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It can feel overwhelming to be a parent of a child with additional needs. The more supported, confident and informed you feel as their carer, the less overwhelming this may be. In the same way, accessing the proper support for your child can help you manage the balance between being a parent and a carer. Many parents share how they feel they don’t know where to start, so we’ve put together some steps to help you navigate the different types of support available. 

A parent carer is someone who has parental responsibility for a child under the age of 18 with additional needs. When supporting a child with additional needs, there may be things they need support with that are related to a condition or disability, which form part of a caring role. Parent carers balance the role of a parent with meeting their child’s needs as a carer.  

Parent carer support for unpaid carers video

Supporting a child who has a disability or health condition can present a range of unique and complex challenges. If your child needs additional or different support, there may be support you can access as a parent carer. Simon talks about what we mean by parent carer and the type of support available.

Understanding your child’s diagnosis and needs

If your child has just received a diagnosis, a useful first step can be becoming more informed about your child's condition. One way to do this is to speak to your GP or health visitor. They will also be able to signpost you to support groups where you can connect with other parents of children with similar needs. Information sessions and workshops might also be available, so making the most of them as you start your journey as a parent carer can be valuable. 

When your child receives a diagnosis, your identity may also change. You become a carer as well as a parent and some parent carers find it takes time to get used to balancing these different roles. The emotional impact of a diagnosis is also very real, and many parent carers find themselves experiencing some difficult emotions like confusion, sadness, anger and grief. Our article on Managing Emotions as a Parent Carer goes deeper into this. 

Identifying yourself as a carer can be difficult for some parents who feel that looking after their child is something they would naturally do in any circumstance. The distinction is important, though, because registering as a carer offers both you and your child opportunities to access useful support in lots of areas. 

Supporting your child in voicing their needs and advocating for their own care is vital to encouraging their independence. At other times, you will be able to advocate for them. Advocating for your child means stepping forward to ensure their rights and needs are respected. For example, you might have already acted this way by getting a diagnosis for them.  

Other areas you might need to advocate for your child might be applying for specialist equipment for your home, requesting extra support in a school setting, or identifying possible discrimination. In certain situations where you feel you need extra support, it can be helpful to access professional advocacy services. It is also possible to advocate for yourself.

More on self-advocacy here.

It is not easy being a parent carer, and no one knows this better than other parents in a similar position to you. While everyone’s experience is unique, connecting with other parent carers in groups in your area or online is a great way to build a trusted support network.  

Another way to access support could be by requesting a Parent Carer Needs Assessment, which you are entitled to under the Children and Families Act 2014. Your local authority provides this assessment and will identify what support can be implemented to help you care for your child. Your GP, health team, or local carers centre can give you some advice on getting started. 

There may be times when multiple organisations might be involved in supporting your child. You might be dealing with various professionals to help with their medical needs, which may differ from the team offering support around their education. 

To ensure that your child is fully supported in all areas, each agency must have a full picture of your child’s needs, and an EHCP, or Education, Health and Care Plan, can help. An EHCP is a legal document describing a child’s needs, the support they require, and the outcomes they want to achieve. As a parent, you can request an EHCP assessment from your local authority. For example, if your child with additional needs is starting school, they may benefit from having an EHCP in place. Schools can also implement an IEP, or Individual Education Plan, to ensure your child’s educational needs are met. For more information on EHCPs, see our article here.

Planning changes to support your child as they get older 

As your child gets older, their needs will change, and navigating these transition times can be easier for everyone if you have support in place. Our guides on how to support your child during these times of transition might be helpful:  

Supporting your child as they transition from primary to secondary school 
Navigating the transition into adulthood 

It can be beneficial to know about what financial support is available for you as a carer. As a parent carer, the demands on your finances may change, and it’s essential to be aware that financial support is available for you as a carer. For example, you may be entitled to receive a Carers Allowance and certain grants for specific needs. Find out what you might be entitled to by checking out our website here

If your child is eligible to receive a DLA or Disability Living Allowance, as their parent carer you will become the appointee for their benefits. Our article on 'Disability Living Allowance for Children' might be helpful.  

Being a parent carer is a long-term commitment, and it can be an extremely demanding role at times. It can, therefore, be important to ensure that your wellbeing is a priority, too, so that you can ensure your caring role is sustainable long term whilst maintaining a balance with other areas of your life too.

Learning how to relax, scheduling breaks and being open to receiving support are all important ways that you can look after yourself. Don’t know where to start? Check out our article on 'Looking After Yourself As A Carer'.  

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