CSC0019
Written Evidence Submitted by Sense
About Sense
Sense is a national disability charity that supports people with complex disabilities to be understood, connected, and valued. Sse supports children, young people, and adults in their home and in the community. Sense campaigns passionately for the rights of the people it serves and offers practical help and support to families and carers, including information and advice, short breaks, and family events.
Who does Sense support?
Sense supports people with complex disabilities including those who are deafblind. our research shows that there are 1.6 million people with complex disabilities living in the UK today; just over 318,000 of these are children. People with complex disabilities tend to have two or more of the following conditions: deaf or hearing impairment, blind or vision impairment, learning disability or autism. They may have other needs as well. These needs may be with a person from birth, or following illness or injury, or they may develop with age.
The individuals with complex disabilities we represent often require significant or constant care and support from family members. Many children with complex disabilities and their families rely on children’s social care support to live day to day. This could include personal care support, assistive technology, home adaptions or short break services.
Many of the people we support are deafblind, this includes individuals with congenital deafblindness and also those who are visually impaired or deaf or hard of hearing who then acquire an additional sensory impairment. As set out in the “Deafblind people: guidance for local authorities” guidance published by the Department of Health and Social Care, “a person is regarded as deafblind if their combined sight and hearing impairment cause difficulties with communication, access to information and mobility. This includes people with a progressive sight and hearing loss.”
There are over 450,000 deafblind people in the UK, and over 23,000 of these are children . Children who are deafblind often require very specialist and specific care needs from across the health, education, and social care sector. Deafblind children are often described as having multi-sensory impairment (MSI).
Sense services support children and families across the UK, including around 1400 with MSI. Our support helps children who are deafblind or who have complex disabilities access education, playgroups and holidays, so they have the same life experiences and life chances as everyone else. We deliver commissioned and charitable services across England, Wales and Northern Ireland including short breaks, information advice and support for families and specific services for siblings of disabled children.
How we have developed this response
As an organisation representing people with complex disabilities, it is vital to us that our response to policy proposals is informed by the experiences of the people we support. We work closely with our services and families we support to build our evidence base for change.
What are the specific experiences of disabled children or children with additional needs within children’s social care and ways to improve their experiences.
The need of social care for disabled children
Many children with complex disabilities and their families rely on social care support to live day to day. Disabled children and young people are eligible for social care support under several existing laws. Under part 3 of the Children’s Act of 1989 all disabled children are classified as ‘children in need’.
As ‘children in need’, disabled children are eligible for care assessments, and in combination with The Chronically Sick and Disabled Persons Act 1970, they should be able to access a range of services including;
• Personal care support, e.g getting up and ready for school.
• Education, at home, in mainstream or specialist schools.
• Recreational equipment and technology, e.g. a TV or assistive technology.
• Travel support, to and from school, respite, or a day centre.
• Home adaptations, e.g an accessible bathroom.
• Holidays, e.g financial support for the whole family to go on holiday.
• Temporary or permanent residential accommodation, this is the legal basis for short breaks and respite services, but it also recognises the need for residential accommodation in the case of complex needs that cannot be met at home.
Children with complex needs will need a combination of health and social care support to connect with the world around them.
However, not every disabled child is entitled to services as a result of being ‘in need’. There are 1,183,384 disabled children in England, but data from the Department for Education suggests that only 32,279 of them are designated as children in need as of the 31st March 2023.
The scale of the difference between the number of disabled children and the number of children in need on the grounds of disability is vast.
This suggests that many disabled children are not receiving the care and support they need, and are going without vital children’s social care services. This will have a significant impact on their ability to communicate, connect with the world around them, and achieve the outcomes they need to into adulthood.
Disabled Children’s experiences of children’s social care
• Disabled children and their families are not receiving the social care support they are legally entitled to.
• Too often other parts of the children’s social care system takes priority over disabled children’s services.
• Parents find the system threatening, stigmatizing and combative rather than supportive.
• Families of children with complex disabilities are left confused and ill-supported in navigating a complex social care system.
• Families of children with complex disabilities struggle to access the equipment, therapies and short breaks and respite care that they need.
Social care plays a vital role in supporting disabled children and their families to live fulfilling lives. Disabled children and families have a legal right to this support, but too often it is deprioritised in light of the other pressures that children’s social care faces. The children’s social care system has to accommodate both safeguarding/protection and support for families of disabled children.
The result of this means that too often disabled children’s services do not meet need and are often difficult for parents to access. Moreover, where support is provided, it is often only when families hit crisis point and at that point it is too little too late.
Families we support regularly tell us that they find the system threatening, stigmatizing and combative rather than supportive.
One family Sense has supported for a long time have faced a number of challenges caring for their disabled child. When they approached social care services for support, they described the assessment for support “like they were going through a trial”, instead of being assessed appropriately by specially trained staff. This caused a significant amount of stress for the entire family, at the same time as breaking down other community links that the family had, such as with Sense and other third sector organisations who they were reliant on for support.
This is sadly the experience of many families of disabled children. They are left confused and ill-supported in navigating the complex social care system. Sense’s family engagement research from 2022 found that:
• One than a third (35%) of families were reliant on Sense, or other third sector organisations, for information in relation to securing social care support for their disabled child.
• Nearly two thirds of parents (57%) were not able to access all the short breaks and respite services that they need.
• Only 15% of parents agreed that their child has access to all the social care support they need in their local area.
Sense is a member of the Disabled Children’s Partnership (DCP). A DCP survey from 2023 also found that:
• 1 in 5 parents said that their family received the support needed to enable their child to fulfil their potential.
• 1 in 7 said that their disabled child has the correct level of support from social care.
• 3 in 4 parent carers of disabled children said that they have had to give up employment, or their whole careers, due to the lack of social care support available.
This complex and unnavigable system has left families of disabled children struggling to access the equipment, therapies and short breaks and respite care that they are legally entitled too.
How to improve disabled children’s experiences
• Government should plug the year in funding gap of over £500m for statutory children’s social care services and continue to provide additional funding year on year.
• There also should be ring-fenced funding for local authority children’s social care budgets specifically targeted for disabled children.
• There needs to be further funding for respite and short breaks provision, building on the government’s Short Break Innovation Fund.
• Disabled children and their families must be given equal priority in social care as other children across all stages including planning, legislation and implementation.
• Families must be supported by government and local authorities to navigate the complex children’s social care system.
• We strongly support integration and joined up working across departments and with wider direction of policymaking particularly in regard to SEND and Social Care systems which are not working together currently.
• There must be investment into the social care workforce, with a specific focus on ensuring there are enough specialists to support children with complex disabilities and deafblindness.
The system needs more funding
The government’s Stable Homes, Built on Love reforms are a welcome focus on improving the system, but it does not go far enough to fit the funding gap in child social care.
In previous reforms, legislation has not been backed with sufficient scrutiny or financial support and has not improved the system for disabled children and their families. Such was the case for the Children and Families Act 2014. A Lords committee published a report on the act in 2022 which found that the reforms were well-intentioned but “a clear failure of implementation”. This has sadly been the case with many previous attempts of reform.
Any new reform must have sufficient funding to make sure that it can be implemented properly. The funding gap for disabled children’s social care keeps on increasing year on year.
In 2018, the funding gap was predicted to be £434m, but this has increased, to a £573 million funding gap in disabled children’s social care, and a £1.5 billion gap in disabled children’s NHS spending. The government must plug this gap with further funding for children’s social care. Otherwise, disabled children’s experiences of social care will not improve.
Currently, funding for disabled children comes out of the whole local authority budget. This often means services and support for children with complex disabilities are overlooked when local authorities are facing real-term budget cuts.
Funding for disabled children’s social care should be ring-fenced and separate from the funding for all children in need. The money needs to be planned for to ensure all services and need in that area can be met and then disabled children’s services would not be impacted by local authority overspend. This would help to ensure that services for disabled children are prioritised, planned for and always there when families need it most.
Funding for short breaks
In February 2022 the government announced its short break innovation fund. This included £30 million for the next three years to set up more than 10,000 additional short breaks.
The value of the fund is split over three years, £5m/£10m/£15m to scale as the capacity of the team and system grows.
We are pleased when the government launched this as we had been calling for it for many years. This will provide a much-needed boost for families who can access this additional support. However, there is no further funding commitment beyond 3 years and there have been no plans or announcements about whether the programme will continue beyond three years.
Short breaks services provide children with complex disabilities with the fun and enriching experiences that every child deserves. They also provide families of a disabled child or young person with a break from their caring responsibilities. They’re a vital lifeline for the wellbeing of the entire family.
It is crucial that there is a long-term funding solution to provide good short breaks services for all families of disabled children.
Families need more help to navigate the complex social care system
Currently, families of disabled children are confused and ill-supported in navigating the complex social care system.
Through Sense’s family engagement research, more than a third (35%) of families told us they were reliant on Sense, or other third sector organisations, for information in relation to securing support for their disabled child.
There is currently a national threshold for assessment of children’s social care needs – but thresholds for support vary between local areas. This is in contrast to adult social care, where the criteria for both assessment and support were unified under the Care Act 2014 and associated regulations. This means too often there is a postcode lottery of support available for families of disabled children.
Sense wants families of disabled children to be better supported by government, local authorities and service providers to navigate the children’s social care system. They must have access to the right information about the services that are available, they must be able to understand their legal entitlements to support and how they go about accessing this support. Local authorities should all equally support families through the process of securing provision.
Additionally, families must also have the right information at key transition points, including from early years settings upwards, and transitioning from children’s social care services to adult services.
Families are often having to navigate complex social care, education and health landscapes with little central co-ordination. We would like to see each local authority having a single point of contact that families can go to raise issues, gather information and be supported. Too often families Sense support tell us they are pushed around to different departments.
One parent told us that they receive support from over 30 different departments and service providers, and trying to circumnavigate this support, or raise issues was impossible.
It is also important that local authorities and government keep up-to-date and accessible information displayed clearly online. Families Sense have spoken to have told us of the difficultly of accessing the correct information through local authority sites. Government should regularly check and hold local authorities to account when their websites are not displaying relevant or up-to-date information for parents to access.
The recent announcement of a review by the Law Commission into the legal framework for social care presents an opportunity to improve the complex nature of the current law that families rely on. It is vital that it has a strong focus on the laws that impact children with complex disabilities. It also needs to be produced in full partnership with parents of children with complex disabilities and disabled young people themselves.
Joined Up Working with SEND and further reforms
The Department for Education (DfE) are still currently working on major educational reforms as announced in their green paper entitled “Special Educational Needs and Disability (SEND) review: right support, right place, right time”. Across both that and the government children’s social care implementation plan, there is some crossover and references between each. We strongly support integration and joined up working across departments and with wider direction of policymaking.
However, the proposals and statements in both are too vague, and leave the risk that disabled children will once again fall through the cracks of missing legislation. It is crucial, that government make clear how they will both work effectively together to meet the needs of children with complex disabilities. The governments needs to commit further detail on how these proposals will work together.
Specialist social care support for deafblind children
Children’s social care must provide access to specialists for disabled children and their families. This support should be holistic and tailored to each child’s needs.
The Deafblind Guidance published by the Department for Health and Social Care makes clear, that when deafblind children are assessed, this should be carried out by someone who is specifically trained to understand their needs as a child who is deafblind.
We hear from families that Sense supports that too often deafblind children are assessed by someone who understands the needs of a deaf child and a separate person who understands the needs of a blind child. This approach doesn't take into account the interaction of the two sensory impairments, as this takes specialist skill and expertise.
MSI practitioners must be consulted throughout the assessment process of a deafblind child, so that the right communication support can be identified and provided. Specialist support can also help to bridge the gap to support social workers for children with complex disabilities, ensuring provision meets their needs.
Children’s social care must deliver support that meets disabled children’s needs. Not only does this mean being able to access the equipment and aids they require, but they must also be able to access specialist services at the quantity and quality of provision they need.
Holistic support for children and families
Support must be delivered at the right time. Early intervention is crucial when it comes to supporting children with complex disabilities. Bringing social care services in early to build relationships with parents to deliver support from the earliest possible opportunity is crucial to get the right support for the child, but also to build trust and a feeling that the system is there to help.
This is particularly relevant around equipment, as we know of many families whose child has been assessed for equipment but have grown out of it by the time it is delivered because the process was lengthy and time consuming. We also know of families who have not been able to access vital equipment from an early enough age because thresholds for support have been implemented by Local Authorities.
In addition to statutory services, there should be a focus on early intervention. Early intervention services provide better outcomes for children and young people and their families and can also reduce the demand on other emergency services such as mental health services.
Children’s social care for disabled children must focus on promoting the wellbeing of the child and their family. This means ensuring families have equal access to their local community, leisure activities and other core parts of families as their non-disabled peers do. It also means ensuring children always have access to communication equipment and tools they need to interact with the world around them. Promoting wellbeing will lead to the family being better connected and reduce reliance on other crisis point services.
Transition to adulthood
Families Sense support often report issues around transitions between children’s social care services and adult social care services. This is also true where a young person receives services through their Education Health and Care plan.
January 2024