Self-reported disability rate among care leavers double that recorded by councils, finds research

The self-reported rate of disability among care leavers is double that recorded by councils, research has found.

Meanwhile, recorded disability rates among children in care and care leavers differ widely between local authorities, according to the report, published this week by Coram Voice.

The charity also found that leaving care practitioners had limited data and information on disability and felt it was not always well understood within their teams, while disabled young people reported it was difficult to get the support they needed.

Coram Voice said its findings showed that the “under-recording of disability” meant young people’s needs were not fully understood, and there was too little information to plan support for them and monitor its effectiveness.

Dearth of data on care experienced disabled people

It carried out the study to address a dearth of information on disability among care experienced young people. For example, the Department for Education (DfE) does not collect information from local authorities about young people’s disabilities in its annual dataset on looked-after children and care leavers.

The charity sent a freedom of information (FoI) request to all 153 English councils on their total number of children in care and care leavers, alongside the numbers who had a disability, broken down by type, receiving responses from 133 authorities. This revealed that:

• 11% of children in care were recorded as having a disability, the same proportion as in the general population, as measured by the government’s family resources survey.
• 13% of care leavers were recorded as disabled, below the 15.6% recorded by the Office for National Statistics for 16- to 24-year-olds nationally in 2020.

Self-reported disability rate double that recorded by councils

The figure for care leavers was half the rate recorded by Coram Voice for care leavers self-reporting a long-term health problem or disability (27%) through its Bright Spots research programme from 2017-24. This was based on responses from 8,245 care leavers across Britain, with the rate increasing from 22% in 2017-19 to 32% in 2023-24.

Coram Voice also found significant disparities between councils in reported rates of disability, which ranged from 3% to 32% for children in care and from 1% to 36% for care leavers.

For both groups, the most common types of disability recorded by councils were learning (35% of care leavers and 32% of children in care), autism (32% of care leavers and 31% of children in care) and ‘behaviour’ (31% of care leavers and 24% of children in care). Coram Voice said the latter category included ADHD.

The councils’ data did not include a mental health category, despite this being the second most common area of disability self-reported by care leavers in response to the Bright Spots research (20%), behind autism (21%).

Poorer outcomes for disabled care leavers

The Bright Spots research found disabled care leavers reported significantly worse outcomes on average than non-disabled counterparts across a range of areas:

• 12% said they hardly ever or never felt safe at home, compared with 6% of other care leavers.
• 35% always or often felt lonely, compared with 16% of other care leavers.
• 42% reported low wellbeing, compared with 24% of other care leavers.
• 29% said they found it difficult to cope financially, compared with 18%of other care leavers.

However, a workshop with over 100 leaving care practitioners and managers held by Coram Voice revealed significant issues in services’ response to young care leavers.

Practitioners ‘lack data and knowledge’ on disability

They acknowledged that services didn’t tend to record or ask young people their views on disability and that there was limited data and information on disability in leaving care services.

Staff reported gaps in knowledge, a lack of confidence in some areas and uncertainty about referral pathways and systems in relation to disability in leaving care teams, while there was a “disconnect” with adults’ services, eligibility for which was “unclear and fluid”.

This chimed with findings from Coram Voice’s advocacy service about disabled young people’s experience of transition, which included a lack of planning, failure to listen to the young person, frequent changes of staff, disputes between agencies about who funds what and a lack of suitable provision.

Disabled children in care and care leavers ‘invisible’

In conclusion, the charity said: “Our work exposes how invisible disabled children in care and care leavers are in our national statistics – underestimation and under-recording of disability means that individual and collective needs and experiences of disabled children in care and care leavers are not fully understood.

“Currently there is little information available to plan and monitor the effectiveness of support.”

Charity urges improved data and training

On the back of the report, it made 19 recommendations, including that councils:

• Support professionals, including social workers and personal assistants, to develop confidence, skills and knowledge of disability by providing training to address existing gaps,
  practice tools and opportunities to discuss issues in supervision.
• Record children and young people’s self-reported experiences of disability and long-term health conditions and use this to inform individual care plans and service development.
• Collate and review disability data regularly to effectively plan and monitor service delivery for children in care and care leavers, and provide team managers and practitioners with this information.
• Ensure services for children in care and care leavers are accessible and supportive of children and young people with disabilities, including by listening to young people about the state of existing provision.
• Provide disabled children and young people with access to advocacy to safeguard their rights.

It also called for the DfE to publish disability data already collected as part of its child in need census in its annual looked-after children and care leaver statistics, and urged government and research funding bodies to commission further studies to better understand the experience of disabled care experienced people and what works in supporting them.