Foster carers can make the difference between thriving or surviving for the children in their care, writes Emma Fincham.
Too often, children in care with disabilities are not being provided with adequate local support and services, despite the best efforts of their foster carers. Reasons for this are revealed in recent research* which discovered a woeful lack of accurate reporting. Inconsistencies in how disability is defined across local authorities, with significant variation in the percentage of children in care who were recorded as having a disability in a local authority, ranging from 3% in the lowest to 32% in the highest.
For a child or young person in care, if the local definition and associated understanding of your disability reflects your lived reality, this could be the difference between receiving essential specialist support or not. Foster carers frequently report their astonishment that children with similar needs will receive a greatly different provision depending on the region they live in, local policy and practice and, crucially, the willingness of the whole team around the child to constantly champion their rights to live a full and aspirational childhood.
According to the research, the percentage of young people self-reporting a disability or long-term health condition is rising over time. It was 22% in 2017 and rose to 32% in 2023. This rise underlines the urgency for the fostering sector to understand the implications for this cohort of young people and specifically how their foster carers need to be supported.
Foster carers who choose to care for children and young people with disabilities, additional needs or neurodiversity can feel deskilled at the point the child moves into their home. The medical terms, treatment options, specialist teams, equipment and adaptations is just the beginning of this unfamiliarity. Fortunately, these foster carers tend to be open to learning and crucially they are often some of the most passionate and tenacious advocates you will ever meet. These additional challenges do not perturb them. The foster carers I’ve worked alongside, caring for children with extra needs, demonstrate an eagerness to develop an in-depth awareness. They become experts in the condition and its challenges. They champion the unique rights and needs of the child with tenacity and compassion, steeling themselves to advocate at every juncture. This knowledge equips the foster carer to navigate unfamiliar microsystems, and this can frequently make the difference between the child in their care thriving or surviving.
I know foster carers who explained how they’d hired a specialist beach wheelchair so that their foster child could still attend his school residential. He was only allowed to go for one night, and the foster carers had to go and stay in a separate hotel nearby. They could see it was such a great bit of equipment and so hard to get hold of that they decided to buy one, at a cost of £6,000. They thought about fundraising because social services were unable to cover the cost. The carers emailed the team around the child, informing them about the fundraiser, but received no reply, so they went ahead with the fundraiser. They then received a call from the supervising social worker to say they needed to stop immediately, stating foster carers are not allowed to fundraise for a foster child. Two thirds of the funds had already been donated. The foster carers’ frustration was understandable, as there seems to be no policy regarding this. The parents were clearly in support of the plan. The young person wasn’t included in the conversation about how to make everyday things like going to the beach accessible for him. In times where resources and services are stretched beyond capacity, fostering services must be able to find creative ways to work through rules and regulations so that the result leads to enhanced family membership experiences for a child in care.
Conversely, another foster carer reported that they managed to get an attendant-controlled powered wheelchair fully funded from one charity, an Innowalk through fundraising from three charities and for the same child they raised funds for Hippotherapy (therapeutic horse riding) via a local charity. One foster carer, Maggie, said %%It’s hard work and we had several knock-backs but it’s worth it in the end. I’m passionate about getting the right equipment to help children progress and develop%%. In this instance the social worker helped with applying to charities, but the foster carer did most of the fundraising as they had more information on the health conditions and the specific needs. This shows that fundraising for a child in care can be successful and supported by the fostering service. Another example of this was shared with a carer who explained that the venue allocated for the child to spend time with their birth parents was shamefully ill equipped to meet their physical needs. Therefore, this precious time with family was hugely limited. This created a disappointing and potentially unsafe experience for the child.
In my experience, foster carers are vigilant at all times, and alert to dangers in the same way as the majority of parents, but they have to be extra alert due to additional layers of responsibility of caring for a child who is not their own. For foster carers caring for a child with disabilities, they experience yet more hurdles where they need to be vigilant. The child and local authority will benefit from this unwavering commitment. Respectful working would demand that these carers are proactively included in problem solving and decision making, but too often this is far from the case. One foster carer told me about a meeting that was to consider options for adaptations to be made to their home, because they are caring for a child who uses a wheelchair and has significant medical needs. The foster carers were not invited to this meeting about major changes to their home.
Assessment, diagnosis and eligibility are important to access disability and health services. Some young people have ongoing care needs that are not identified, and they struggle with the transition to adult services. There is another group of young people who do not meet thresholds, but whose additional support needs are not being met by current services.
Foster carers feel acute frustration if the children they care for do not meet thresholds, and when services are withheld. Equally, foster carers caring for children who do meet thresholds describe waiting years for provision that has been assessed as essential to enhance the child’s quality of life.
We listen carefully to foster carers. They have a highly developed and compassionate understanding of the unique needs of the child. By recognising their specially informed position and supporting them, invariably the children in their care will have the potential for an improved quality of life, in their home, school and on a school trip or holiday with the foster family.