Working in learning disability services, I have become increasingly concerned about a relatively small group of people who are too easily lost in the wider social care debate.
They are people with severe or profound learning disabilities, people with profound and multiple learning disabilities, autistic people with very high support needs, and people whose distress may be expressed through behaviours that challenge services.
They are not the largest group within social care, but they are amongst the people for whom getting support wrong has the greatest human and financial consequences.
At One Trust, we see this every day. We see families who have cared for a son or daughter for decades and desperately want them to remain at home. We see young people approaching adulthood whose future needs are entirely predictable, yet suitable adult provision has not been developed. We also see how quickly the range of available services narrows when someone has complex health needs, requires high staffing levels, needs specialist Positive Behaviour Support, or depends upon a carefully structured environment to remain safe and well.
I do not believe commissioners or social workers want this situation. In my experience, many are trying to do the right thing while working within extremely difficult constraints. Demand is rising, budgets are under enormous pressure and they are constantly being asked to demonstrate savings.
The problem is that this can encourage short term decisions that create much greater costs later.
If someone with profound disabilities is living successfully with their family, attending a specialist service and receiving the right level of support, that stability has enormous value. Reducing a package by a few hours, challenging one to one support or negotiating down the price of a service may create an immediate saving on a spreadsheet, but if that decision contributes to a family reaching breaking point, the eventual cost can be far greater.
Nobody is going to thank a commissioning body for saving a few thousand pounds if the outcome is the collapse of a family care arrangement and the need for an expensive residential placement that may cost well into six figures every year.
For this group, prevention is not just good social care. It is good economics.
Families should be supported to continue caring where that is what they and their relative want. That means proper daytime support, respite, transport and access to specialist services. It should never mean relying on parents until they are exhausted and then intervening only when the situation has become a crisis.
We were supposed to have learned this after Winterbourne View.
One of the clearest lessons was the need for good quality support close to home, yet people with learning disabilities and autism are still being placed far away because suitable local provision does not exist. Too often the system becomes active only when a placement has broken down, a parent can no longer cope or a young person is about to leave school.
That is not really commissioning. It is crisis management.
This is particularly obvious during the transition from childhood to adulthood. Local authorities and health commissioners often know years in advance which young people have profound disabilities or very high support needs. They know when those young people will leave school and they can broadly anticipate the type of support they will require.
Yet families can still arrive at adulthood and discover there is nowhere suitable for their son or daughter to go.
The young person’s needs have not suddenly changed. Their epilepsy has not disappeared. Their autism has not become less significant. Their need for personal care, communication support, sensory regulation or specialist staffing remains exactly where it was.
What has changed is the system around them.
Transition planning has to mean more than reviewing an individual care plan. It has to include planning the market and creating capacity before it is needed.
That brings me to the role of the third sector.
The state already relies heavily on charities, voluntary organisations, social enterprises and specialist providers to deliver care. Any future National Care Service must therefore be built in partnership with that sector, rather than treating providers simply as suppliers whose prices and terms can continually be dictated from above.
Commissioners themselves are often being pushed to achieve savings that are increasingly difficult to deliver. I understand that pressure. But if the response is continually to squeeze provider rates, something eventually gives.
Training becomes harder to fund. Recruitment becomes more difficult. Staff turnover rises. Investment stops. Providers reduce capacity or leave the market altogether.
When that happens, the apparent saving disappears and commissioners are left with fewer options, less competition and a more fragile system.
This matters particularly for people with complex needs because the market is already relatively small. Specialist services require skilled staff, proper training, suitable buildings, transport, strong leadership and, in some cases, clinical expertise. These things cost money.
If we want those services to exist tomorrow, we have to make sure they are viable today.
I would like to see a much more open and confident approach to the market.
Becoming an approved provider should be simpler and more proportionate. Commissioners should absolutely carry out proper due diligence, looking at governance, safeguarding, staff training, financial stability, incidents, complaints and outcomes. They should visit services and, most importantly, speak directly to the people using them and their families.
That is useful scrutiny.
What we should avoid is creating such a burden of bureaucracy and procurement that good organisations are discouraged from entering the market or spend disproportionate amounts of time proving the same things to multiple public bodies.
Once a provider has demonstrated that it is safe, capable and well run, we should allow individuals and families far more say over who supports them.
Where possible, funding should follow the person through spot purchasing, individual service agreements and properly funded direct payments. Long block contracts and closed frameworks can sometimes create certainty, but they can also reduce choice, shut out smaller organisations and leave a market dominated by one provider for years.
Competition can be healthy if the market is properly regulated.
If several good providers are available, they will have to demonstrate quality, value and responsiveness. If one particular provider is repeatedly chosen by families, that should tell commissioners something. It may simply mean that people trust that organisation because it is good at what it does.
Choice itself can be an important measure of quality.
Of course, direct payments and personal budgets only work if they are funded at a realistic level. Giving a family a budget that cannot purchase the service their relative actually needs is not genuine choice. It is simply transferring the commissioning problem from the public body to the family.
There is also a difficult conversation that social care has to be prepared to have.
People with mild and moderate learning disabilities deserve excellent services, opportunity and support. But someone who needs several hours of help each week is not in the same position as someone who requires continuous specialist care.
A fair system must recognise that.
Resources should follow need, and sometimes that means spending significantly more on a relatively small number of people because the consequences of not doing so are so serious.
This cohort may be small, but it is critically important.
If we can support people with the most complex needs to live good lives close to their families, avoid unnecessary hospital admissions, prevent residential breakdown and maintain strong local services, then we will have achieved something genuinely valuable.
My hope for social care reform is therefore quite straightforward.
We need to plan earlier, support families before they reach breaking point, help specialist providers grow, give commissioners the freedom to think beyond short term savings, and treat the third sector as an equal partner in whatever National Care Service eventually emerges.
Above all, we need to remember what success actually looks like.
For many people with the most complex needs, it is simply a good life, close to the people they love, supported by people who understand them.
That should not be too much to ask.
