authority where everything you need to know or want to find out about will be in one place.
There are various pre-school, primary, and secondary options for young people with learning disabilities. When considering what will be the best choice for a child, Mencap’s Choosing a school guide can be a useful place to start, along with talking to your child’s Portage worker, early years or school teacher or educational psychologist.
It is important to be aware of the benefits available. These may include Disability Living Allowance (from the age of 16 people instead claim the new Personal Independence Payment), carers allowance, The Family Fund, personal budgets, and direct payments. Contact a Family can offer more information on this.
Transition from child to adult services
Moving into adulthood can be a challenging time involving a great deal of change and it can be particularly difficult for young people with learning disabilities. Under-18s are provided for by Children and Adolescent Social Services, and upon turning 18 will transfer to Adult Social Services if they fit the criteria for care support.
This period of transfer is often called ‘transition’. If a young person has a statement of special educational needs (SEN), their school is required by law to carry out a formal transition process, designed to help the young person and their family to plan for the future. A transition plan will be drawn up during this process, based on the young person’s ideas and hopes for the future.
The fact that child and adult Social Services are not always connected can at times result in delays in funding during the transition from the former to the latter. This process is worth paying attention to.
For further information, please see our information for teachers and transition section on our website for more information.