Understanding the Move from DLA to PIP

Many young people with SMS will move from Disability Living Allowance (DLA) to Personal Independence Payment (PIP) as they turn 16. This change can feel overwhelming, but understanding the steps involved can help you prepare and feel more confident about the process.

What is PIP?

Personal Independence Payment (PIP) is a benefit for people aged 16 and over who need extra support with daily living or mobility. It replaces DLA once a young person reaches adulthood. PIP looks at how a condition affects day-to-day functioning, not just the diagnosis.

PIP has two parts:

• Daily Living – for personal care, communication, planning, safety, and managing health needs
• Mobility – for travelling, moving around, and staying safe outside the home

Each part can be paid at either a standard or enhanced rate depending on the level of support required.

Why does DLA change to PIP?

DLA is a children’s benefit. When a young person approaches 16, the Department for Work and Pensions (DWP) reassesses them under adult PIP rules. These rules look closely at:

• the support needed to stay safe
• impulsive or unpredictable behaviour
• communication needs
• sleep patterns and night-time support
• supervision throughout the day
• sensory and emotional regulation difficulties

Families living with SMS often find it helpful to describe needs in real-life situations rather than broad statements.

When does the change happen?

The DWP normally sends a letter shortly before the young person’s 16th birthday inviting them to apply for PIP. DLA continues during this time as long as you respond by the deadline.
If you don’t apply for PIP when invited, DLA will stop.

How to apply for PIP

1. The invitation letter

The process formally begins when you receive the DWP’s letter asking the young person to claim PIP. This letter includes:

• instructions on what to do next
• a phone number to call to start the claim
• guidance for appointees if the young person cannot manage their own claim

You cannot skip this step — the PIP2 form is only issued after this call is completed.

2. Starting the claim (PIP1)

You must call the number provided to open the claim. During the call, the DWP will ask for:

• the young person’s National Insurance number
• their DLA claim details
• GP and education setting information
• contact details for the young person or their appointee

A PIP2 form will be sent afterwards.

3. The PIP2 form (“How your disability affects you”)

This form is the most important part of the application. You’ll need to explain:

• what support the young person needs
• how long tasks take and what can go wrong
• risks and safety concerns
• examples of impulsivity, behaviour difficulties, or emotional distress
• night-time needs and sleep disruption

You may be asked to describe your young person’s condition as part of the PIP application. If you need a clear summary of SMS to include with the form, we’ve created a downloadable statement that explains the key characteristics of SMS and how it affects daily life. You can copy and paste this into your application or attach it as supporting evidence. Download the SMS statement here.

Evidence can include:

• EHCPs
• educational reports
• behaviour or risk plans
• sleep assessments
• letters from specialists or social workers
• social care involvement documents

4. The assessment

A young person may be asked to complete an assessment, either by phone or in person. However, for the majority of individuals with SMS who have a learning disability, the official DWP appointee can carry out the assessment on their behalf. If the young person cannot meaningfully take part, the assessor will direct questions to the parent or carer and rely on their explanations of the young person’s daily needs, risks, and challenges.

If the young person has an official DWP appointee:

• The assessment is usually conducted directly with the parent or carer.
• The young person does not need to take part if they cannot understand the process or would become distressed.

If the young person is not under an appointeeship:

• The assessor will still involve the parent or carer.
• The young person may only need to be present briefly, if at all.
• The assessor will rely primarily on the parent or carer’s information.

Reasonable adjustments you can request:

• The assessment to be carried out entirely with the parent or carer
• Breaks if the young person becomes anxious or distressed
• A slower pace or simplified questions
• A telephone assessment if this is easier
• A home assessment if attending in person is not suitable

For many families, the assessment becomes a conversation with the parent or carer. This does not negatively affect the claim.

5. The decision

The DWP will send a decision letter explaining:

• the outcome of the claim
• the rate awarded
• how long the award is for

If you disagree with the decision, you can request a mandatory reconsideration and appeal if needed.

What happens after PIP is awarded?

Once PIP is awarded, DLA stops. Receiving PIP can also open access to additional support such as:

• Carer’s Allowance
• Blue Badge eligibility
• Disabled Person’s Bus Pass
• Adjusted Universal Credit rates

Reassurance for families

This transition happens for every young person on DLA. Families living with SMS often have strong evidence of support needs, especially around safety, impulsivity, sleep, and emotional regulation. Clear examples and good documentation help show the DWP the reality of everyday life.

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