There is a lot of media talk about money relating to people with learning disabilities right now.
This includes the (under)funding of services and cuts, the amount of public money spent on services for people with learning disabilities, poor staff pay and staff shortages and some services extracting obscene profits while others struggle because they cannot make the numbers add up.
While these issues are urgent and important, they ignore crucial issues about money that really matter in the daily lives of people with learning disabilities.
Here are five things about money we should be talking about.
Control over money
The recent 200 Lives project, which I led at Manchester Metropolitan University (see box), evaluated the quality and costs of supported living and residential care for 200 adults with learning disabilities.
It showed that most people had some choice over how they spent some of their money, but ultimate control, particularly over big-ticket spending such as rent, usually rested with someone else.
Three out of four did not know if they had a personal budget or not, even though Department for Work and Pensions (DWP) statistics show that three-quarters of adults with learning disabilities do have some form of personal budget.
Choice in where to live
We know that the quality and location of housing makes a massive difference to people’s lives, and that housing costs matter whether someone is renting or buying.
However, little of this reaches the bubble of debate when it comes to supporting people with learning disabilities.
The 200 Lives project found that most people had not made active decisions about where they lived. Those in supported living were connected to their neighbourhoods, whether for good (where people felt safe, connected and mobile) or ill (in isolated areas of antisocial behaviour, crime and deprivation).
Almost 50,000 adults with learning disabilities are living with their families in England. Is this what people and families want?
A largely invisible homelessness crisis is looming. The number of households with a person with learning disabilities owed a homelessness duty has increased almost 40% in less than four years.
Research has repeatedly shown that poverty and hardship play a big part in the poorer health of people with learning disabilities all through their lives.
Twelve years of austerity coupled with the impact of Covid means that more people with learning disabilities and often their families are likely to be experiencing poverty.
Support to equip people for jobs they want to do (rather than just to polish CVs) is cost effective but not happening
Then there is the impact of the huge and ongoing increase in the cost of food, fuel and much else.
The scale of poverty being experienced by people with learning disabilities, particularly those not eligible for any kind of social care support, is largely invisible.
Inadequate, punitive benefits
People with learning disabilities are largely absent from general discussions about the adequacy and punitive operation of benefits such as universal credit and employment support allowance (ESA).
The number of people identified in DWP statistics as having learning difficulties, learning disabilities or autism receiving some form of disability benefit is rapidly increasing.
More than 600,000 people (including over 250,000 children) were receiving disability living allowance, personal independence payment or attendance allowance in May 2021. This is an increase of 34% across all benefits since May 2018.
How stressful is life under ESA, with its threat of sanctions, or having to undergo PIP assessments and reassessments?
Proper paid jobs
It is beyond doubt that proper (secure, reliable and fulfilling) paid jobs are linked to better lives.
Through the pandemic, many adults with learning disabilities in paid jobs were valued to the extent that they were placed on furlough schemes and returned to their jobs.
The 200 Lives project, however, found many people wanted to work and lived fairly empty lives without a job.
Employers are crying out for reliable, committed workers, yet fewer than 6% of adults with learning disabilities getting long-term social care are in any form of paid work, with most of that being extremely part time and low paid.
Better education and support to equip people for substantial jobs they want to do (rather than just to polish their CVs), without a punitive benefits system terrifying people is known to be cost effective but it isn’t happening.
In the abstract swirl of media debate, service providers, councils, trade unions and think tanks have all been able to have their say about money when it comes to people with learning disabilities. It’s time for people with learning disabilities to take centre stage.
About 200 Lives
The 200 Lives project examined the cost and quality of supported housing and residential care for 200 adults with learning disabilities.
It was designed to include the perspectives of those who did not have capacity to consent to take part in the research to ensure it covered a wide range of support needs.