Like all disabled people, the cost of living crisis is hitting people with cerebral palsy and their families hard.

Recent findings from the Joseph Rowntree Foundation showed that there is “a gap of around 12 percentage points in poverty rates between disabled and non-disabled people”.

Disability equality charity Scope’s Cost of Living Crisis campaign estimates that disabled people face extra monthly costs of £600 on average. Their research also revealed that almost half of all disabled people said they are planning to not turn on their heating even when cold due to the cost.

Plus, a Glasgow Disability Alliance event in early October highlighted cost of living challenges for their members, while the GDA urged policymakers to act on the recommendations contained in their report, Ending Poverty and Removing Barriers to Work for Disabled People in Glasgow beyond Covid-19.

What support is available in Scotland?

Scottish Government’s cost of living support website

The Scottish Government’s cost of living support website collates information on where to get support if you need help with food, heating and electricity, as well as information on benefits.

If you need urgent help with bill payment, contact your local council. Each council offers a different range of support to local residents.

Energy support

The following energy support is available:

• Most households across the UK will get £400 off their fuel bill through the Energy Bills Support Scheme.
• Those who receive Universal Credit or Income Support may get an additional cost of living payment of £650
• Older people (born on or before 25 September 1956) may receive a Winter Fuel Payment of between £250-£600 to help pay heating bills
• Those who receive the Guarantee Credit element of Pension Credit or are on a low income could also get a £150 Warm Home Discount

The following energy support is available specifically to disabled people:

• Disabled people who receive Disability Living Allowance (DLA), Personal Independence Payment (PIP) or Scottish disability payments (Adult Disability Payment or Child Disability Payment) may have received a one-off Disability Cost of Living payment of £150 in September/October
• Child Winter Heating Assistance is a benefit from the Scottish Government to some disabled children. This winter, eligible children will receive a one-off payment of £214.10.
• As of this year, the Department for Work and Pensions (DWP) will no longer make Cold Weather Payments to clients in Scotland. From February 2023, people who received Cold Weather Payments will get an annual payment of £50 via Social Security Scotland’s Winter Heating Payment.

Other support:

• The Scottish Government’s cost of living support website outlines other sources of support for energy, as well as how to access energy efficiency grants for your home.
• The Leonard Cheshire Foundation have a webpage with useful links to advice and organisations that can support disabled people during the cost of living crisis.

To coincide with World Cerebral Palsy Day on 6 October 2022, we have published our Annual Review, setting out how we have supported people with cerebral palsy and their families over 2021-2022.

Read our Annual Review 2021-2022

Between April 2021 – March 2022 we provided specialist therapy to 140 people with cerebral palsy and with a total of 701 individual therapy sessions for children and adults. We also ran two therapy-led groups for primary-aged children.

Recognising that cerebral palsy can impact mental health as well as physical health, we also provided 21 one-to-one sessions with a Clinical Psychologist to support people’s overall wellbeing.

Sharing information has been an important part of our work and has continued throughout the year. Our website, regular newsletters and social media have kept people updated on news and services relevant to the CP community and our virtual conference in October 2021 allowed the cerebral palsy community to share information and experience.

Through our campaigning, we have also worked hard to keep the needs of people with cerebral palsy at the forefront of the minds of statutory service providers and policy makers and continued to play a leading role in policy development.

Read our Annual Review 2021-2022

Cerebral Palsy Scotland has worked in partnership with NHS Ayrshire and Arran, ARC Scotland and the University of Dundee to complete the first phase of a bigger project to develop neurology specific principles of good transition.

The project is funded by the Scottish Government through the Neurological Care and Support: A Framework for Action programme.

What does ‘transition’ mean?

ARC Scotland describes transition as, “not a single event but a process that unfolds over several years and involves significant emotional, physical, intellectual and psychological changes”. Examples could include: moving from child to adult health services, moving school or house, or starting a job.

Successful transition is dependent on a wide range of factors including: clarity of expectations; appropriate support and resources; sufficient planning; clarity of accountability; knowledge and skills; and capacity to plan for change and emotional and physical well-being.

Earlier research confirms that well supported transitions can lead to positive outcomes, inclusion, and a potential reduction in the long term use of health and social care services.

Why develop a neurology specific set of principles of transition?

Disease specific models of transition, such as epilepsy and diabetes, are also emerging and are aimed predominantly at transition from adolescence into adulthood. Such models, with a strong focus on the medical condition often fail to acknowledge concepts such as the construction or reconstruction of a self-identity. For those who develop a neurological condition in adulthood there is currently a lack of understanding of how transitions are understood and experienced.  This is confounded by a lack of evidence to inform the nature of and the effectiveness of interventions used in practice to support positive transition experiences.

Development of a neurology specific set of principles, incorporating illness experience; developmental and lifespan transitions; and social and cultural transitions, embedded within a good practice framework could be applicable to people living with neurological conditions across all aspects of transition.

This could have significant and far reaching consequences for people living with a neurological condition, such as cerebral palsy, while facilitating working with key partners across sectors.

The development of generic pan-neurological principles of good transition across the lifespan will enable the better co-ordination of services that can address the complete medical, psychosocial, emotional and vocational needs of people with complex lifelong neurological conditions to enable the delivery of personalised care that is rights based and takes account of people’s experiences and choices.

Find out more

You can read the findings from the first phase of the project.

A comic version of the findings of the research are also available.