Understanding the Latest Changes to PIP and Their Impact on Neurodiverse Individuals

The UK government has recently announced significant changes to the Personal Independence Payment (PIP) system, which will affect many neurodiverse individuals. This blog aims to explain these changes in simple terms, why they are happening, how they might impact you, and what actions are being taken to prevent these changes from causing undue hardship.

What is Changing?

The government has introduced stricter criteria for PIP eligibility. Previously, claimants needed to score points across various daily living and mobility activities to qualify for PIP. Now, claimants must score at least 4 points in a single daily living activity to qualify[1]. This change is expected to affect around 800,000 people, with many losing their daily living component or PIP entirely[1].

Additionally, the Department for Work and Pensions (DWP) is reviewing the eligibility of 87 conditions, primarily musculoskeletal disorders, which could be excluded from PIP support[2]. This means that individuals with these conditions may no longer qualify for PIP, significantly impacting their financial support.

Why is it Changing?

The primary reason for these changes is to reduce government spending on disability benefits. The government argues that the new criteria will ensure that PIP is targeted at those with the highest needs[2]. However, critics argue that these changes do not adequately consider the unique challenges faced by neurodiverse individuals and could lead to increased financial strain and reduced support[1].

How Will This Impact Neurodiverse Individuals?

Neurodiverse individuals, such as those with autism, ADHD, or other neurological conditions, may struggle to meet the new criteria due to the nature of their conditions. The stricter eligibility requirements could mean that many neurodiverse individuals will lose their PIP support, which they rely on to manage daily living expenses and mobility needs[1].

The financial impact could be significant, with some individuals losing up to £6,300 per year in support[3]. This loss of income could lead to increased financial hardship, making it difficult for neurodiverse individuals to afford essential services and support.

What Are the Points in Daily Living Activities?

To qualify for PIP under the new criteria, claimants must score points in one of the daily living activities. Here are the activities and how points are allocated:

1. Preparing Food:
   • 0 Points: Can prepare and cook a simple meal unaided.
   • 2 Points: Needs to use an aid or appliance to be able to either prepare or cook a simple meal.
   • 2 Points: Needs prompting to be able to either prepare or cook a simple meal.
   • 4 Points: Needs supervision or assistance to either prepare or cook a simple meal.
   • 8 Points: Cannot prepare and cook food.
     
2. Taking Nutrition:
   • 0 Points: Can take nutrition unaided.
   • 2 Points: Needs to use an aid or appliance to be able to take nutrition; or supervision to be able to take nutrition; or assistance to be able to cut up food.
   • 2 Points: Needs a therapeutic source to be able to take nutrition.
   • 4 Points: Needs prompting to be able to take nutrition.
   • 6 Points: Needs assistance to be able to manage a therapeutic source to take nutrition.
   • 10 Points: Cannot convey food and drink to their mouth and needs another person to do so.
     
3. Managing Therapy or Monitoring a Health Condition:
   • 0 Points: Does not receive medication or therapy or need to monitor a health condition; or can manage medication or therapy or monitor a health condition unaided.
   • 1 Point: Needs any one or more of the following: to use an aid or appliance to be able to manage medication; supervision, prompting or assistance to be able to manage medication; supervision, prompting or assistance to be able to monitor a health condition.
   • 2 Points: Needs supervision, prompting or assistance to be able to manage therapy that takes no more than 3.5 hours a week.
   • 4 Points: Needs supervision, prompting or assistance to be able to manage therapy that takes more than 3.5 but no more than 7 hours a week.
   • 6 Points: Needs supervision, prompting or assistance to be able to manage therapy that takes more than 7 but no more than 14 hours a week.
   • 8 Points: Needs supervision, prompting or assistance to be able to manage therapy that takes more than 14 hours a week.
     
4. Washing and Bathing:
   • 0 Points: Can wash and bathe unaided.
   • 2 Points: Needs to use an aid or appliance to be able to wash or bathe.
   • 2 Points: Needs supervision or prompting to be able to wash or bathe.
   • 2 Points: Needs assistance to be able to wash either their hair or body below the waist.
   • 3 Points: Needs assistance to be able to get in or out of a bath or shower.
   • 4 Points: Needs assistance to be able to wash their body between the shoulders and waist.
   • 8 Points: Cannot wash and bathe at all and needs another person to wash their entire body.
     
5. Managing Toilet Needs or Incontinence:
   • 0 Points: Can manage toilet needs or incontinence unaided.
   • 2 Points: Needs to use an aid or appliance to be able to manage toilet needs or incontinence.
   • 2 Points: Needs supervision or prompting to be able to manage toilet needs.
   • 4 Points: Needs assistance to be able to manage toilet needs.
   • 6 Points: Needs assistance to be able to manage incontinence of both bladder and bowel.
   • 8 Points: Cannot manage toilet needs or incontinence at all and needs another person to manage these needs.
     
6. Dressing and Undressing:
   • 0 Points: Can dress and undress unaided.
   • 2 Points: Needs to use an aid or appliance to be able to dress or undress.
   • 2 Points: Needs prompting or assistance to be able to select appropriate clothing.
   • 2 Points: Needs assistance to be able to dress or undress their lower body.
   • 4 Points: Needs assistance to be able to dress or undress their upper body.
   • 8 Points: Cannot dress or undress at all and needs another person to dress or undress them.
     
7. Communicating Verbally:
   • 0 Points: Can express and understand verbal information unaided.
   • 2 Points: Needs to use an aid or appliance to be able to speak or hear.
   • 4 Points: Needs communication support to be able to express or understand complex verbal information.
   • 8 Points: Needs communication support to be able to express or understand basic verbal information.
   • 12 Points: Cannot express or understand verbal information at all even with communication support.
     
8. Reading and Understanding Signs, Symbols, and Words:
   • 0 Points: Can read and understand basic and complex written information either unaided or using spectacles or contact lenses.
   • 2 Points: Needs to use an aid or appliance, other than spectacles or contact lenses, to be able to read or understand either basic or complex written information.
   • 2 Points: Needs prompting to be able to read or understand complex written information.
   • 4 Points: Needs prompting to be able to read or understand basic written information.
   • 8 Points: Cannot read or understand signs, symbols, or words at all.

Timeline for These Changes

The new PIP rules are set to take effect in November 2026. From this date, all new PIP applicants will be assessed under the revised points system. Existing claimants will gradually be reassessed under the new criteria, depending on their scheduled review dates.

What Can You Do?

If you are affected by these changes, there are several steps you can take:

1. Seek Advice: Contact organisations that provide support for neurodiverse individuals, such as the National Autistic Society or ADHD Foundation. They can offer advice on how to navigate the new PIP criteria and support you in making a claim.
2. Appeal Decisions: If your PIP claim is denied or reduced, you have the right to appeal the decision. Seek legal advice or support from disability advocacy groups to help you with the appeals process.
3. Stay Informed: Keep up to date with the latest news and developments regarding PIP changes. This will help you understand your rights and any further changes that may affect you.

Actions Being Taken to Prevent Hardship

There has been significant criticism and opposition to these changes from various organisations and individuals. Disability rights groups and legal experts are warning that the new criteria could face significant legal challenges, as they may disproportionately affect those with particular disabilities, especially mental health conditions.

Campaigns and petitions are being organised to urge the government to reconsider these changes. Some MPs and disability advocates are lobbying for a more inclusive approach that considers the unique needs of neurodiverse individuals. You can get involved in advocacy efforts by joining campaigns, signing petitions, and contacting your local MP to express your concerns.

In conclusion, while the changes to PIP are aimed at reducing government spending, they could have a profound impact on neurodiverse individuals. It is crucial to stay informed, seek support, and take action if you are affected by these changes. Together, we can work towards a fairer system that supports all individuals with disabilities.

References:

1:https://assets.ctfassets.net/vms0u05139aw/pip_descriptors.pdf/93820be60dcc6420191292ed56e2c95f/pip_descriptors.pdf

2: https://www.benefitsandwork.co.uk/personal-independence-payment-pip/pip-points-system

3: https://www.advicenow.org.uk/get-help/benefits/personal-independence-payment-pip/personal-independence-payment-pip-activities