Supported Living for Adults With Learning Disabilities and Autism

Will my loved one gain or lose friendships? What if they don’t get on with the person they live with?

A good support package should always include the means to support friendships and relationships, including if a large group of people is being split into smaller households. People should be well matched and offered the opportunity to get to know each other before living together. It is a big decision for anyone and very stressful if it doesn’t work out.

It is important to make sure that the environment suits a person’s needs as well. If someone likes to spend a lot of time on their own then they might be better suited to living in a flat with some opportunity to socialise and share support with people in other flats.

Everyone has the right to request a move or a change of housemates. The reality is that changes are often slow and difficult, so planning for ‘right first time’ is vital. Note that in supported living accommodation where the local or health authority holds ‘nomination rights’ over other rooms in the house, the authority will have the power to choose who occupies that room. They will usually consult about compatibility as it is in no-one’s interest to create an incompatible household.

We know of several cases where a cost-conscious local authority has tried to get people to live in larger group living arrangements, without providing appropriate advocacy support or care needs reassessments. This sort of poor practice is much harder to get away with when the individual is a tenant in his or her own home.

Is it easy to transition from care home to supported living arrangements?

It depends. A simple deregistration from a person-centred care home to a supported living arrangement should be smooth and simple, from the point of view of the person supported at least. However, our experience is that transitioning from a more traditional care home can be a bigger step. A steady, considered approach is required here to avoid the scale of change becoming overwhelming. If a person goes to sleep in a care home and wakes up in the morning, following deregistration, in a supported living environment – it is important to think through what will practically be changing? Will he or she have their own food cupboard, for example? Where will medicines, paperwork etc be kept? Who will open the front door?

How much does Supported Living cost?

The total cost is entirely dependent on an individual’s assessed needs. But there are important differences between supported living and registered care in who pays for what. In a care home, the individual’s local authority or health board is responsible for the costs of both support and accommodation.

In supported living, the person is a tenant in their own home and therefore is liable to pay their own rent and other housing costs. People are often eligible for housing benefit (paid by central government) or other benefits to cover the costs of the tenancy. So supported living is usually a much cheaper option for the local authority or health board.

Local Authorities have been accused of pushing for care homes to deregister to become supported living arrangements on cost grounds. In general, we think that is unfair. Supported Living offers a range of advantages, especially for people living on their own or as a couple. For others, it is the principle of choice and control that is key. We’re aware of cases where supported living actually costs the Local Authority more money, but remains the preferred living arrangement.

The worst case is that people are ‘placed’ in supported living with the same disregard for their own and others’ wishes, as can happen in residential care. Of course, this is not a disadvantage of supported living but a question of poor commissioning.

Should I listen to those people who advocate a cautious, step-by-step approach to building my relative’s independence?

Our overwhelming experience is that people with learning disabilities are underestimated, including sometimes by their own families. Irrespective of their background or complexity, it is rare that a person we support in an ordinary house or an ordinary street needs to leave our support through some sort of crisis – though yes, this does happen from time to time.

But how many people with the potential to lead an ordinary life are denied the chance to do so by being wrapped up in cotton wool, by those around them preferring the cautious approach? How many people can never choose what time they get up, eat and bathe? When and where they go out – and who with? Which passions to pursue?

Good environments and approaches will support a person to build their independence. But bad living environments and approaches will make the same claim. Ask yourself how the support will promote your relative’s independence – and compare different approaches.

Are there risks associated with lone working?

A myth about supported living is that there is a greater risk of abuse due to staff working alone in the property. Our experience of delivering support across care home, group supported living and single person supported living arrangements is that if anything, single person services tend to have lower colleague sickness levels, more consistent staffing and fewer accidents and incidents. All of which indicate that in general, single person services are not riskier working environments.

All care environments carry a degree of risk of abuse but we believe that the greatest risk occurs in larger sites with little values-based leadership. It is worth bearing in mind that the major abuse scandals of recent years – Winterbourne View, Veilstone, Mendip House, Whorlton Hall – were hospitals or large registered care homes, not small supported living arrangements.

That said, we acknowledge that the risks of 1:1 support can be very scary for families, especially if their relative can’t talk. As with any good provider, we have a series of protections in place to minimise the risk such as values-based recruitment, training, supervision, team meetings, practice observation, strong engagement mechanisms, regular quality reviews and robust whistle-blowing and complaints processes.

Is Supported Living regulated by the CQC?

We believe that the supported living model does pose a problem in respect of regulation and inspection.

All registered care homes receive a periodic inspection, sometimes unannounced. But because in supported living, people are tenants in their own homes, the Care Quality Commission (CQC) and Care Inspectorate Wales (CIW) do not have the right to enter and inspect the property. They can request to do so and thus a sample of supported living environments do get an in-person inspection. The rest are reviewed through reports kept in the registered office and the CQC is thus reliant on providers proactively reporting issues.

A further point is that if personal care or medication are not being provided in the supported living service, then the service would not fall under CQC/CIW regulation.

Whilst external inspection is not a guarantee, it does give families and the public assurance by putting positive pressure on support providers to deliver a high-quality service. At Dimensions, we support calls for a new inspection model for supported living.

Because of this regulatory problem, both providers and local authorities put their own inspection procedures in place:

Our in-house inspection team, for example, includes nearly 50 people we support, employed as quality consultants, who  often pick up things other auditors might miss. Our senior management teams are frequently out visiting services. Our whistleblowing processes are prominent, anonymous and robust. And we encourage all visitors to anyone we support to contribute by not being afraid to ask questions if anything seems awry.

Finally, in the very rare event that someone absolutely refuses visitors to their house, or where a Best Interests meeting determines that such visits cannot happen, we would usually try to meet the person outside his or her home or in some other bespoke way that allows us to be confident in the support being delivered.

What about Shared Ownership and HOLD mortgages?

More and more people are choosing a shared ownership approach for their (or their loved one’s) supported living arrangement. The advantages in terms of long term financial security – not to mention security of tenure – are obvious. And HOLD mortgages (Home Ownership for People with Long-Term Disabilities) is a government initiative that could help you buy on a shared ownership basis.

Dimensions is working in partnership with MySafeHome to support people to consider whether they could become property co-owners.