Hi all,
It's a long one I'm sorry but honestly DLA is confusing.
I've filled the forms out, I have a supporting letter from nursery and have provided a sleep diary.
Along side the forms and other pieces of information I've wrote out a letter (see below) just to support the form and give more detail - is this too much too send or should I leave it out?
To Whom It May Concern,
I am writing in support of my application for Disability Living Allowance (DLA) for my two-year-old child. My child requires significantly more care and supervision than most children their age due to developmental delays, sensory challenges, and associated behaviors. Below, I have outlined their specific care needs during both the day and night, with supporting documentation provided.
Developmental History and Referrals
From infancy, my child demonstrated delays in key milestones. Until they were one year old, they struggled to hold their head up, sit, crawl, or walk. With the help of community pediatric services and physiotherapy, progress has been made, but ongoing concerns remain regarding their overall development.
At their two-year check, health professionals raised concerns about potential autism and suspected regression. They have since been referred to the following services for further support:
Community pediatric services
Speech and language therapy
Specialist teaching services
Portage
A sleep clinic (due to significant sleep challenges)
Additionally, an older sibling has a diagnosis of autism, further highlighting the likelihood of a similar diagnosis for my child.
Daytime Care Needs
My child’s care needs throughout the day far exceed those of a typical two-year-old. Below are the main challenges:
Communication Barriers:
My child has minimal speech and primarily uses echolalia. They can sing rhymes or label objects but are unable to express their needs, feelings, or wants.
They do not point, gesture, or use other methods of communication, making it difficult to understand them, which often leads to distress when their needs are not quickly met.
They require constant adult intervention to interpret their behaviors and provide emotional reassurance.
Social Interaction and Play:
My child struggles to engage in typical play and prefers solitary activities. While they may play alongside other children, they do not interact meaningfully.
Their attention span is fleeting, requiring adults to constantly redirect and support them.
Emotional Regulation:
They experience frequent and intense meltdowns, often lasting up to 45 minutes. These can be triggered by changes in routine, transitions, or even without clear cause.
During meltdowns, they may engage in self-harm (e.g., headbanging, scratching) and need 1:1 supervision to prevent injury and provide calming strategies.
These episodes require substantial time, patience, and hands-on support to manage safely.
Personal Care:
My child is still in nappies and shows no understanding of toileting routines. They often resist nappy changes, becoming highly distressed and making the process take 20-30 minutes or longer.
Dressing and undressing also cause significant distress, requiring additional time and careful handling to complete.
Safety Concerns:
My child has no awareness of danger. They frequently run at full speed into furniture, walls, or other obstacles and often fall due to clumsiness and poor coordination.
When outside, they will bolt unpredictably or approach strangers, requiring constant physical supervision. Prams or reins are essential, though reins often cause extreme distress, limiting their use.
Pica and Sensory Needs:
My child has a tendency to put non-food items in their mouth, posing a choking risk. They require close supervision during meals and playtimes to ensure their safety.
Their sensory needs also lead to repetitive behaviors, such as hand flapping, rocking, walking in circles with their eyes closed, and holding lights close to their eyes.
Nighttime Care Needs
My child’s sleep difficulties are a significant challenge, requiring constant attention and hands-on care throughout the night:
Difficulty Settling:
Despite a consistent bedtime routine, my child rarely settles before midnight, even when naps are managed during the day. They become highly distressed during bedtime routines, often arching their back, screaming, and resisting being placed in their cot.
Frequent Waking:
My child wakes multiple times each night—typically every 45 minutes to 1.5 hours. Each waking is accompanied by intense distress, screaming, and physical behaviors such as back arching, banging their head, or vomiting due to the severity of their reactions.
Settling them back to sleep requires prolonged hands-on care, including rocking, soothing, and monitoring to ensure their safety.
Total Sleep Time:
On most nights, they sleep only 3-5 hours in total, broken into short intervals. This severely impacts their well-being and necessitates near-constant supervision and intervention from an adult throughout the night.
Current Support and Professional Input
Their nursery has provided a letter confirming that they require 1:1 support throughout the day due to their need for constant supervision, help with transitions, and safety concerns. They also spend much of their time in an intervention room with a trained SENCO. Referrals to community pediatric services, speech and language therapy, Portage, and the sleep clinic are in place to address their ongoing needs.
Summary of Care Needs
My child’s care needs are comparable to those of a much younger child, and they require:
Constant 1:1 supervision during the day to manage their safety, provide emotional support, and assist with communication.
Hands-on interventions for personal care tasks such as nappy changes and dressing.
Prolonged and repeated nighttime care due to their frequent wakings and distress.
These needs place a significant demand on their caregivers, far beyond what is typical for their age.