Law Commission review of the Disabled Children Welfare Act: How you can get involved


Conor Johnston and Effa Jones, Law Commission

Today we bring you an article by two people involved in the Law Commission’s review of the Children Act. Time and time again, children’s social care is equated with protecting children from abuse and neglect. Social care support is essential to enable many disabled children to live full lives, have fun, make friends and participate in society. Yet despite disabled children being legally classed as ‘children in need’ and having the right to be assessed for their social care needs, their families are routinely ignored by council social care departments.

The situation hasn’t improved because the law is complex, confusing and full of outdated terminology. It stems from 10 different Acts of Parliament, regulations and guidelines dating back more than 50 years. The legal framework is unwieldy for families, leaves out important areas that should be covered, encourages shifting of responsibility and creates gaps that children with disabilities and their families often fall into.

Parents have been calling for the law to be reviewed, clarified and strengthened for many years, and the Disabled Children Partnership, of which we are a member, has made this one of its priorities for reform. We wholeheartedly welcome the Legislation Commission’s task force to review the entire legislative environment underpinning the social care of disabled children.

Our article is by Conor Johnston, lead lawyer for the Disabled Children Social Services Project and a barrister specialising in social services law, and Effa Jones, project research assistant who has been involved in the review since the project’s inception…

What is the Child Welfare Act Commission Review and how can you contribute? by Conor Johnston and Effa Jones

The Law Commission is an independent statutory body. We work to ensure that the law is as fair, modern, simple and cost-effective as possible. We do this by reviewing the law in England and Wales through research, consultation and making recommendations to Government for reform.

Social welfare law for disabled children is outdated. Some of the law in this area dates back to the 1970s and envisages social services providing disabled children with, for example, “wireless” (like a radio). Some words and definitions are even older. For example, section 17 of the Children Act 1989 states that a child is disabled if they are “blind, deaf or mute or suffer from any mental disability or are seriously and permanently disabled by disease, injury, congenital deformity or any other disability as may be specified”.

This definition, which many agree is outdated and offensive, can be traced back to the creation of the welfare state, originating in a law meant to help wounded soldiers find employment during World War II. It was created at a time when awareness of neurological disorders such as autism was still in its infancy. (Indeed, one provision in a now-void 1970s law originally defined autism as a type of “infancy psychosis.”)

However, the problem with social welfare law for children with disabilities is not just a matter of words and definitions. The law is also very complex. For example, there are about 13 types of assessment obligations that relate directly or indirectly to children with disabilities. Not all of them are written down, and those that are written down are spread across various laws.

Support, not protection

When we start to look at how the law works in practice, even more issues emerge. Many parents with disabled children responded to the Independent Review of Children’s Social Care, raising concerns about their experiences when trying to get support for their children. Parents said that assessments often focused on safeguarding rather than the child’s disability-related needs. For example, one parent said “…families who are trying their best to get support are labelled as bad parents and harming their children.”* Responses to the review also explained that postcode inequalities exist. Across the country, services available to disabled children vary widely from area to area. [*The independent review of children’s social care: Call for ideas.]

These are the issues we are looking at as part of the review of the Social Care of Disabled Children Act, a project commissioned from us by the Department for Education as part of the work they have done on their Stable Families, Based on Love, SEND and AP Improvement Plans following the Independent Review.

Please see below for the terms of reference for our review. Please see our website. The focus of the review is social care, not SEND legislation, but there is important overlap. Social care should clearly be a key component of an EHCP, although it is often not. In addition to that, our terms of reference require us to look specifically at how social care legislation relating to disabled children aligns with other parts of the legislation, including support for SEN.

What stage is the review at now?

We are currently in the pre-consultation stage of the project, which means carrying out extensive legal and policy research, as well as talking to a range of people – parents, young people, local authorities, social workers, charities, academics and judges – to understand what works and what doesn’t.

So far, we have heard a variety of reasons why the current system is not working. For example, parents tell us that those assessing their children do not always understand disabilities or their child’s specific conditions. We hear that assessments of parental carers are often not carried out at all, or when they are, appropriate services to meet identified needs are not always available. We have heard from mothers who have been offered things like gym memberships or massages in lieu of a short break – services that they were unable to access because of their caring responsibilities, and for which they needed a short break in the first place. Meanwhile, local authorities tell us that their financial burdens, lack of resources and under-representation of social care workers make it difficult for them to provide social care effectively.

These are just a snapshot of some of the themes and issues that have emerged from this pre-consultation phase of the project. This will help us understand what’s wrong (and what’s right) with the current system, which will then feed into a full public hearing. This hearing will set out as fully and impartially as possible what’s wrong with the current system and how the law could be changed to address those issues. Of course, changing the law won’t solve all the problems we hear about – but we need to identify where changes to the law could enable us to deliver social services more effectively for children with disabilities.

How can I participate?

This is where you come in. As we go about our consultations, we need your input. Do you agree or disagree with the way we describe the problems with the current system? Is there anything we’ve missed? Are there groups we haven’t considered, especially those we don’t hear from often? And perhaps most importantly, do you think our proposals would work? If not, what do you think we should do instead?

We aim to run the consultation over a three month period, starting in July 2024, to give you the opportunity to answer some questions. Once the consultation opens, we want to hear from as many of you as possible, so watch this space. If you would like to get in touch in the meantime, please contact us at [email protected].

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Catriona MooreCatriona Moore has a background in policy and communications and has worked for a number of health, social care and disability organisations.

When her youngest daughter was diagnosed with Rett Syndrome in 2009, just before her second birthday, Catriona realised she had to deal with something she thought she understood in principle.

She balances her work as a policy manager for a national charity with caring for her daughter and advocacy work. She is passionate about improving the lives of children with disabilities and their families, and making the systems that support them work more transparently and fairly.

Catriona writes for Special Needs Jungle as an individual and all opinions expressed are her own.

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