Disabled children: national eligibility criteria needed to

National eligibility criteria are needed to end the "postcode lottery" in support for disabled children, a two-year review of the law on social care for the group in England has found.

The Law Commission made the call in a government-commissioned report that set out recommendations to simplify an "unnecessarily complex" legal framework in order to provide disabled children and their families with clearer rights and more consistent support.

These included placing councils under an express duty to assess disabled children's needs, and a separate duty to meet needs, subject to national eligibility criteria, and giving children, their parents and carers rights to independent advocacy where they would otherwise struggle to participate in assessments or care planning.

The proposed changes would be achieved by amending the Children Act 1989 to introduce a discrete set of rights and entitlements for disabled children, backed by clear guidance for councils on striking an appropriate balance between meeting children's needs, and those of their families, and safeguarding them from harm.

‘A complex, outdated and potentially unfair framework’

The commission’s recommendations are based on meetings with about 1,000 stakeholders - mainly families with disabled children and local authorities - a consultation on provisional proposals, which garnered 176 responses, and its analysis of the current law.

It concluded that the current framework was overly complex, outdated and potentially unfair.

The commission said provisions on the social care of disabled children were “spread across numerous pieces of legislation”, which had to be “read alongside an extensive body of regulations, case law and guidance”.

Under section 17 of the Children Act 1989, a disabled child is defined as being “blind, deaf or dumb or suffers from mental disorder of any kind or is substantially and permanently handicapped by illness, injury or congenital deformity”. Not only was this offensive, but it did not include conditions such as autism, said the commission.

While section 2 of the Chronically Sick and Disabled Persons Act 1970 requires councils to provide services to disabled children if they are satisfied that this is necessary to meet their needs, case law has established that they make take their resources into account.

This has allowed councils to set their own eligibility criteria, creating a “postcode lottery” in provision that was “potentially unfair” and contrary to the intent of the 1970 act, added the commission.

The current law on social care for disabled children

Comprehensive information on the law on disabled children is available to anyone with a licence for Community Care Inform Children, on our disabled children knowledge and practice hub. We have provided an overview of the key duties below:

Child in need duties: s17 CA89 accords child in need status to all disabled children, placing their local authority under a duty to “safeguard and promote [their] welfare, and consistent with that duty, promote their upbringing by their families, by providing “a range and level of services appropriate to those children’s needs”.
Service provision: councils acting under s17 CA89 must provide services to disabled children if “they are satisfied it is necessary for them to [do so] in order to meet the needs of the child”, under section 2 of the Chronically Sick and Disabled Persons Act 1970 (s2 CSDPA70). These include providing practical assistance around the home to the child, recreational facilities outside the home, help in accessing educational facilities, assistance with adaptations and travel to and from services provided under s17 CA89.
Special educational needs and disability (SEND): entitlement to SEND provision is governed by the Children and Families Act 2014. For children with an education, health and care plan, section 37 of this act requires councils to specify in the EHCP any social care provision made for the child under s2 CSDPA70 and any other social care provision reasonably required as a result of the child’s learning difficulties and disabilities.
Assessing and supporting parent carers of disabled children: under sections 17ZD, 17ZE and 17ZF CA89, councils must assess the support needs of parent carers of disabled children if they appear to need support, or on request, unless they have already done so and the parent’s needs have not changed. On the back of the assessment, the council must decide whether the parent and child have needs for support, whether these may be met by services under s17 CA89 and whether to provide these services.
Transition assessments: councils are required to assess a child’s needs for care and support on turning 18 under section 58 of the Care Act 2014, and their carers’ needs for support when the child reaches adulthood under section 60 of the Care Act. The trigger for such assessments is that they would be of significant benefit to the person and it appears that they would need care or support when the child in question turns 18.
Provision of care and support on turning 18: in specified circumstances (section 17ZH CA89), councils must continue to provide services under s17 CA89 to young people on turning 18, for example when they were entitled to a transition assessment but it had not been carried out.

'Too much focus on safeguarding at expense of meeting needs'

Alongside its critique of the current framework, the commission said that families had reported multiple problems with the way the law was applied by councils and other agencies, including that:

there was too much focus on safeguarding disabled children from harm at the expense of meeting their needs;
the needs of parents, carers and siblings were often overlooked;
the eligibility criteria for accessing services were often too high;
those assessing the needs of disabled children did not always have expertise in disability;
different teams and organisations operated in silos and did not always work effectively with each other.

Sticking with the Children Act 1989

To address these issues, the commission proposed creating a new legal framework for the provision of social care to disabled children.

While its consultation paper suggested creating this outside the Children Act, respondents warned that this risked leading to the "segregation" of disabled children and the "deprioritisation" of this area of social work, and making it harder to identify and meet disabled children's wider needs.

In response, the commission said disabled children should remain within the scope of section 17 of the Children Act and continue to be classed as "children in need", with its proposed new framework introduced through amendments to the 1989 act.

Proposed new legal framework

The proposed framework would include the following elements:

An updated definition of disability, based on that in the Equality Act 2010: that the person has a physical or mental impairment that has a substantial and long-term adverse effect on their ability to carry out normal day-to-day activities.
A set of statutory principles governing the provision of social care to disabled children: that the best interests of the child should be a primary consideration; that decision makers must have regard to factors including the importance of promoting the child's upbringing by their family, consistent with their best interests, their views, wishes and feelings, and those of their parents and carers, and the importance of their participation in decision making; and that decision makers must check whether the purpose of the proposed decision can be achieved in a less restrictive way.
A single duty to assess the social care needs of a disabled child, triggered if it appears to the local authority that the child is disabled and that they may have needs for care and support arising from their disability.
A requirement that the person assessing the social care needs of a disabled child should have the skills, knowledge and competence to carry out the assessment in question and be appropriately trained, and that they should consult a person who has expertise in the child’s condition, or other aspects of the child’s circumstances, where they consider that the child’s needs require it.
A single duty to assess the social care needs of a disabled child's parent or carer, which should arise upon their request or where it appears to the council that the parent or carer may have needs for support.
A single duty to meet the social care needs of disabled children, subject to national eligibility criteria, with councils retaining powers to meet needs that do not meet the criteria, or pending an assessment, and to provide services to parents, carers and family members with a view to safeguarding or promoting the welfare of the disabled child.
A non-exhaustive list of services that councils can provide to meet these needs, including accommodation, care and support at home or elsewhere, education or leisure, specialist equipment, adaptations to the home, services to assist families and counselling and other types of social work.
A statutory entitlement to a plan for eligible disabled children, setting out what services they are entitled to and how, and by whom, these will be provided, with such plans kept under review.
A right to an independent advocate for a disabled child and their parents or carers during assessments and care planning for the child, if the relevant person would otherwise experience substantial difficulty in understanding, retaining or using and weighing information, or communicating their views, wishes and feelings and they have no appropriate person to represent and support them.
A right for disabled children to, among other things, request an assessment, making representations in relation to assessments or care plans and to opt out of advocacy, where they have the ability to do so, in line with the test of capacity under Mental Capacity Act 2005 (appropriately amended for those aged under 16).
That an assessment of whether a disabled child is likely to have needs for care and support after becoming 18 and, if so, what those needs are likely to be, should begin by the school year in which they turn 14.
The putting into law of the existing dividing line between social care and health care for children, based upon the quality and quantity of the care being provided.
A requirement for councils to appoint a designated social care officer, a senior practitioner responsible for promoting joint working between the social care and special educational needs and disability (SEND) systems.
A fair, accessible, independent and effective system for resolving disputes about social care for disabled children.

The proposed framework would be backed up by a single piece of statutory guidance, setting out the rights and responsibilities of disabled children, families and councils.

The commission said this should include material to help councils "ensure that there is an appropriate balance struck between identifying and meeting the needs of disabled children and their families in a non-stigmatising way and safeguarding them from harm and abuse", in order to "avoid inappropriate stigmatisation of parents and carers".

Current system 'unnecessarily complex'

The law reform body's commissioner for public law, Professor Alison Young, who led on the project, said: "The current system, built on legislation from decades ago, has become unnecessarily complex and is no longer working for children and families."

“Our proposals would create a simpler, fairer and more accessible framework that puts the child's best interests at the heart of decision-making whilst maintaining vital protections. The reforms would end the unacceptable situation where a child's eligibility for support depends more on their postcode than their needs.

“By establishing national eligibility criteria and clearer legal pathways, we can ensure every disabled child has access to consistent, appropriate support. These changes would also empower children by giving them direct rights to request assessments and access independent advocacy when they need it most."

Government to consider findings

The Department for Education said it would consider the findings.

A DfE spokesperson said: “The current legal framework for disabled children in the social care system and their families is fragmented and difficult to navigate.

“We are grateful to the Law Commission for shining a light on this issue and will carefully consider the findings and respond in due course."

The commission's proposals were welcomed by disabled children's charities.

'A real opportunity to simplify the law'

Caroline Coady, deputy director for social care and participation at the Council for Disabled Children, said current policy changes, including reforms to children's social care, provided "a real opportunity to simplify and join up the legal framework of support for disabled children and their families".

She said the council particularly welcomed the commission's recommendations to "retain the Children Act protections whilst enshrining in law the broader rights and entitlements of disabled children" and to require all councils to have a designated social care officer.

“We urge the government to carefully consider the implementation of these recommendations alongside the wider reform agenda and look forward to their response in due course," she added.

Criteria to access social care 'shrouded in mystery'

Anna Bird, chief executive of Contact and chair of charity coalition the Disabled Children’s Partnership, also urged the government to adopt the commission's recommendations in order "to ensure parents of children with high care needs no longer have to fight for months and sometimes years to get the smallest amount of help and support".

"Their implementation would relieve the pressure on schools who are often left to pick up the pieces from social care failings and it would help reduce poverty. It’s crucial that this chance for a fairer, more accessible social care system is taken by the government now.”

Bird said that, currently, criteria to access social care were "shrouded in mystery and different depending on where you live", while the process had been "too focused on safeguarding and created a culture of parent blame when families are simply asking for help".

"This means many more families are providing complex care alone and unsupported, which can lead to increased levels of poverty, illness, mental and physical ill-health, the inability to work and it also risks children going into care," she added.

Support for proposals 'in principle' from children's directors

For the Association of Directors of Children's Services, president Rachael Wardell said: “In principle, we support the aims of bringing greater coherence to, and improved access for, disabled children and their families to the support they need to thrive under the banner of section 17 of the Children Act 1989."

However, she added: “New duties, definitions, criteria, guidance and assessments are proposed. This could lead to an even more complex picture for families to navigate, as well as unintended consequences as we have seen with previous legislation."