For many parents, a diagnosis can help to provide clarity around a child’s symptoms and open up pathways for more support both for themselves and their child. However, it can take a long time for a child to receive a diagnosis. This can be due to a variety of reasons including the child’s age, how their condition develops as they get older and waiting times for specific assessments.
Supporting a child with additional needs can be challenging and so it is important for parent carers to have access to support even when a child does not have a formal diagnosis. This article outlines some of the support available to help support a child’s needs and services which parent carers can access to help them in their caring role.
Understanding your child’s care needs
When a baby is born, they need all of their health and wellbeing needs met. As they get older, they often start to become more independent with some of these such as holding their own bottle, going to the toilet on their own and getting dressed. These will all happen at different times for each child. However, for children with additional needs, they may need support with these for longer. When the support with their health and wellbeing needs is due to their health condition, rather than their age, we call this a care need.
Care needs might include
- Physical care and helping them to mobilise
- Personal care and hygiene
- Eating and drinking
- Getting dressed
- Helping them to communicate with others
- Keeping them safe from dangers
It can also include administering medication, checking on them throughout the night and emotional support. For more information on the role of parent carers, check out our Introduction to.
Many places will also often have an accessibility department or a contact who you can talk to about your specific needs, so it’s always worth getting in touch with them in advance. Informing people about your particular needs means they can be prepared to do all they can to support you and make your time with them special.
If you’re planning a trip to the country, Accessible Countryside for Everyone (ACE) also provides helpful information so you and your family can follow wheelchair-friendly paths, hire adaptive mountain bikes and take part in all sorts of other recreational activities with tailored support - though not necessarily all in one day.
Treatment and services to help with a child’s health needs
If your child would benefit from support with a specific need like communication or mobilising (standing, walking etc) due to a possible condition, there may also be services available to help. This type of support will be very specific to each child so it can often be helpful to speak to a GP who can refer them to more specialist support.
Accessing support through the child’s school or childcare
If a child experiences challenges at school or childcare which impact their ability to thrive, they may have Special Educational Needs (SEN). Schools are able to offer support to children with SEN, even without a formal diagnosis. Schools will likely offer support through an Education, Health and Care Plans (EHCP) or Individual Education Plan (IEP). For more information on support children can access through school, you can read our articles on SEN needs and EHCPs.
Accessing support through your local authority
If your child has additional needs, you may be entitled to support through your local authority. The local authority can connect you to the relevant treatment, therapy or other support services for your child’s specific needs.
To access this, local authority will complete a social care needs assessment which looks at your child’s behaviours and patterns, eating habits, symptoms and care needs to understand what support would be most beneficial for you and your child. You can request this assessment with your local authority or ask your GP or health visitor to do this on your behalf.
Support for you as a parent carer
Supporting a child with additional needs can often present lots of unknowns, even more so when the cause of the challenges is unknown. Having support in place for you as a parent carer can help you to remain resilient and well in your caring role allowing for a healthy balance between your caring role and other aspects of your life, long term. Carers First can help with that. Alongside our tailored articles for parent carers, we have a range of 1-1 services, activities and dedicated carer support groups for you to choose from. We also have carer courses, toolkits and resources to help. You can access all of this through the Carers First website. From there you’ll be able to connect with the right support online, by phone or face-to-face within your local community.
Many parent carers say that speaking with others in a similar situation is hugely valuable. Being able to share what you’re going through, ask questions and learn from other parent carers’ experiences within a supportive, non-judgmental and confidential space can be a great help. Carers First offers opportunities to connect with peers, meet other parent carers and join condition specific groups. You are also welcome within our Facebook Community, register with Carers First and join us.
Financial support available for parent carers
There is some financial support available for families who have a child with additional needs. When supporting a child with additional needs, a useful first step would be to see if they are eligible for any benefits, such as Disability Living Allowance (DLA). If they are over 16, they may be eligible for Personal Independence Payment (PIP). These benefits are not “means tested” so do not consider your financial situation. Instead, they are assessed on need, which is documented in the application form. This can be particularly complex for children so it can be helpful to speak to your Citizens Advice Bureau for advice. For more information on financial support, you can have a read of our article on financial support.