Blog by Jayne Knight, Learning Disability England member
The Radio 4 programme, File on 4 on 12th February 2019 looked at supported living and what the increases in unexplained deaths and serious injuries mean for those living in supported living environments. At LDE we believe that institutionalisation can happen in any setting if strong values and principles are not driving how the support is designed and delivered. Good care and support cannot be achieved when economic factors rather than the people supported have come to dominate the shape of available care models.
The programme featured Jayne Knight, an independent advocate, housing and care specialist and a member of LDE. We spoke to Jayne and asked her, on behalf of LDE, if she could give her opinion on what’s good about supported living as it is, what’s wrong about it and what needs to happen for it to improve.
Supported Living – What I am seeing and hearing, Jayne Knight
Supported Living means living in your own home with support to live your life as you want to. It is easier sometimes to describe it as support for living as the model supported living has started to mean something very different to that simple concept. In my view, a great deal of supported living has been hijacked by the Authorities, developers and big care companies and turned into something else. We end up with a housing and care situation so far removed from having the ability to have your own sanctuary, your home, where you feel safe and have chosen people to support you that you trust.
I went to an opening of a ‘ specialist block of flats’ and the future tenants were sitting outside eating the lunch provided as part of the opening ceremony. The manager and others, not any tenants, were cutting the ribbon. Tenants were presenting the bouquets. The manager announcing the opening said very proudly we are X and ‘we are pleased to be opening these flats today because ‘we are the people who work with and house people no-one else wants to.’ This was in front of the people who they were housing and providing care for. Can you imagine someone like Barratts the builders opening a new scheme for first-time buyers saying that? They just wouldn’t ever market that way, but within this model offered to learning disabled people, the people in charge believed it was acceptable and, what’s worse, that they felt were being kind and gracious. I have dreams about where I could have shoved the bouquets!
When I look at housing opportunities for as I have done for over 35 years for people who need housing I ask, what would I do this if I was trying to find accommodation for someone in my own family or me? Not what I want personally because we are all different, but how would I go about it. There’s nothing different about getting housing for someone else. How would we do it within the budget we’ve got? Sometimes there are compromises to be made because of that, for example, we can’t all live in that very expensive, leafy suburb or a large villa with a swimming pool (pity), but we can get good housing within very good search parameters. We can look for very acceptable and suitable options. If what’s most important to you is that you live in a location, you might have to compromise and end up in a larger flat for example rather than a bungalow to achieve that. You never know that block might be near a swimming pool and in leafy gardens. These are the same kind of compromises anyone has to make when deciding where to live; the most important factor is that people with learning disabilities are free to exercise the same kinds of choices, with equal control over them as anyone else.
The way that economic factors such as Local Housing Allowance (LHA) work tends to mean, with some exceptions, that the private rental sector does not offer the same housing opportunities to people with learning disabilities that it does to people without disabilities. LHA is paid at the same rate as the cheapest 30% of housing available in that particular area, which restricts availability to the cheapest, and frequently therefore often the worst housing. There are ways however that housing organisations such as Let’s for Life, another LDE member, can lease properties from the private sector and provide a person-centred housing service with all the safety factors that are needed.
Renting directly from private landlords without someone like Let’s for Life is further complicated for learning disabled people by barriers such as landlord anxiety about support needs, or capacity. Most widely a typical for buy-to-let mortgage contains clauses banning the owner from renting to those in receipt of housing benefits. LHA is also funded from central, rather than local government, providing cash strapped local authorities with an irresistible lure towards the wrong type often of non -regulated supported living provision, where they can claim most, if not all, of the costs back from central government.
Local authorities have to pay the full bill for people in residential care, but in supported living people get housing benefits for accommodation and other benefits for bills. These particular factors combine to create a situation where people are funnelled towards any supported living available, rather than it being the bespoke option individuals can choose to best suit their lives and needs. Where Local Authorities do this right, we see fabulous examples of people with every level of disability having a great life. Where people are treated as a commodity and a good business proposition we see some of the worst provision.
There are three areas most needing to change; 1. Economic incentives, 2. Regulation and inspection, 3. Choice and Control.
1. The supported living market is expanding as people are seen as a commodity and private investment money shapes the choices an individual can make for themselves. Whilst some of these investors are driven solely by profits and disregard for people’s choices, there are sources who would like to be more ethical and who should be encouraged. Many of the better kind of investments come from things like pension funds which lend at a very low rate, 5 or 6% on commercial mortgages. The challenge for these more ethical investors is that they want some kind of guarantee their property will be used and that they won’t be without their reasonable return if the property is then not used by the local authority. The local authorities are loathing to provide this kind of guarantee. How can the bigger national bodies, such as NHS England perhaps help to broker this situation and provide the kind of assurances both assist parties to remove some of the barriers that currently prevent more ethical investors who want to provide good housing and/or support. Some of the best people in Transforming Care are the housing leads in my view. These people have a ‘can do’ approach and can be asked to give valuable help and advice about how to make something work not to stop creative and imaginative proposals going forward by people who just do not understand housing and good care.
2. When you live in your own home (such as a tenancy) it is not inspected. It is the head office of the supported living provider which is inspected. Obviously, we don’t want inspectors just wandering around people’s homes, but not looking at all is not the answer. When people lack capacity, we are subjecting them to a situation which people can take advantage of, and then not even inspect it. For those without capacity who need a tenancy it currently goes through a short judicial process – one potential solution is to introduce an inspection schedule into that tenancy process so that people don’t go ignored. A small layer of protection and regulation which can fit within an ordinary life, rather than an onerous system. Housing advocacy is needed to make sure that people are correctly advised. It should be a requirement that I’m taking up a specialist tenancy arrangement that the social worker has to prove that the tenant or families have received separate independent advice.
3. In 2002 the REACH standards were written; they are still there, still the CQC recommendation, but widely unused. They were relaunched with the Real Tenancy Test by the NDTI and remain very good standards and guidance about the law and practice in relation to supported living. They were called REACH because you can’t always achieve the absolute best right at the beginning, but you constantly aspire to better. There are 11 REACH standards, and if borne in mind throughout the process of choosing whether supported living is appropriate to serve as a simple, excellent guide to whether supported living is really that, support to live a life or just a modern form of warehousing. These standards include things like being able to choose who you live with, where you live, and who provides the support you need. Things which should not be too much for anyone to expect.
Some of the situations that I have seen are so far removed from supporting a person in their own home that they look like the worst type of residential care. Care providers start to think that they are in their workplace and not the persons home. Simple but rude assumptions where staff walk in and immediately put their phone on charge without asking anyone, taking huge liberties with the utilities, leaving heating bills to become huge and not taking care of the tenants’ property. Care companies think it is not a problem to take a room for themselves without permission and make it into a locked office. No one would dream of coming into my home and doing that, but it is often seen as normal practice in supported living
A young man recently out of hospital is being supported by an excellent small care provider rang me last week
He said he liked his place and had chosen the colours of lime green and purple. It looks amazing actually! He then said could I arrange to have the hallway painted. He said to me ‘it’s far too dull Jayne’. He also suggested to the care provider, My Life Choice that they needed to change their cleaning products. Just a few weeks of coming out from the toughest life in a hospital and those simple, everyday wishes being very important.
The joy of knowing you have the safety and security of your home when you put your key in the lock and that everyone who comes there is someone you want and trust in your own home. It’s simple so how does that simplicity end up into something that is so far removed it’s potentially dangerous and limits the quality of some of the most vulnerable people in society.