A majority of Scots accessing Self-directed Support (SDS) believe it has improved their experience of social care, according to a new report.

But more must be done to stop budget cuts, tightening eligibility criteria and growing waiting times affecting people’s physical and mental health, the report’s authors say.

From November 2018 to February 2020 over 600 people took part in a consultation about their experiences of Self-Directed Support (SDS) – the largest direct consultation of its kind to date.

SDS is Scotland’s mainstream approach to social care and intended to give individuals needing care more choice and control.

There are four options to choose from, with direct payments available through option one for individuals who want to select and arrange their support.

With option two, individuals choose the support they want but another organisation – a local authority for example – arranges it on their behalf.

Local authorities select and arrange support for an individual through option three, which is the default option, and any arrangements that are a mix of the three options are classed as option four.

Published by the Health and Social Care Alliance and Self-Directed Support Scotland (SDSS), one participant in the study described SDS as a “passport to independence”.

“Previously the local authority provided this care, you had no choice… But now with SDS I have control,” they said.

“I can choose what option I want…I find this is much more liberating…Basically, it has been the passport to independence. Whereas before, oftentimes, especially if you’re disabled you have to take what you get, you haven’t really any choice.

“But to have the ability to decide for yourself is liberating. So, it makes a big difference.”

While some said SDS helped them achieve a better quality of life and greater independence, others criticized the bureaucracy involved: 

“Don’t hold your breath,” one participant said. “Process takes ages, too many long forms with stupid questions. Wait ages for social worker. Then pushed into personal assistant option as it’s cheaper for local authority. That’s if you can meet criteria.”

The report – which is funded by the Scottish government – makes several recommendations, including that more needs to be done to help more marginalised groups – women, ethnic minorities, people with learning disabilities, those with experience of homelessness and people living rurally – to choose the option for care that is right for them.

People’s experiences of social care during the pandemic however, are not covered by the project.

Reductions or complete halts in care during lockdown left thousands without the support they relied on.

Last week, the Scottish Human Rights Commission said disabled and older people’s human rights had been compromised by reductions in care during the pandemic.

Following this, the head of the Scottish Personal Assistant Employers Network Colin Millar urged social care users to switch to direct payments to protect themselves from future emergency care cuts.

‘Action is needed to ensure that budget cuts and tightened eligibility criteria do not negatively impact the physical and mental health and wellbeing of people on low incomes accessing or applying for SDS’, the report states.

Assessment waiting times need to come down to help people avoid ‘unnecessary stress and anxiety, deteriorations in their physical and mental health, and from reaching crisis point’.

There is also a call for independent advocacy, advice and support organisations that help people choose the option that is right for them and organise their own care, to be provided with ‘sustainable resources’ so their important work can continue.

ALLIANCE CEO Ian Welsh says the new research helps to fill a gap when it comes to knowing what people’s experiences of SDS have been.

“The ALLIANCE’s vision is for people to have a strong voice, enjoy their right to live well, and are at the centre of decision making,” he adds.

“Having choice and control over SDS is a key element of this for many thousands of people around the country.

“These findings…help fill a gap in the data about people’s experiences, and demonstrate a range of improvements to ensure social care is better focused on the rights, needs and wishes of people, families, and unpaid carers.”

The Chief Executive of SDSS Donald Macleod says it is what happens next that matters most:

“[This research] is the most comprehensive garnering of the range of lived experience of those attempting to exercise their human right to choice and control through SDS in Scotland. 

“What is important is what happens as a result of this report. SDS Scotland assures its membership that we will engage with Scottish government, as their delivery partner in the implementation of the SDS strategy, in order to operationalise the learning from My Support My Choice.

“Significant interest from local authorities and Health and Social Care Partnerships in the findings may support local planning, given its reflection of the diversity of the local application of the statute. We look forward to a positive dialogue with those funding SDS, informed by this richness of experience.”

 

The full report – My Support, My Choice: User Experiences of Self-directed Support in Scotland – can be read here with an Easy Read version available too.

 

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