Baroness Jolly
Main Page: Baroness Jolly (Liberal Democrat - Life peer)
Baroness Jolly (LD)
My Lords, I thank the noble Lord, Lord Borwick, for tabling the debate, his challenging speech and the invitation to the birthday party. The debate has been rich in not only its breadth but its depth. Last time we debated this topic, I spoke about the British film “The Silent Child”, which highlighted the difficulties facing many deaf children and their parents. The film was powerful in part because it placed the viewer in the position of a child who could not hear. A person-centred approach to disability is paramount to progress in disability rights. Over the next 50 years, we must work to ensure that people with all kinds of disabilities are included in policy spaces and that their diverse concerns and experiences are considered and acted on.
I was recently in contact with a young man, desperate to live independently, who, through his experience as an individual with physical disabilities, has developed an expert knowledge of gaps in the personal assistance system that supports his independent living. As a younger person, the sky should be the limit, but only when he can recruit suitable individuals trained to assist him with his day-to-day tasks. Crucially, he pointed out to me that for an active person such as him, the ideal assistant should be trained to do everything from heavy lifting and basic care to aiding him with administrative tasks and assisting him with his studies at university. Such a person is difficult to find when personal assistants are underpaid and their professional development training is neglected. Different funding streams from different parts of the public sector are often still not enough to pay a personal assistant a proper wage. He made a strong argument for reform, noting that disabled individuals wanting to live an independent life is the new “reality”. I would be grateful if the Minister could suggest a way forward for him and others in his position. I declare my interest as chair of the board of trustees for Hft, a national charity that supports adults with a learning disability.
There have been huge improvements in care for people with disabilities in the past 50 years; I expect that our imaginations cannot begin to determine what care might be like in 2070, in 50 years’ time. Every one of us wants to feel valued and loved, to have a home to share, employment, friends and to be cared for. This is the same whether you have no disability or a physical or learning disability. Debates on adult social care in this place tend to revolve around the need to support older people; that is important but I welcome this debate on disability, which is often forgotten. If you ask someone about their mental picture of a disabled person, it is usually someone in a wheelchair or with other aids or adaptations. Across the UK, organisations work tirelessly to provide those basic wants for adults.
I will focus the rest of my contribution on learning disability and the financial problems in delivering care. The estimated 905,000 adults with learning disabilities in England represent a growing cohort of adults needing social care support. For the most part, they look like any of us—able-bodied people. According to the County Councils Network, adults with learning disabilities can account for up to 35% of the total budget for adult social care spending for local authorities in England. Adults with learning disabilities also represent the fastest-growing sector in adult social care. In 2005, only six of the 151 local authorities in England spent more on care for working-age adults than they did on care for the elderly; in 2017, 57 did so, so the switch during those 12 years has been considerable. Adults with learning disabilities are living longer lives. While this is to be welcomed, we should also be aware that the support these individuals will need will become more complex if they develop secondary support needs; for example, adults with Down’s syndrome are more likely to develop dementia earlier in life than their non-disabled brothers or sisters.
Unlike care for older people, support for adults with learning disabilities is funded solely by local authorities, with no self-funders. Figures published by NHS Digital show that between 2014-15 and 2017-18 the number of adults with learning disabilities requesting social care support more than doubled, but 66% of people ended up getting no support and only 19% ended up with long-term support. Local authorities have considerable power over providers. They are the only purchasers of services in any given area, so are, in effect, a monopsony. With few providers having reach beyond one or two local authorities—and with exit barriers relatively high and entry barriers relatively low—most providers are beholden to individual local authorities for all their funding.
However, noble Lords will be aware that local authorities have borne the brunt of the Government’s austerity programme, with funding from central government rapidly decreasing. This has placed a downward pressure on the rate at which they are able to commission social care packages. Providers are becoming overrisked and underrewarded. Contracts are typically commissioned annually on the basis of the number of support hours an individual needs. The more independent a person is deemed to be, the fewer the support hours commissioned for them. This creates perverse economic incentives, as providers which are able to invest in improving the quality of care they deliver face being penalised by having the number of hours reduced. This could have potentially damaging consequences for both the financial sustainability of the provider and the support of the individual in receipt of care. My charity’s recent report, Sector Pulse Check, stated:
“More than half (59%) of providers have begun to hand back contracts to local authorities as a way of responding to funding pressures, compared to 25% in 2017. Looking forward, 68% said that they envisage having to hand back contracts ‘in the near future’ if their financial situation does not improve”.
Learning disability cannot be treated. There are few aids, adaptations or devices to help the individual and the carer. However, I am optimistic about changes in the digital sphere. I hope that digital technology will soon be able to detect changes in behaviour to indicate when someone will have an epileptic fit, and that virtual reality will be used to teach skills such as cooking and road safety without danger. The technology is there, but it requires the big digital innovators to work with interested university departments to see this as a good social project and invest. I hope that they are listening.
In his recent appearance before the Lords Economic Affairs Committee, Health Secretary Matt Hancock said that he saw a “series of injustices” in the system but was,
“more attracted to options that build and directly improve on the system than ripping up the whole thing and starting from scratch”.
I welcome the Secretary of State’s interest but wonder whether the Minister can tell us how much longer the wait for the Green Paper will be—a green thread that has run through the debate.
Looking ahead to the next 50 years, Governments should look to a more outcome-focused way of delivering social care for adults with a disability. By incentivising providers to invest in the future of their services, and rewarding them for delivering improved outcomes, we should begin to see the creation of a social care system that delivers high-quality support for adults with disabilities in a way that lowers local authority spending and does not threaten the financial stability of providers.
On a final note, I hope that the newly appointed Minister, Justin Tomlinson, takes note of this debate and, more importantly, takes action.