Why do we expect special needs parents to be grateful for what they get? 

As a parent, my expectations of the state are that my children are provided with an education meeting their needs. As much as I might have concerns about the nature of our education system (which I won’t go into now), navigating the system is not something I find stressful or frightening. I don’t find myself having to continually make the case for what my children need, or feeling as if I should be ‘grateful’ for everything they receive. Yet parents of children with additional needs are continually made to fight for their children to get the education they need. The resilience expected of them is breathtaking.

Over the last two weeks, I’ve had reason to be in daily contact with parents of children receiving special educational needs services who live in the division I represent. This has come about after Kent County Council caused chaos (probably not a strong enough word) after attempting to bring in changes to the home to school transport services.

Currently children whose assessed needs mean they attend special schools can be placed in provision far from home. This makes it is impossible for parents or carers to take them at the same time as siblings and/or around working arrangements. The journey is often too difficult on public transport and the cost of petrol is prohibitive. Therefore, the local authority arranges transport.

Kent families were told in December that, due to an increase in the number of children in this cohort, and with no increased funds made available by the Conservative government that is responsible for the chronic underfunding of local government, changes would need to be made to the present arrangements and they would hear the changes before half term. A chaotic fortnight later, with half term over, many parents continue to await news – they have been told to make their own arrangements to get their child to school ‘for now’ – while others have found the new arrangements completely unsuitable for their child’s needs.

Families I have spoken to are distraught over these changes. They speak of the relationships their children have built up with their drivers and the other children. It is well-documented that children with autism, OCD, anxiety or learning disabilities may have an especially difficult time adjusting to new settings and new people. The lack of information and planning has been very stressful for families who know the impact that even small routine changes have on their children. There appears to be no understanding of the impracticality of this chaotic failure for many families. Sadly, Kent’s experience is far from rare.

It has become the norm for SEND (special educational needs and disability) families to face long delays and many bureaucratic hurdles before getting extra support from local authorities. Ofsted found headteachers complaining that some pupils in mainstream schools waited up to five years for their EHC (education, health and care) plans – making them eligible for additional support – to be approved by councils. We can only imagine the impact that not receiving support has on the children or their families in the interim years and the determination needed by parents to keep fighting.

The idea that parents must be prepared to fight and ‘prove their case’ time and time again seems to be built into the system – with no thought for the impact on families already faced with coning to terms with the fact their child has challenges that they were not expecting. And the challenges upon these families often become multiple.

A 2019 survey by the Disabled Children’s Partnership, a coalition of 60 disability charities, revealed that more than half of parents of disabled children have been forced to give up paid work to care for their child, because they have found the demands of their child’s situation – often including complex medical and behavioural needs – make maintaining a job unrealistic and so find themselves ending up in poverty. Indeed, pupils with SEND are twice as likely to be eligible for free school meals, with 31% receiving FSM compared with 15% of those without special educational needs.

The impact on the health of parents is also significant: the majority of parent carers have been treated by a GP for depression, anxiety or stress, including suicidal thoughts, and two in five have experienced relationship breakdown with a partner after their child’s diagnosis. Unsurprisingly, 67% of SEN parents who responded to a recent survey identified that their own mental health had become worse over the pandemic.

As a society, I think we need to think about why we expect so much resilience from this group of parents and force them to fight for so much that the rest of us are able to take for granted. What damage are we doing to whole families by expecting them to endure so much difficulty? Let’s do better by these families.