With the turn of another year, it is time to look ahead to what might happen in the next 12 months, although I suspect that for many people with learning disabilities, they will do this with a sense of trepidation.
The continuing austerity agenda and reform/cuts (delete as applicable) to welfare benefits will cause more worry and, in some cases, hardship to people with learning disabilities, especially those at the milder end of the spectrum who stand to lose the most.
With the Conservative government signing up to five more years of austerity, local authorities are facing yet more cuts to their budgets. Social care and learning disability services will again be under threat and it is likely that across the country some services will be scaled back or cut altogether. While those with profound and multiple learning disabilities will remain protected, largely, it is those who only have a few hours of support a week who stand to lose most if social care services are cut.
Likewise with benefits, as the move from Disability Living Allowance (DLA) to Personal Independence Payment (PIP) continues, those with fewer needs are worried about missing out as the eligibility criteria has been ramped up (remember, in 2013 at the beginning of the change the government stated its aim to take 500,000 people off the benefit).
There are also fears about the reassessment process for Employment and Support Allowance (ESA). Again, eligibility criteria have been ramped up and there are many anecdotal stories of people with learning disabilities and/or autism being found fit for work when they really aren’t – there have been various reports of the Work Capability Assessment discriminating against people with autism. There is also the threat of the government cutting £30 per week from ESA, which again could cause more hardship.
These issues are causing real stress for people with learning disabilities. If they lose their support services, it could be the difference between living well and independently in the community and struggling – with the added risk they could end up in crisis and needing more specialist services.
Meanwhile losing DLA/PIP or some of their ESA could be the different between eating or heating for some. Many people with learning disabilities rely on benefits – only 6% are in paid employment – and, as a result, have largely fixed incomes. Take away some of that money and they will struggle to pay their bills. There is also anecdotal evidence of people with learning disabilities getting into trouble with debt and loans because of this.
People with learning disabilities aren’t scroungers and taking money away will not incentivise them to go out and get jobs – which is one of the government’s reasons for cutting benefits. Many want to work but face barriers to doing so and/or will need support to get a job – of which there is precious little. Sadly, it will only end up causing hardship.
Elsewhere, the issue of people with learning disabilities and behaviour that challenges being stuck in assessment and treatment units, and moving them back into the community, is likely to loom large. In 2015, NHS England became the latest organisation to try and come up with a solution to the problem. ‘Homes not Hospitals’ came up with some good ideas, but whether these are delivered remains to be seen. Hopefully this year will see some progress towards the desired outcome, but this is a three-year plan so visible progress may be limited in 2016.
This year will also see the continued rollout of the Learning Disability Mortality Review programme, which will support reviews of deaths of people with learning disabilities. The recent Mazars report into Southern Health and its failures to adequately investigate the unexplained deaths of many people with learning disabilities demonstrates how important this could be.
People with learning disabilities die on average 18 years before their peers without, and many of these deaths are avoidable. This long-overdue programme could well go a long way to providing the reasons why and tackling some of the health inequalities that still exist for people with learning disabilities.
There are still other causes for optimism, and this should not be forgotten. There are many services out there providing good and innovative support to help people with learning disabilities live well. There are also great examples of voluntary organisations helping people with learning disabilities take a full part in their community. These should be celebrated and given more exposure – and backing – than they currently get.