“… They are simply making me more disabled” – ALLIANCE Briefing on access to SDS

ALLIANCE survey finds people are facing multiple barriers accessing SDS

In early 2025, the Health and Social Care Alliance Scotland (the ALLIANCE) was informed by a small number of members that people with lived experience were facing new or increased barriers to accessing Self-directed Support (SDS).

To explore this further, we designed and published a small survey asking our members and the people they represent about their experiences. The survey received 47 responses, from individuals with lived experience and organisations representing people accessing SDS, between 8 January and 3 March 2025. We heard that:

• 64% of respondents had had their care packages being reassessed or reviewed
• 49% had been subject to pre-determined decisions
• 47% had faced cuts to their care packages
• 21% were told that there would be caps to payment amounts or support

Over a third of people told use that they had experienced a combination or all of the issues. 64% told us that these issues were occurring more often in the past year.

People noted other barriers to accessing their SDS. For example, people accessing SDS and unpaid carers have described receiving “long, convoluted, threatening emails” from local authorities. Another said that their referrals were being “ignored”, and were told to “exhaust the list of charities” for support instead. It is clear from the additional comments people made that they felt they were subject to predetermined decisions, reviews and reassessments have several negative consequences that impact more than just the amount of money they receive, including their health and wellbeing.

We have heard that SDS budget cuts, poor communication and decision making are negatively impacting people’s independence, quality of life, ability to worship, carers’ respite, ability to see family and friends, exercise, have a social life, and attend clubs or holiday activities.

“… They are simply making me more disabled, and acting like accountants more than social workers. Their assessment does not feel genuine, but an exercise with a pre-determined outcome – a cut.”

Most of the people we heard from indicate that decisions and processes surrounding SDS have not prioritised people’s needs. At its most basic, people have not been spoken to or treated with empathy, dignity and respect. This may reflect increased pressure on local authority staff to tighten eligibility criteria.

“Trying to get care is destroying our mental and physical health”.

In a care package review, one respondent was told by their social worker:

“We have a £10 million deficit in our budget and I am here to make sure you don’t have more than your fair share”.

A key tenet of SDS is that effective communication is crucial for empowering individuals to make informed choices and manage their own support, ensuring they have control over their care. It is clear from the evidence gathered that a lack of or poor communication of decisions, has left changes to people’s budgets unexplained, resulting in people feeling disempowered and disrespected.

Unpaid carers, parents and children and young people have found that their lives are made smaller and more difficult because of an increasingly restrictive approach to SDS, rather than being encouraged and empowered to have choice, independence and flexibility.

Carers told us they have to “battle” or “fight for support” and that “there’s a limit to how much fighting for things you can do”.

Third sector organisations are trying to support people who experience issues in accessing SDS and wish to dispute a decision. Still, the scale of the issues is placing even greater pressure on an already overwhelmed sector. The findings set out in this briefing are concerning and echo those from our earlier comprehensive ‘My Support, My Choice’ research, carried out with SDS Scotland in 2025.

Social care, paid and unpaid care, are under resourced and undervalued. Deficits should not compromise people’s ability to access SDS and live their lives as they choose. Yet, decisions and actions of some local authorities and practitioners are in direct contradiction with the SDS law, guidance and Improvement Plan. People’s lived experience must be listened to and acted on so these problems aren’t pushed to the brink.

Read the full briefing via the links below

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