Applying for DLA for a Child with SMS

Disability Living Allowance (DLA) is a benefit that helps with the extra costs of caring for a child under 16 who has a disability or health condition. It isn’t based on income, savings, or whether a parent works. Instead, it looks at the additional care, supervision, and support a child needs compared with other children of the same age.

This guide explains what DLA is, how it works, and what families of children with Smith-Magenis syndrome (SMS) may experience during the process.

What DLA Covers

DLA has two parts:

1. Care Component

This focuses on day-to-day care and supervision needs.
Rates:

• Lowest rate – help for some of the day
• Middle rate – frequent help or supervision during the day OR help at night
• Highest rate – help or supervision throughout the day AND night, or the child is terminally ill

2. Mobility Component

This assesses a child’s ability to move around safely outdoors.
Rates:

• Lower rate (from age 5) – the child needs guidance or supervision outdoors to stay safe
• Higher rate (from age 3) – the child has severe physical or cognitive difficulties that affect mobility, safety, or the ability to plan and follow journeys

A child may receive one or both components depending on their needs.

Who Can Get DLA?

A child may qualify if they:

• Are under 16
• Live in the UK
• Have had extra care or mobility needs for at least 3 months, and these needs are expected to last at least 6 months

DLA is not means-tested, so a family’s income or savings do not affect eligibility.

When DLA Starts

DLA usually starts from the date your claim is submitted (or the date you request the form, if you return it on time). Payments are made every four weeks.

How to Apply

You can apply online or request a printed form from the DWP. The application is detailed and asks you to describe how your child’s needs differ from other children of the same age.

You may need to provide:

• A full description of care needs, supervision, and risks
• Examples of day-to-day challenges
• Reports from professionals (school, GP, paediatrician, therapists)
• Medication lists and medical history
• Information about sleep patterns, behaviour, communication, and mobility

Keeping notes over a week or two can help you give clear examples of the support you provide during both daytime and night-time.

A strong DLA application is built on detailed information about your child’s daily needs, backed up with supporting evidence. You don’t need a formal diagnosis to apply, but including a letter of diagnosis, clinic letters, paediatric reports, therapy notes, or any other medical documents can help the DWP understand your child’s condition.

Whilst not required as part of the application process, additional supporting evidence can strengthen your claim. Schools can provide SEN/EHCP reports, behaviour logs, or communication profiles, and social care may offer assessments, respite plans, or safeguarding documents if relevant. Remember that the person reviewing your application doesn’t know your child or their condition, so the more specific and comprehensive your examples, the clearer the picture of the support your child needs both day and night.

Becoming a DWP Appointee

Often parents or carers will need to act as a DWP appointee, which means they are legally responsible for managing a child’s benefit claim and communicating with the DWP on their behalf. This is common for children with SMS who are unable to understand or manage their own application due to learning disability, communication difficulties, or safety risks. The appointee has permission to complete forms, speak to the DWP, and receive correspondence about the claim. You can read more about what an appointee is and how to become one in our detailed guide: Becoming a DWP Appointee.

How DLA might relate to Smith-Magenis Syndrome

Children with SMS usually have a range of needs that can be clearly evidenced in a DLA application. These often include:

• Disrupted sleep cycles and frequent night waking, resulting in significant night-time supervision.
• Hyperactivity, impulsivity, and aggressive or self-injurious behaviours, meaning close supervision is needed throughout the day.
• Learning disability, typically mild to moderate, although the spectrum includes individuals with very low and severe learning disabilities.
• Communication differences that affect understanding, safety awareness, routines, and emotional regulation.
• Daily living support, including dressing. Many children with SMS need step-by-step guidance or full help every morning because of coordination difficulties, sensory needs, impulsivity, or reduced independence.
• Feeding, toileting, or medical support, depending on their needs.
• High safety risks, including absconding, climbing, sudden impulsive actions, or little to no danger awareness.
• Complex health concerns, such as cardiac conditions, renal issues, scoliosis, and other medical complications.
• Sight and hearing impairments, which can affect communication, mobility, and safety.

For some children with SMS, there are extra costs linked to behaviours such as ripping or damaging clothes, bedding, or other household items. This can happen because of sensory needs, impulsivity, frustration, or anxiety. While DLA is not awarded specifically for financial costs, these examples help demonstrate the level of supervision, support, and intervention a child needs compared with another child of the same age. If clothing or household damage is frequent or linked to behaviour or sensory regulation, you can include this in the application as part of the pattern of additional care needs. Evidence might include notes from school, behaviour logs, or examples from home that show how often this happens and the level of support needed to manage it.

Mobility component considerations for SMS

Many children with SMS qualify for the mobility component due to:

• Very limited environmental awareness, including significant risks around roads, water, and unfamiliar places.
• Impulsivity and sudden movements, which make independent walking unsafe.
• Absconding or bolting, where the child may run off without warning.
• Low danger awareness, often requiring close handholding or physical supervision outdoors.
• Difficulties planning and following journeys, common in neurodevelopmental conditions.
• Complex health issues that affect stamina or physical mobility.
• Vision or hearing impairments, impacting navigation and safety.

Depending on age and severity, children with SMS may qualify for either the lower or higher rate.

Including the SMS Foundation’s Statement on Smith-Magenis Syndrome with your application can help give a clear and accurate overview of the condition.

What to Expect After You Apply

• The DWP may ask for more information.
• Decisions take several weeks.
• Awards may be fixed-term (e.g., 2–5 years) or longer, depending on needs.
• If your claim is unsuccessful, you can request a Mandatory Reconsideration and appeal afterwards if needed.

How Often DLA Is Reassessed

DLA awards can be short or long term, depending on your child’s needs and medical situation. Many families receive fixed-term awards, often lasting between two and five years, with a new form required when the award is due to end. Others may receive a longer or indefinite award, although these can still be reviewed if the DWP needs updated information. Reassessments usually involve completing a fresh claim form, and it’s important to provide up-to-date examples and evidence as your child’s needs change over time.

When DLA Ends

DLA stops:

• When your child turns 16, or
• If the DWP ends the award after a review.

At 16, young people move to Personal Independence Payment (PIP). The DWP will normally contact you before their 16th birthday to begin this transition. For most young people with SMS, the DWP will expect an appointee to manage the claim, usually a parent or carer. Read our article ‘Understanding the DLA to PIP Transition‘ to learn more about moving across to PIP.

Summary

DLA helps families meet the extra costs of raising a child with SMS, whose needs often require continuous support, increased supervision, and additional care day and night. A detailed, example-rich application supported by professional evidence gives the DWP a clearer understanding of the child’s needs and helps families receive the correct level of support.