Holding handsParents of people with a learning disability are so anxious about the future that many hope their sons or daughters will die before they do, according to a report. 

The research, by charity FitzRoy, reveals the profound anguish of families of children with learning disabilities about their future in the face of ongoing funding cuts to budgets and services that support them. They live in fear of the dire consequences of incorrect assessments and the lack of consistent and quality care available. 

One desperate parent said: “Who is going to look after my daughter when I die, whose responsibility is it? I was at the hospital for 46 days and 26 nights with my daughter. Who will do that when I die?”

In response to these concerns, FitzRoy has made a number of recommendations for change, including a demand for local authorities to fulfil their duty of care by making provision for potential lifetime needs that include education, housing, employment and medical care. 

Other key recommendations include improving the status of care work to improve retention and morale in the sector and embedding adult placements in communities.

Anna Galliford, FitzRoy’s chief executive, said: “Our findings paint a depressing picture for the current system of support for people with learning disabilities, writ large in the desperation of the people who are closest to them. It is clear that a great deal of anxiety about the future comes from the difficult reality of the present.

“A complex system, lack of clear information, and cuts to budgets and services are having a profound, detrimental effect on the individuals living with a learning disability and the people who support and care for them. Parents are exhausted because they have to fight for every scrap of support for their children, while care professionals feel frustrated that they cannot do more.  

“As an organisation, we have long championed the view that we must consider the lifetime needs of a person with learning disabilities from the moment their needs have been identified. It is clear we need to do more, and focus efforts and resource to relieve these pressures.”

The study found that families’ concern about the long-term future of their sons and daughters is linked to the question of responsibility for their welfare after parents have died and limitations to arrangements as the law stands. 

One parent said: “You can write all the bits of paper that you like but, if it is not enforced, then it is worth nothing.” 

Building on its previous report, A Plan for Life, FitzRoy is urging local authorities to fully deliver their duty of care and take a long-term approach to care provision for people with learning disabilities that will ensure improved assessments of need and more stable care packages. This commitment will provide reassurance to parents that their wishes for the quality and type of care for their child will be understood and taken into account, even after they have died. 

In addition, FitzRoy plans to work with local authorities on an adult family placement schemes that enable adults outside the immediate family to take on steady roles and responsibilities, and become a powerful advocate for individuals. 

Low social status afforded to care professionals was cited by parents in the research as a key concern arising from a lack of understanding of the range of skills and responsibilities that make this such a rewarding job. 

One parent said: “I discovered in the paper I could earn much more as an office cleaner than a carer, and have so much less responsibility. But the responsibility carers have and the criticism they face if they make a mistake is intense.” 

Further findings show that difficulties in the recruitment and retention of staff, exacerbated by the cutbacks in social care and by low pay, are jeopardising the relationship between carers and families. In the study, 9 out of 10 care professionals said that they wanted families to understand that they were providing quality care, while the same number wanted parents to do more to help them understand the person they cared for. 

To strengthen this critical relationship and improve retention and morale in the sector, FitzRoy is calling on the government to promote a campaign that raises the status of support workers and brings it in line with other professions like nurses. 

“My hope is we can reach a point where no parent feels such despair and the same bleak conclusion as the one that inspired this report,” Galliford concluded.