More than half (56%) of people with intellectual disabilities experienced a loss or change of care since ‘austerity’ measures (cuts to social care spending) were introduced a decade ago, according to a new study published in the Journal of Long-Term Care.

The research aimed to investigate the extent to which austerity measures had impacted the lives of people with intellectual disabilities in England, and whether their support costs were associated with their characteristics, needs and outcomes. Three research questions guided the research:

  1. Have people with intellectual disabilities actually lost services (in particular social care services) as a result of austerity measures?
  2. What services do people use and what are the costs of their care?
  3. What impact if any has any loss of benefits and services had on individuals with intellectual disabilities?

The researchers recruited 150 people with intellectual disabilities through NHS Trusts and Social Services departments across England as well as local carer and service user organisations and independent service providers.

The participants were then interviewed and asked about their experiences with care services and how a loss of these services (where applicable) impacted on the person’s day-to-day life.

A loss of care frequently impacted on the individual’s day-to-day life

The results showed that the largest proportion (42%) of the sample had lost care, while 14% had experienced changed care. For 36% of the sample, care had remained the same, while just 7% said that their care had improved.

This loss of care frequently impacted on the individual’s day-to-day life, and the researchers identified three main themes which demonstrate this. These were: a loss of ‘living normally’, loss of independence as family and the third sector take up the slack, and a loss of future aspirations.

For example, one participant told the researchers that his living disability allowance stopped in 2016 as when his care was reduced, he didn’t have the support to file for benefits again. Others said their family members are now having to give them money to pay for food and activities, while others are routinely having to visit food banks.

Some participants gave their views about austerity (or cuts to services) in general. They regarded government austerity measures as the root cause of their inadequate support, with one participant saying: “I don’t feel protected by the government. I am just a number. The government doesn’t value me. You are very vulnerable and there’s nothing you can do.”

Overall, those who had lost care had significantly lower self-esteem and quality of life scores including the ‘social participation’ and ‘wellbeing’ domains than those who had not lost care.

Three quarters (74.8%) of the sample scored highly for having clinically significant anxiety, with the qualitative findings indicating that fears about pending cuts to services and benefits could fuel individuals’ anxiety.

The social networks of the sample were also impoverished, with the average network size at just 34 people (and mainly consisted of other people with intellectual disability) compared to mainstream populations estimated to be around 125.

"People with intellectual disabilities remain disadvantaged in terms of health, employment, and romantic and platonic relationships"

Commenting on the study’s findings, the authors said: “These findings indicate that despite considerable research and practice interventions in the interim decades, the reality is that people with intellectual disabilities remain disadvantaged in terms of health, employment, and romantic and platonic relationships.

“Emerging research also reports how needs assessments fail to translate into outcomes for people with intellectual disabilities and their carers. This all weakens our trust that the theoretically laudable Care Act 2014 – premised on promoting a person’s ‘wellbeing’ and enabling individuals to realise ‘normal’ life goals (e.g., employment; living in a home of one’s own choosing; friendships; and intimate relationships) has had any tangible impact on the lives of people with intellectual disabilities due to poor implementation.”