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Seven things a parent carer needs to know

Cara Japon, from Action for Family Carers in Essex, has pulled together this list of six things every parent carer needs to know. As a parent carer myself, and looking back over the last 13 years, I completely agree.

Illustration of two parents and their kids.

1. Identify ourselves as a carer

It can be difficult to recognise ourselves as carers. Especially, when we see ourselves as simply being 'Mum', 'Dad', ‘a parent’ or just doing what needs to be done for our child.

However, identifying and registering as a carer opens up opportunities for further support for ourselves.

Including the legal right to have a Parent Carer's Needs Assessment or an Adult Carer Support Plan, in Scotland.

If our disabled child has siblings, they can also be identified as ‘Young Carers’, opening more doors to support for them too.

A good starting point is contacting our GP or local Carers Centre.

2. Get a Parent Carer's Needs Assessment

As parent carers, we’re legally entitled to a Parent Carer's Needs Assessment under The Children's and Families Act 2014, for caring for our disabled child (who is under 18). This is our equivalent of a Carer's Assessment - and is often referred to by the name Carer's Assessment. In Scotland it's called an Adult Carer Support Plan.

Under the Children Act 1989, it states a local authority must:

“Assess whether a parent carer within their area has needs for support and, if so, what those needs are”

The goal is to help our local authority understand what support can be put in place to help us care for our child effectively. These may include, financial support, emotional support and practical support.

How do I get a Parent Carer’s Needs Assessment?

The Assessment is free and provided by our local authority. Our GP can refer us to a social worker (from the Children with Disabilities team).

Our local carers’ centre - which has a statutory right to care - can also carry out these assessments, so do check for their number, email or opening hours.

Sometimes a Parent Carer Needs Assessment is part of a wider family assessment. This may be called a "Child and Family Assessment" or "My Assessment and Plan". It's important to ask if our needs as the carer, are being considered as part of the assessment. Remember - there is a legal obligation.

What should I expect during a Parent Carer’s Needs Assessment?

During the assessment, it's important to consider the effect our caring role has on our life outside of caring. For example, our work, our own personal health, and our wellbeing.

“The assessment is not means-tested and it’s important to know that it is not a judgment of our caring; it is an acknowledgement of the extra work and responsibilities that we may have in our caring role.”

Our appointed social worker or Carers’ Centre will complete the Parent Carer's Needs Assessment with us. And the assessment can be combined with an assessment for our disabled child’s needs too.

When planning any care package for ourselves or our child, it is important to discuss our employment, training and family life needs with the social worker. The Parent Carer's Needs Assessment must take into account our wellbeing, the need to safeguard and promote the welfare of our child, and any other children living with the parent.

Cerebra have downloadable guides to support parents in getting started with their Carer's Assessment in England and in Wales.

What support can I expect after a Parent Carer’s Needs Assessment?

We can expect greater clarity on which steps should be put in place to support us. These include:

  • Support services to be put in place to help us provide care

  • Have direct payments setups for us to help us provide care

  • Financial support for respite breaks (they can also come from direct payments)

  • A one-off payment to meet a specific need, known as the S17 payment (or S17 Financial Assistance). This is basically a way to access a financial payment to support the welfare of a child. It is usually accessed via something called a "Child in Need" assessment. We can ask our GP or social worker for an assessment.

Remember, talking about our feelings and asking for help is not always an easy thing to do. Carers have shared that they can feel quite low after an assessment - as we spend the time talking about "how hard" everything is. It can be helpful to anticipate this and plan for some quiet time afterwards, or arrange an activity that will help to lift our spirits.

Unpaid carers in the Mobilise community have shared their own experiences of having a carer’s assessments. Read their top tips and use these 10 questions that we’ve come up with, to help you prepare for yours.

3. The legislation that protects us

Illustration of a nuclear family.

The Equality Act 2010

Under this Act, it's illegal to discriminate against us because of our responsibilities as a carer. It's also illegal to discriminate based on our child’s disability. This includes early years providers, schools, colleges, local authorities and other educational settings.

These settings must make reasonable adjustments. For example, providing aids such as induction loops, so that disabled children and young people aren’t disadvantaged comparatively with other children.

The Act also protects us and our children from being indirectly or directly discriminated against, victimised or harassed.

“Under the Equality Act, being a carer is not a protected characteristic; however carers are protected by association with someone who has a disability, long-term condition, etc. This is for the provision of goods and services.” Carers Rights and the Law

The Special Education Needs & Disability (SEND) Code of Practice

SEND Code of Practice details legal requirements and statutory guidance which Local Authorities must adhere with in their educational duties.

“It explains the duties of local authorities, health bodies, schools and colleges to provide for those with special educational needs, under part 3 of the Children and Families Act 2014.” - SEND Code of Practice

We can download the full SEND Code of Practice here. And charities such as IPSEA and SOSSEN have lots of valuable support tools, information and advice lines.

Whether children are in an early years setting, school or college, all children with disabilities or with special educational needs (SEN) are entitled to have their needs met. When making decisions about disabilities or SEN, your local authority must:

  • ensure that children, young people and their parents participate, as much as possible, in the decisions that affect them.

  • have regard to the wishes, feelings and views of children, young people and their parents.

  • provide support to children, young people and their parents in order that children and young people can properly prepare for adulthood and do well educationally.

Education and Health Care Plan (EHCP) in England

If our child has special educational needs that exceed the levels of support that SEN support can offer, then we can request an assessment for an EHCP. In fact, a request can be made by anyone who identifies the need for additional support, including doctors, health visitors and teachers.

An EHCP is a legal document, which identifies our child’s additional needs across education, health and social care. It goes on to detail, exactly how these needs will be met.

An EHCP is a legally binding document and it can be valuable to get support from charities such as SOSSEN and IPSEA. The language used is really important, to ensure there is no ambiguity in the support that is being agreed. The two charities mentioned can provide lots of valuable advice and support.

If we’re making the referral for an EHCP ourselves, then IPSEA has a template letter, details of the process and lots of advice to support us.

Carers tell us:

"Expect to receive a 'decline to assess' when you first get started. Charities like IPSEA and SOSSEN have been a godsend in helping me to navigate the system and assert my child's rights -pushing things from a 'no' to a full EHCP."

Co-ordinated Support Plan (CSP) in Scotland

In Scotland, the equivalent of an EHCP, is known as a Co-ordinated Support Plan (CSP). This is also a statutory plan for children and young people with enduring additional support needs in education. And local authorities must provide the support written on the CSP.

Enquire have a simple factsheet on Co-ordinated Support Plans that breaks down who may be eligible for a CSP, how we can request for one, and what we can do if we're not happy with the CSP.

In Wales, the special needs system (SEN) is being replaced by Additional Learning Needs Code for Wales 2021 (ALN). It has been rolling out since 2021 and will be fully in place by Summer 2024. This means that if our child requires support in education for the first time after September 2021, then their support will be placed under the ALN framework.

The Children and Families Act 2014

The Children and Families Act protects children, as well as offering specific protection to young carers, young adult carers moving into adulthood, and parent-carers of disabled children (including those with a long-term condition).

The Act includes the rights as parent carers, to:

  • The right to an assessment of whether a parent-carer has needs for support (Parent-Carers Needs Assessment).

  • The right to ask for support where the local authority hasn’t previously recognised a need.

  • The right to protection of our wellbeing (as defined by the Care Act 2014).

The Care Act 2014

As our children transition into adulthood, our protection moves from the Children and Families Act 2014 and into The Care Act 2014. Which specifically gives adult carers of adults the right to support and protection from their local authority.

Illustration of a woman at her work desk.

4. Financial Support (Carer's Allowance, Carer's Credit)

When we become a parent-carer, much of our life may change - at least for a while. This may include our ability to work. There is financial support available, depending on our circumstances. Including:

  1. Carer's Allowance: A non means-tested allowance, paid if we’re caring for more than 35 hours per week, our cared-for receives DLA or PIP, and if we’re £128 or less per week. We can check our eligibility here.

  2. Carer’s Credit is a National Insurance credit that helps fill any gaps in our National Insurance record. If we receive Carers Allowance, we will get Class 1 credits automatically and do not need to apply for Carers Credit. You can apply for Carer’s Credit using the DWP Carers Credit Application Form.

Accessing benefits can feel overwhelming, especially if we’re already in receipt of benefits such as Universal Credit. It can all feel a bit complicated to unpick and work out what's best for us. However, it’s important to understand how we can best benefit and support our unique situations.

We can get support with benefits from our local Carers’ Centre, as well as Citizens Advice.

Also, it’s important to note that our child with disabilities may also be entitled to financial support. Either through the Disability Living Allowance or PIP (if our child is 16 or older).

Charities such as Cerebra, offer fantastic support to help us navigate these systems, including various guides, including:

5. Challenge decisions

It is likely that along the way, decisions about support will not always go in our favour.

Parent carers in our community tell us this, and their advice is to always 'challenge the first decision', if it is not what we were hoping for. From DLA decisions to EHCP assessments. From CAMHS referrals to Blue Badges, parent carers report that challenging decisions can often lead to the support we need.

It takes being assertive and having self-confidence, something that our parent carers tell us grows with each passing year.

In some scenarios, it also takes knowledge of the system, to give us confidence. Charities such as IPSEA and Contact have great resources and advice.

6. How to get support for siblings

If our disabled child has siblings, it's very likely that they are also "young carers". It's helpful to know this, as it can open up support for them. Through local Carer's Centres who might run youth clubs and activities, to extra support at school or access to therapy.

"My son's school let him use the classroom at lunchtime to get his homework done. He finds this really helpful, as his sister can be so disruptive at home."

"Our local Carers' centre runs a youth club for young carers. I don't think they particularly talk about being a young carer, but he gets to hang out with other kids who are in the same situation. It's one of his favourite clubs and he can't wait to go every month. I love that there is something special for him."

Illustration of two people catching up.

7. Find our tribe

And what about us? The parent carers! Becoming a parent-carer is quite a journey. Highs, lows and everything in between. Whether diagnosis was received prenatal, at birth or came later. We will all be finding our own way through, and there is a huge benefit in finding ‘our tribe’.

This includes staying connected to the people around us - our family and friends, colleagues and neighbours. Many of us can experience feelings of isolation and loneliness. And sometimes those around us, will be unaware that we’re feeling this way.

So when we’re struggling it’s important to speak up, and let our family and friends know.

There are lots of ways to find support online. Including the Mobilise daily virtual cuppas, which are available to all carers.

We can also join the Mobilise Community to chat with a growing community of other unpaid carers too. This way we have somewhere we can feel supported, safe and uplifted. We can also offer condition-specific tips to other unpaid parent carers going through the same thing, and vice versa.

Depending on our circumstances there are also great blogs and social media accounts we can follow. Many charting the life of other parent carers and the journeys they are on. Here’s a few accounts to inspire us:

Stephs Two Girls - Life with the Pathological Demand Avoidance type of Autism

Downside Up - Single Mum, campaigner and champion of her daughter with Down syndrome

Contact Facebook group for families with disabled children

Special Needs Jungle - Parent-led SEND (Special Educational Needs) influencers

Affinity Hub - Parent carer emotional wellbeing

Wherever we are in our journey, remember to keep looking after ourselves too. We are doing a phenomenal job in difficult circumstances.

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