Disabled children and their families

Our report tells the experiences of 21 families with disabled children up to the age of 5. We follow their journey as their child transitions from getting diagnosed with an impairment or condition.

In this report we explore:

• inconsistent support during diagnosis
• practical and emotional support for parents
• benefits and extra costs
• accessible places and services
• nursery support
• Education Health and Care Plan and starting school

The early years of a child's life are crucial to their development and affect their opportunities to get the best start in life.

Our research shows that life is harder than it should be for parents with a disabled child. Their time, resilience, finances, and choices available are all affected. This will likely have an effect on their child's development.

Inconsistent support during diagnosis

Diagnosis can be a challenging and emotional time for parents.

Unfortunately, many parents reported that the quality of support they got was inconsistent. The level of support varied depending on the time of diagnosis. Family support needs were often unavailable or inadequate.

The best support was given when the child was diagnosed after birth or within the first year. In these cases, getting appropriate and personalised support from the NHS was helpful for parents. Particularly for practical care and emotional support needs.

Support for parents

Some parents looked for support and advice from other families, or support organisations. Either using social media or organised face-to-face events, such as:

• forums
• group meet ups
• disabled children’s play groups

A minority of parents also turned to counselling to improve their emotional resilience and wellbeing. These sessions did provide parents with support through important transition points. Helping them with accepting their child’s condition and developing coping strategies.

Emotional support

The transition period and extra care responsibilities can put pressure on parents' emotional resilience.

Support from family and friends, therapy sessions, and meeting parents in a similar situation can be important to parents during this time. But, these types of support may not meet all the parent’s needs because they are:

• informal
• require the parents to pay for them, and
• can be hard to keep up because of time constraints

Benefits and supportive funding

Parents were positive about the support they received from:

• charities
• local health professionals, and
• other disabled families with experience of benefit applications

All parents found benefit payments and grants useful, once awarded. Families spent these funds on the needs of their disabled children and the family.

Extra costs of raising a disabled child

Besides the additional health needs, families had to spend additional money on:

• increased consumption, such as travel expenses for medical appointments
• special equipment, such as sensory toys
• essential home adaptations
• paying for services that were not being provided, such as therapies

Disability Living Allowance can be an important source of support for these additional costs, but the application process is complicated and can cause anxiety for parents.

Accessible places and services

Parents had difficulty finding accessible places and services due to the limited number available. Accessible approaches can make a huge difference to disabled children and their families.

In these limited cases, parent’s experiences have been positive. Particularly for playgrounds and soft play areas.

Parents highlighted good examples of accessible play facilities, like:

• outdoor playgrounds or indoor play centres with wheelchair and disability friendly apparatus
• sensory play areas that provide a quiet break
• adapted supermarket trolleys and autism packs for use while shopping. For example, sensory toys and ear defenders
• schemes to improve the experience for families with disabled children. For example, fast track queues and supportive engagement with the family

Limitation of choice

Parents want their child to have positive experiences during their early years. This influences their search when looking for Schools and leisure facilities.

The restriction of choice often leads parents to choose disability friendly places over others. But this choice is likely to reinforce exclusion, as the disabled child is not able to socialise with their non-disabled peers. Resulting in reduced development opportunities for the child.

Nursery support

Parents liked the support they got for their disabled child from nursery staff and facilities. Parents felt confident their children were getting the best start in life.

They highlighted nurseries that were open, welcoming, accessible, and designed for disabled children. They gave many examples of good practice, such as:

• being flexible to cater for learning and disability support
• implementing adjustments for disabled children. Such as quiet areas and adapted play areas and apparatus

Education Health and Care Plans (EHCP) and starting school

Parents felt that an EHCP was important for disabled children, helping them with making progress at school. When an EHCP was not established, it could cause serious issues for the child and stress for parents.

Parents highlighted where nurseries led the EHCP, the experience was much better, and with a smoother transition. Good coordination and input by professionals meant plans were appropriate and timely.

Delays, a long and emotionally draining application process, with poor support from local authorities and EHCP panels, often led to late plans for children starting school. A few parents reported this had affected their choice of school for the child.

Unfortunately, the positive experiences were not common for disabled children and their families. Many parents reported a lack of statutory support, advice and practical care for their child. And a lack of emotional support for them. Families also faced barriers in their local communities and wider society.