People who have long term ill-health or disability costs, and live in England, Wales or Northern Ireland, can apply for a Personal Independence Payment or PIP.

The amount of PIP someone gets depends on how their condition affects them, not the condition itself. It is not means-tested, so it does not matter how much income or savings people have.

More about PIP >

• PIP started more than 10 years ago. A lot has changed since then.
• More and more people need help from PIP every year.
• More people are having problems with their mental health.
• It costs government more money to give people benefits.
• If there are changes to PIP, it could mean some people get less money and some people get more money. Some people might not get PIP at all.

In April 2024, the Government published a Green Paper Consultation. A Green Paper sets out for discussion, proposals which are still at an early stage. This paper asked:

• How can the PIP system give the right support to the people who need it most?
• What are people’s needs and what things do they have to pay for because of their health condition?
• What are the best ways to support people to live as independently as possible?

The Department for Work and Pensions gave four ideas as to how the current system might be changed:

To find out if assessments are the best way to work out who needs PIP they;

• might look at changing how they work out who needs PIP.
• might not look at how a person’s disability or health condition affects their day-to-day life but look at what diagnosis they have got instead. This means people might not need to have an assessment or a review anymore.
• will look at different ways for people to get the proof they need about their condition and its impact on them.

What did SMA UK say ?

A diagnosis of SMA alone does not indicate how the condition impacts a person’s function.  How severely people are affected, and in which ways, varies greatly from person to person and over time. This means that support needs will also vary greatly.

Whilst more burdensome, some sort of assessments would be welcomed by those living with SMA, the impact of the condition on daily life cannot be fully judged by a healthcare professional.

There needs to be a thorough assessment process that is backed up with evidence from a healthcare professional that understands the condition and who has had a relationship with the patient.

With health professionals already working beyond their capacity, any extra workload would further impact standards of care on the NHS.

Reviews could be initiated by the person living with SMA if they believe the impact of their condition has changed.

For the SMA community, evidencing a formal diagnosis is not an issue. It may be more difficult to evidence any mental health issues or other conditions that individuals might also live with. It is important to recognise the impact of living with a life limiting progressive condition on mental health and to factor these nuances when assessing the level of support required.

The assessment for PIP looks at 12 different  ‘activities’. It checks if someone can do these activities on their own  or with some support. Things like:

• cooking a meal
• going to the toilet.
• communicating with other people.
• planning to go somewhere
• standing and getting around.It has been a long time since the activities in the assessment were decided. The government are thinking about how they might need to change and how the activities impact the costs of daily living.

What did SMA UK say ?

Having one assessment tool to cover all conditions will always be a challenge. There will always be individuals who do not fit into any of the descriptors given and will have to make do with a ‘best fit’ If there is not one, there needs to be a space for notes under each activity category. This will help fix this issue.

Any changes to the activities should only be made with close consultation with the disabled community.

Reliance on medical equipment should be included. Having to always carry equipment like feeding pumps, suction machines, ventilators and cough assists wherever one goes severely impacts the ability to travel, cost of energy bills, cost of bespoke mobility equipment and the level of care support.

With well trained assessors, following the same criterion, the current threshold system can work well.

A robust and streamlined appeals process needs to be maintained to ensure equitable provision.

This could be things like:

• travel.
• walking sticks or frames.
• special equipment to help you at home.
• heating and electricity bills.

At the moment, people can choose to spend PIP on whatever makes their life easier. The government want to find out the most important things that people spend it on.

They are looking at other ways they could support people:

• Offering people a voucher instead of money. People could use the voucher to pay for things like equipment or services like physiotherapy or short breaks.
• Paying people back: people could buy things they need themselves. Then they would get  the money back through a receipt-based system.
• A grant: money the government could give people as a one off to help them buy something. The person would not need   to pay the money back.

What did SMA UK say ?

The only benefit we can see for this is that it might save the government money.

We do not see any reason why this would be better than cash for the disabled community. It feels very restrictive and as if disabled people cannot be trusted to spend their money in a way that best fits their needs.

A receipt-based system would put extra workload on the administrators as well as the disabled community. Again, it suggests that the disabled community cannot be trusted, and money cannot be used for general household costs.

There are already one-off grant systems that work well for people living with SMA. The housing adaptations grants, and the Motability grant are hugely valuable to the SMA community. They are not, however an alternative to a cash system where the funds can be spent on individualised needs in a flexible way. People living with SMA value having control of their own budget and do not want to be dictated to as to how they can spend money to support their very specific individual needs.

All these alternatives would increase administration tasks and costs and would negatively impact the mental burden of the SMA community.

Access to essential physiotherapy, occupational therapy, short breaks and mental health support are all services that should be provided by the NHS for those living with SMA. Capacity for essential services within the NHS needs to be addressed and geographical access inequities irradicated.  Cash payments are to meet the needs over and above these essential NHS clinical services. Getting rid of the cash payments would push many into poverty.

Some people who get PIP need more support with their health or care needs. Some people might get some of the support they need from the NHS or the local council. The government want to think about working together more closely with local councils and the NHS to make best use of their money.

What did SMA UK say ?

Whilst the NHS do provide specialist equipment to people living with SMA, such as suction machines, ventilators, supportive sitting and bathing equipment, this does not cover all of the extra costs that come with living with a severe physical disability.

The current system is not a perfect, equitable system for all. Long waiting lists, inadequate equipment and postcode lotteries often drive people to look at private options. For example, Wheelchair Services in many areas will only provide for the most basic of needs. Accessing a power wheelchair with adaptations such as risers and tilt-in-space, that increases independence and enhances quality of life can often only be achieved through the private sector.

There will always be additional costs over and above those allocated for care support and specialist equipment. Daily life is more expensive with increased energy requirements for warmth and to power vital equipment in larger accessible spaces needed for housing, accessible transport, days out and holiday budgets which have to stretch to an extra person, , to name a few.

Support with transport is patchy- it is often not included in local authority care packages. People have to fight for it, many being told it is down to their PIP to cover. Unfortunately, there is often not enough left in a person’s budget to afford reliable transport, which can stop many from accessing services or even attending appointments. As with many things, this can depend on the area, with urban areas having more availability of cheaper accessible transport options. Those living with physical impairments can find accessible taxis expensive and hard to come by, again limiting their options for getting out and attending vital appointments.

Many schemes designed to support those living with a disability with costs such as household bills, accessible vehicles, housing adaptations and even care provision are means tested. This means that those in work are disproportionately affected by increased costs of living. In many cases, this discourages disabled people from working. They are financially better off n ot working.

PIP brings a flexible, personalised and needs based approach to support. Existing local authority and NHS services are for specific needs such as adaptations and specialist equipment. Disabled people need a system that does not dictate what the money has to be spent on. The extra costs of living with a disability are many and varied.

People with SMA would appreciate fewer assessments. SMA is a long-term condition. Needs are unlikely to change quickly, unless there is an acute event

The SMA community would want reassurance that any plans to align PIP assessments with local services would not make assessments longer and more complex.

It’s a good idea in principle to reduce duplication by aligning an independence payment assessment with local services assessments. However, with some people currently not receiving timely, personalised or accurate assessments for social care, the whole service would need a complete overhaul to ensure that people receive the support they need in a timely fashion. The local assessor workforce would have to be increased with well trained, skilled personnel who understand the complexities and the nuances within the disabled community.

Giving local areas flexibility would mean local amenities and provisions could be utilised more effectively, however it could also exacerbate the current issues seen with the postcode lottery of provision. There would have to be a certain standard of provision that is expected in all areas, and a national body to whom local areas are accountable to. There should also be a system that celebrates and shares gold standard practice from areas that might go above and beyond.