Cara Japon, from Action for Family Carers in Essex, has pulled together this list of 6 things every parent carer needs to know. As a parent carer myself, and looking back over the last 11 years, I completely agree.
1. Identify ourselves as a carer
It can be difficult to recognise ourselves as carers. Especially, when we see ourselves as simply being 'Dum', 'Dad', ‘a parent’ or just doing what needs to be done for our child.
However, identifying as a carer opens up opportunities for further support for ourselves.
Including the legal right to have a Carers’ Assessment (more detail is below).
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 Carers’ Needs Assessment
As parent carers, we’re legally entitled to a Parent Carers Needs Assessment under The Childrens and Families Act 2014. This is our equivalent of a Carers Assessment - and is often referred to by the name Carers’ 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) or in some cases, our local Carers’ Centre can help.
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 Carers 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 assessment will take into account the wellbeing of us, as the parent carer, plus the need to safeguard and promote the welfare of the cared-for child and any other children living with the parent.
Cerebra have downloadable guides to support us in getting started with Carers’ Allowance.
3. The legislation that protects us
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 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
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)
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.
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.
4. Financial Support (Carers Allowance, Carers Credit)
When we become a parent-carer, much of our life may change - at least for awhile. This may include our ability to work. There is financial support available, depending on our circumstances. Including:
Carers 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.
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.
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.
6. Find our tribe
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 in the Mobilise Facebook group 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 advice 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.