Managed Living Environments
Edward Pureheart’s very own Forever Child, Kate lives in the first Managed Living Environment and Edward lives in her garden
- RESEARCH – the problem
Professor Rachel Forrester-Jones of Bath University has completed a research project for MENCAP entitled ‘Confronting a Looming Crisis, people with learning disabilities and/or autism and their carers getting older’. She concludes that there are very few, if any, schemes that deal with this looming crisis. The value placed on the care provided by parents is close to £9b and will need to be paid for by the public sector when those parents die.
Rachel interviewed carers in their nineties with children in their seventies that still require care.
The parents live in fear and anxiety that, when they die, their loved ones will not be properly cared for in a system that currently has many flaws. They ‘hope’ that family members and social services will somehow figure out what’s best for the LD person, without knowing exactly what will happen.
- MANAGED LIVING ENVIRONMENTS – a solution
A Managed Living Environment is a proposed solution to this problem and is different to any other model because it is anchored by a company, a property and a salaried key worker. This gives the model sustainability. It is particularly suitable for people who combine Learning Disability with epilepsy and autism or any other debilitating condition.
I’m bringing skills acquired in running small businesses, developing property, having tenants and being the parent/carer of a person with a Learning Disability, Autism and Epilepsy for over forty years.
In Sutton, London we have the first model of an MLE that has been running since 2015. It suffered some setbacks due to the pandemic as a tenant left and we were unable to replace her at that time. On the whole, however, it has been a great success. This is in spite of the fact that we have had to break new ground in every area. The most important person in the MLE, our tenant, has been safe and happy while enjoying a degree of independence.
We have had to feel our way in many areas and have unavoidably stepped on some toes and poked some bears. All this means is that we have learnt a lot and are now ready to share some of that knowledge with others. We’re moving forward with great optimism now, and not because we think it’s easy, but because we think it’s possible.
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- HOW DOES AN MLE WORK?
Each one of these steps has many sub-steps and different ways of accomplishing the same thing, but the following are the steps that interested parties will take:
- Start a company to provide care services and accommodation
- Adapt a property – two or more complete flats and a space for carers to do admin work and sleep over.
- Get planning permission and change to C3 if possible
- Employ a key worker with a job description and a contract. This worker provides care and recruits other carers to work other hours. He/she does admin work and maintains the property. They require usual employment benefits. This ensures loyalty and commitment and reliability.
- Find two persons with similar needs to occupy the apartments. Both must qualify for overnight care.
- Apply for benefits: Housing Benefit/ Council Tax benefit and Direct Payments to cover the costs of the Rent and Care and other benefits that LD people can qualify for to cover the bills and personal expenditure
- Ensure the future of the project through Trusts, wills, insurance policies etc
- WHO IS THE COMPANY’S CLIENT?
The tenants are the clients and not the Local Authority or Social Services. This means that they are invoiced directly by the company, and they get help to pay their bills. This is the only outside help they need to run their affairs. It means the tenants can ask for their carers to be changed – they employ them. This is flexible and we are in negotiations for a contract with the local authority.
- LEGAL ISSUES
Tenants sign legal agreements for their tenancy and their care. Workers are properly recruited and vetted by the key worker. Workers are insured. Tenants have the right to complain about any area of the service they are not happy about.
Agreements are required with family members or others, who will help with managing money and will commit to retaining the property for the length of the tenants’ lifetimes.
- FINANCIAL ISSUES
Obviously, this is not the cheapest solution and is not for everybody, but if we can get our tenants set up with right number of care hours in Direct Payments, the right contributions to bills and service charges, and the right Housing Benefit, then it is a viable not for profit company.
I believe we need legally binding contracts with the government to ensure that our loved one’s wishes are respected, and their rights protected after we die.
- MAJOR BENEFITS TO TENANTS
- Independence
- Peace of mind
Dealing with emergencies and even everyday things is overwhelmingly difficult for LD people. An MLE takes on these tasks and allows the tenants to concentrate on their interests without worry.
- Sustainability
A company’s shares can be gifted to family members without tax implications. A salaried staff member provides continuity.
- Flexibility
Tenants can choose when to have meals, baths, outings etc
- Safety balanced with freedom
Staff are trained to give tenants as much freedom to live normally as possible without allowing anything to endanger their health or well-being. There are always many carers involved in a MLE and so tenants are monitored and have opportunities to talk to different involved individuals.
- Self esteem
Tenants view themselves as living in their own homes as other people do. They are not patients or clients. They can choose their lifestyle within the rules and they can be proud of their homes.
- A pleasant and normal way to live – or close to it
Tenants can have a garden, a pet (within reason) and other things that people who are not either alone or institutionalised have.
- Choice
Tenants can choose their activities, their meals, their carers and many other things that people normally choose for themselves.
- Sharing
Costs can be shared, and tenants have company from at least one other person who is like them. Tenants always have at least one carer present in the house and looking out for them, even if they don’t have enough hours in their care plans for that.
- Cover
The key worker is a salaried person and so makes sure that the tenants always have care. This is different to contract workers who may or may not turn up to work.
- THE FUTURE
A quick read of AnnIe’s Story (below) can give you an idea of some of the unforeseeable problems that can come up in the life of a person who cannot think as well as some others. People who have difficulty with thinking are not the same as people who cannot see, hear or walk properly. They are far more vulnerable, especially if they have a life-threatening illness like epilepsy. To leave them alone to cope in a world that is difficult enough for most able people is cruel and irresponsible. This is the thing that we have to campaign on.
Learning Disability is a euphemism because the inability to learn is nowhere near as dangerous to LD people as their inability to think well.
While we do want to respect LD people and protect all of their human rights – even self-determination – we have to be pragmatic and accept that some challenges in life are simply too much. Just as we would not leave children to cope on their own, we should not neglect our duty to LD people. If they were, in fact, children when we die, Social Services would insist on adoption or some other protection, but because they are not, they suffer through ‘neglect in the community’, even though their needs are no less than a child’s. They need support and protection to feel safe and secure. This is not something that we, as parents can leave to chance.
If we could make the MLE a widely understood and supported ‘thing’, in the same way that Supported Living is a thing, I think we could have a chance of a better future for LD people. Supported Living is not for everyone, neither is Shared Lives or Care Homes. On the surface, they may seem admirable but the devil, as always, is in the detail. When you get down to the nitty gritty of everyday life, you will see that they are not enough – not by a long way.
There is a place for the MLE but it has not yet been recognised by those that need to support them in order to get them funded. It is not the easiest or cheapest option. It requires sacrifice and hard work, but it is very rewarding and probably the best way for LD people to live after their parents die.
Our greatest challenge for the future is to create A BOX that can be ticked in the Local Authority so that MLE’s can be funded and supported properly by Social Services.