Mothers of Disabled Children Experienced Greater Psychological Distress After the 2014 SEND Reform

A policy designed to improve support for disabled children and their families was followed by an unexpected outcome for mothers. Our research asks why.

In 2014, England introduced one of the biggest reforms to the system supporting children with special educational needs and disabilities (SEND).

The Children and Families Act was meant to create a more joined-up system, give families a stronger voice and improve coordination between education, health and social care.

Eight years later, a House of Lords Committee described what happened as A failure of implementation. It found that many of the Act's ambitions had not been realised. Families were still navigating fragmented services, growing pressure on resources and what the Committee described as an overwhelming level of bureaucracy.

But there is another question we should be asking.

What happened to the people doing much of the caring?

Looking beyond outcomes for the child

When we evaluate disability policy, we naturally look at what happens to disabled children: whether they receive support, how quickly services respond, and whether their education improves.

Those outcomes matter enormously. But policies can also change what families have to do when support is delayed, difficult to access or does not meet a child's needs. Someone absorbs that gap. Very often, that person is a parent. That is the starting point for the Disability Carer Penalty Study.

Using data from Understanding Society, the UK Household Longitudinal Study, we examine what happened to the mental health of mothers caring for disabled children after the 2014 SEND reform.

What did we find?

Our main estimate points to an increase of around 0.56 points in psychological distress among mothers of disabled children after the reform, relative to mothers in our comparison group.

We measure mental health using the General Health Questionnaire (GHQ), where a higher score represents greater psychological distress.

In other words, we do not find evidence of an improvement in mothers' mental health following a reform intended to improve support for children and families. Our estimates point in the opposite direction.

Figure: Estimated changes in psychological distress among mothers of disabled children around the 2014 SEND reform.

This matters because mothers of disabled children were already experiencing poorer mental health before the policy changed. In our data, their average psychological distress score before the reform was around 12.3, compared with 11.7 among other mothers. The reform therefore took place against an existing mental-health gap. 

But how do we know the reform mattered?

This is an important distinction. If mothers of disabled children report worse mental health than other mothers, we cannot simply conclude that disability caring or a particular policy caused the difference. The two groups may differ in many ways.

Our study therefore uses a method called Difference-in-Differences. Instead of asking whether the two groups are different, we examine how mental health changed for mothers of disabled children after the reform and compare that change with what happened over the same period among other mothers. This gives us a way to estimate the change associated with the policy rather than relying only on differences observed between families. It is also why causal research matters.

Documenting inequality tells us there is a problem. Identifying its causes can tell us where policy needs to change.

Why might a policy intended to help families make things worse?

Our study cannot yet give a definitive answer to that question as it is a work in progress research. But one possible explanation is that changing a system does not necessarily reduce the work families must do to navigate it.

Before the reform, mothers of disabled children in our sample already reported substantially greater caregiving constraints: around 67% reported that caring limited their ability to do paid work, compared with 58% of mothers in the comparison group. The House of Lords later heard extensive evidence about families struggling with bureaucracy and poor coordination between education, health and social care.

Our results are consistent with the possibility that implementation placed additional demands on families rather than relieving them. But this remains a mechanism we need to investigate further as part of our research.

The hidden cost of policy failure

There is a bigger question here. When a disabled child does not receive enough support, the need does not disappear. A mother may reduce her working hours. She may spend more time coordinating services, completing forms, attending meetings or challenging decisions. She may give up education or career opportunities. She may simply absorb more hours of care, and some of that cost may appear in her mental health.

This is what we mean by the disability carer penalty: 

The consequences that can fall on the person providing care when disability, caring responsibilities and public policy interact.

These costs are easy to overlook because much of the work happens inside families and is unpaid. That does not make it costless.

Carers should count when we evaluate policy

Supporting carers is not an alternative to supporting disabled children. The two are connected. A policy can improve one part of a system while creating pressure somewhere else. If we only measure outcomes for the person receiving services, we may never see where that pressure goes.

That is why carers need to be part of how disability policy is evaluated.

 

Not simply by asking whether they are satisfied with a service, but by measuring what happens to their health, work, income, time and opportunities when policy changes. Our findings are still a work in progress, and the causal estimates require careful interpretation. But they raise a question that deserves much more attention:

When the state does not fully meet the support needs of disabled people, how much of the remaining cost is being absorbed by their carers?

 

That is one of the questions the Disability Carer Initiative will continue to investigate.