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Caring for a disabled child with special needs

This page looks at issues affecting people who care for children with disabilities, including getting help from social work and other sources, contacting other parents with disabled children, and getting financial support through child disability benefit.

How can I learn more about my child's condition?

If your child is diagnosed with a disability, medical condition or some other type of special needs, you may find it helpful to learn more about their condition. The Patient UK website is a useful starting point for this, while the Contact A Family website has a comprehensive directory of specific conditions and rare disorders. However, be wary of scaring yourself by reading too much information. It's usually best to talk to your doctor or paediatrician (specialist children's doctor), who has examined your child and can tell you how serious their condition is and how it is likely to affect them in the future.

Where can I get help and support?

The page on being a carer looks at how you can get help from social work, your doctor and health visitor, your local carers' centre and other voluntary organisations. All these services are available to the parents of disabled children. There may also be a support group in your area for parents of disabled children - social work should be able to put you in touch with a group that meets your needs, or you can check your council's website. You might also be able to find out about support groups and organisations from leaflets in your local GP surgery.

What help can I get from social work?

Children's care assessments

The social work department has a duty to assess your child's needs and identify any services or special equipment they need. For example, they may recommend:

  • adaptations to make your home more suitable for your child
  • special aids and equipment to help your child get about
  • occupational therapy to help your child develop skills
  • language and communication therapy
  • services providing specialised childcare.

They should then draw up a care plan, showing how these needs will be met. The services may be provided by the council, or by local voluntary agencies. You may have to pay for some of these services - read the page on paying for care services to find out more.

Contact A Family has more detailed information on children's care assessments available on its website, including what to do if you're not happy with the way your case is handled.

Carer's assessments

You are also entitled to an assessment of your needs, to see if there is anything that can be done to make your role as a parent easier. You can find out more about carer's assessments.

How can I get in touch with other parents with disabled children?

Talking to other parents who are in the same situation as you can be really helpful, particularly if your child is diagnosed with a rare or serious disorder. Contact A Family is a charity providing advice, information and support to the parents of all disabled children, no matter what their health condition. Visit their website to get in touch with other families with disabled children, or for advice on starting up your own parents' group.

You can also get in touch with other families through websites set up to support people with specific disabilities and illnesses and their carers, such as Scope (cerebral palsy), the Cystic Fibrosis Trust or the Learning Disabilities' Choice forum.

How can I get a break?

Spending some time apart is good for both you and your child. It gives you a chance to recharge your batteries and do things you enjoy but can't do with your child, and provides your child with an opportunity to interact with other adults and children and experience something new.

Childcare services

You can use the Scottish Childcare website to search for childcare services in your area, including toddler groups, kids clubs and holiday schemes.

Unfortunately, you may find it hard to access childcare services if your child is severely disabled or has behavioural problems. Talk to your health visitor about this - they should be able to link you up with services that can help you, provided by social work or local voluntary organisations.

Getting away

If you need to get away for longer, you can ask your doctor or social worker to help you arrange a place for your child in residential care. This could be in a special unit or a residential home. You can search for a suitable care home at the Better Caring website.

Read the page on getting a break to find out more about respite care and holidays.

What happens when my child goes to school?

If your child is disabled or has a medical condition, they are likely to require additional support at school. You can find out more about education for children with disabilities or special educational needs at the following websites.

  • Parentzone Scotland helps parents to get involved in their children's education. Their website offers information on choosing a school and supporting your child's learning, and has advice for parents of children with special educational needs (SEN).
  • Children and young people with special educational needs have a legal right to extra support at school - this is known as 'additional support for learning'. To find out more, contact Enquire, the Scottish independent advice and information service for additional support for learning.
  • The Scottish Government has also produced a guide for parents about additional support for learning.
  • Schools must take reasonable steps to meet the needs of disabled children and ensure that they have access to all facilities. It's against the law for a school to discriminate against your child because of their disability (that is, to treat them less favourably than a non-disabled pupil). You can contact the Equality and Human Rights Commission for advice and information about discrimination in school.

Financial issues

Bringing up a disabled child can be expensive. However, financial support is available to help meet the costs such as child disability benefit. The pages on financial support for parents and financial issues for carers have more information on the support available. Contact A Family also produces a useful guide to benefits if you have a disabled child.

Disability living allowance for children

The main benefit for disabled children is disability living allowance (DLA). You can claim DLA if your child has a severe physical or mental illness or disability and as a result, needs more help or looking after than other children of the same age. DLA is not means-tested, which means that you'll be able to claim it regardless of your financial situation. Find out more and download a claim form at the website.

Self-directed support (direct payments)

If social work has carried out an assessment of your child's needs and it has been agreed that they require children's services, you can ask the council to give the money that they would have spent on these services directly to you. You can then use this money to arrange and pay for the care services your child needs of your choice. Once your child turns 16, the payments will be given to them so they can arrange their own services.

Read more about self-directed support.

Help from voluntary organisations

In some circumstances, you may also be able to get a grant from a voluntary organisation or charitable trust to help support your child's needs. For example:

  • If you're on a low income, you may be able to get a grant from the Family Fund.
  • If your child has mobility problems and you can't get funding for equipment from social work, the NHS or other statutory sources, you may be able to get funding from Whizz Kidz.

The Funder Finder website has more information and advice on getting grants.

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