The Disability Carer Penalty

Evidence from the 2014 SEND Reform in the UK

Working Paper | Research in Progress

- Author: Ysabel Vieira - 

Department of Political Science, University College London 


Background and context 

In 2022, a House of Lords Committee published its post-legislative review of the Children and Families Act 2014 under a striking title: A failure of implementation.

The Committee found that the Act had not delivered on many of its ambitions. Looking specifically at the SEND reforms, it concluded that the reforms were "fundamentally, the right ones”, but that too little thought had been given to how they would be implemented or how their success would be measured. It also highlighted a system in which education, health and social care remained poorly coordinated, while families faced growing bureaucracy and pressure.


These conclusions raise an important empirical question: 

What did the reform actually do to the families it was intended to support?

 

The Disability Carer Penalty Study takes that question to the data. Using longitudinal data and a causal inference design, we estimate how the 2014 SEND reform affected the mental health of mothers caring for disabled children. To our knowledge, this is the first econometric study to estimate the causal effect of the reform on this group.

Our results point in the same troubling direction as the concerns raised through parliamentary scrutiny: a reform intended to improve support for children and families was followed by worse mental health outcomes among mothers of disabled children. The study provides new quantitative evidence on a part of the policy's impact that has received far less attention: what happened to the carers themselves.

Caring for a disabled child can affect many aspects of a parent's life. Mothers of disabled children are more likely to experience poorer mental health and face disadvantages in employment and earnings. But observing these differences does not tell us what causes them or how government public policies can make them better or worse for families. 



The Disability Carer Penalty Study asks a causal question: 

How do policies designed to support disabled children affect the mothers who care for them?

Our current study examines the 2014 Special Educational Needs and Disabilities (SEND) reform in England and its impact on the mental health of mothers with disabled children.


The research question 

The Children and Families Act 2014 introduced major changes to the SEND system, with the aim of improving support for children and young people with special educational needs and disabilities and their families.

We use this policy change to investigate whether the reform affected the psychological well-being of mothers caring for disabled children.

The study asks:

What was the causal impact of the 2014 SEND reform on the mental health of mothers with disabled children?



Data

The study uses data from Understanding Society, the UK Household Longitudinal Study, which follows the same households over time and collects detailed information on health, employment, income, and other family circumstances.

We compare mothers with at least one disabled child with mothers whose children are not disabled, before and after the SEND reform.

Our main measure of mental health is the General Health Questionnaire (GHQ) psychological distress score. Higher scores indicate worse mental health.


How do we estimate the effect?

Comparing the mental health scores of the two groups would not tell us whether the SEND reform caused any change.

Mothers of disabled children were already experiencing higher psychological distress before the reform. In our data, their average pre-reform GHQ score was around 12.3, compared with 11.7 among other mothers.

We therefore use a difference-in-differences research design. Rather than asking whether the two groups are different, we examine how outcomes changed over time for mothers of disabled children relative to the change experienced by the comparison group.

This gives us a way to construct a counterfactual: what would we expect to have happened to the mental health of mothers with disabled children in the absence of the reform?






What do we find?

Our main estimate shows an increase of approximately 0.56 points in psychological distress among mothers of disabled children following the SEND reform, relative to the control group.

In practical terms, the reform did not coincide with the improvement in maternal well-being we might expect from a policy intended to strengthen support for families. Instead, our estimates point towards a deterioration in mothers' mental health.

The result remains similar across several model specifications.





What might explain this?

One possible explanation is that changes intended to improve support also created new demands for families.

Before the reform, mothers of disabled children in our sample were already more likely to report that caring responsibilities limited their ability to do paid work. Around 67% reported a high caregiving burden, compared with 58% in the comparison group.

The pattern we observe after the reform is consistent with the possibility that greater caregiving demands or administrative complexity placed additional pressure on families.

This is a plausible mechanism, not a result we can establish conclusively from the current analysis.


Why does this matter?

Policies affecting disabled children do not operate in isolation. They can also change the responsibilities, time, and resources required from the people providing their care.

This means that evaluating disability policy only through outcomes for the person receiving support may miss an important part of its impact.

Our findings raise a bigger question at the centre of the Disability Carer Penalty research programme: 

When public services do not fully meet the needs of disabled people, how much of the remaining cost is absorbed by unpaid carers?

That cost may appear in lost employment or earnings. It may appear in time, administrative work and reduced opportunities, raising the inequality gap between carers and non-carers' parents. And it may also appear in carers' mental health.

Understanding these effects matters if policy is to support disabled people without placing unsustainable costs on the family members who care for them.


A note on the findings

This is an ongoing research study, so results should be interpreted with care.