Carers Rights Day 2019

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Carers, including those who care for disabled children, have specific rights and these are highlighted on Carers Rights Day, which this year falls on Thursday 21st November.

Being a carer can be a tough job and our members often tell us that they feel that trying to get the help they need is a constant battle. Arming yourself with some information about your rights can help you take the first step towards getting the services you and your child require.

Once a disabled child has been assessed as having a need for services from the local authority, the LA then has a legal duty to provide these services. Section 17 of the Children Act (1989) says the following:

“It shall be the general duty of [the Local Authority]… to safeguard and promote the welfare of children within their area who are in need… by providing a range and level of services appropriate to those children’s needs.”

Any child with a disability is defined as a ‘child in need’ under this act. Even if they don’t have a diagnosis, they are covered if their health or development would be compromised without receiving services.

The local authority has to provide carers with breaks from caring. There is a legal duty for the local authority to ‘assist individuals who provide care for [disabled children] to continue to do so, or to do so more effectively, by giving them breaks from caring’ (Children and Young Persons Act (2008) section 25 which amends the Children Act (1989)).

When the Local Authority are deciding what services to give to carers and their children, they have a legal duty to consider whether the carer wants to:

  • Work
  • Do any education
  • Do any training
  • Do any leisure activities

The Carers (Equal Opportunities) Act (2004) states that the Local Authority must take all of these into account when deciding what services to give to carers and their children. If these things aren’t fully taken into account in the child’s assessment, then the carer can demand their own separate carer’s assessment (Carers Act 1995).

The Employment Act (2002) gives carers the right to request flexible working, however it’s important to be aware that employers aren’t bound to grant this but must give business reasons for refusing this.

You can claim for Disability Living Allowance for your child even if they haven’t yet got a diagnosis. The Department for Work and Pension’s criteria for DLA simply states that the child must ‘need extra looking after and or have walking difficulties’.

Top tips for getting what you are entitled to:

Find out who you should speak to. If it’s about a service which should be provided by the Local Authority, speak to your Social Worker if you have one (or your child’s). If you don’t have one, call Gateway to Care, Calderdale Council’s initial point of access. Use the internet or make some calls, and ask who would be the best person to address your query to. Get their phone number, address and email if possible.

Decide how you would like to raise your request – telephone tends to be the initial and less formal way of requesting services, however there are benefits to putting things in writing as this helps you to keep a record, and you may feel more confident putting your request down on paper. Certain things must be in writing, such as claims for Disability Living Allowance which should be on the relevant form.

Be clear about what you are asking for.

Where possible, make it clear where your right to the service you’re requesting comes from, as this makes it very hard for the person you’re speaking to, to refuse your request. If it’s law, try to quote this e.g. “it states in section 17 of the Children Act (1989) that the Local Authority has a duty to provide services to meet my child’s needs, as they meet the criteria under this act of a ‘child in need’.”

Give a deadline. Putting a time limit on the length of time you’re prepared to wait for a response means that you aren’t left without an answer for too long.

Ask for the response to be made in writing, so that you can keep a record. You could ask that they telephone you to let you know the outcome as soon as a decision is made, but ask them to then follow this up in writing. Don’t forget to include your contact details!

Have confidence in what you are asking for – you have rights, and shouldn’t be worried about speaking up about the things that are important to your family. But ensure that you come across as assertive, confident, calm and polite, rather than aggressive.

If you’re not happy with the response you receive following this, then consider making a complaint. Put your next contact in writing, and include a sentence along the lines of the following: “If I have not received a satisfactory response within 14 days of the date of this letter, then I will have no other option than to follow the complaints procedure”. Sometimes this is enough to get what you’re asking for, without actually making a complaint. The complaints procedure should be readily available if you request this.

You may have further options following this if you’re still not happy, but what to do depends on what it is you’re challenging. You can consider complaining to the Local Government Ombudsman if it’s about the Local Authority, you can consider speaking to your local MP or the media.

For benefits claims, you instead need to firstly request that the decision is revised, following this you have a right to appeal if you are still not happy. The DWP can then either change their decision, or send the case to an independent tribunal.

Ultimately, if you still wish to challenge decisions further, you may wish to seek legal advice. You could be entitled to legal aid to help towards the costs of this – there’s a handy tool on website – which helps you to check whether you might be entitled.