Cerebral Palsy Scotland

How and why I started getting Self Directed Support

In this blog, Barry talks about his decision to start accessing Self Directed Support (SDS) and how it has helped him live independently.

My name is Barry Smith, and I am 43 years old, I have a physical disability which is cerebral palsy. Because I have this, I use a power chair as well as a Lightwriter what let people understand what I am saying to them.

When I am not able to do something for myself, I try to think of a different way to do it. Like I find it hard to type on my computer with my fingers – because of this I have a big keyboard with an overlay over it, so I don’t hit the wrong letters, then I use my big toe to type. Now I am going to tell you what I use for my mouse – a joy stick.

Before getting Self Directed Support

In 2006 I got my own house. Up to 2016 I used a support office that I liked at the time, down to being new to getting support in my house. But one thing I didn’t like at the support office was that they could send anyone – that upset me because the person might not know how to speak to someone who uses a communication aid.

Starting Self Directed Support

In 2016 I asked if I could go down the road to get a Personal Assistant (PA) to work for me. How do they help me to get what I need for life support? Just like if I need a hand to make a phone call to fix something in my house, I don’t have to worry about if the person can understand me because I have my own PAs who work for me.

By using my own PAs, for me they are my hands – I am saying this down to they do things that I can’t do for myself or am not able to do for myself.

In my eyes when anyone need support care setup they should be told about SDS because it is people’s right to know all the right support information and asked what road they want to go down.

During lockdown

In March 2020 you all know we all got told to stay at home, but I couldn’t let my PAs stay off work because they are my hands, doing things that I can’t do for myself. But I am there to ask them to support me with things I am not able to do for myself, like making me something to eat and feeding me with it. And do my housework for me as well as getting me ready as well as talking to me because I don’t go out. Because of it one of my PAs put out a tent for me at my back door which gave me a bit of head space, because they know I couldn’t go out, by doing this I stop wanting to go out.

My support with SDS now

Now I start going out a little bit more, but I try to stay away from catching Covid 19.

I would personally say to anyone who is thinking getting support, go down the SDS because you can teach your PA what you need and tell them what your outlook in life is.

Before I end my little talk I would like to make people aware you can use a communication aid when they are on SDS.

 

Support with the cost of living crisis

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:

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:

Cerebral Palsy Scotland call for benefits to be increased at least in line with inflation

Cerebral Palsy Scotland have today signed a joint-letter to the Prime Minister along with 18 other long term health condition charities strongly urging the UK Government to commit to increasing social security benefits at least in line with inflation, as pledged by the previous Prime Minister.
We have also signed a separate joint-letter strongly urging the First Minister to commit to increasing social security benefits that are devolved at least in line with inflation.
You can read the letters here.

Report highlights challenges faced by people with CP as they move into adulthood

On World Cerebral Palsy Day on 6 October, the All Party Parliamentary Group on Cerebral Palsy launched a report focussing on the difficulties that young adults with cerebral palsy face as they attempt to make the transition into adulthood and detailing how young people with cerebral palsy should be helped so that they may have meaningful, productive lives.
 
The All-Party Parliamentary Group on Cerebral Palsy is a Westminster forum for Parliamentarians from all political parties to better understand the challenges faced by individuals of all ages with cerebral palsy and their families.
The APPG on Cerebral Palsy want the government and key decision-makers to have an open and honest conversation about what needs to happen to improve the lives of children and young adults with cerebral palsy.
The report – the fourth produced by the group – aims to guarantee that people with cerebral palsy in the UK, regardless of where they reside, have access to high-quality services by shedding light on the areas in which those systems succeed and fail.

How we’ve made a difference

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