Tell It As It Is: My New Home

Chapter 1

What is Supported Living?

Some of you will have heard of supported living, some of you may already be using this way of looking after themselves or a family member. That said, there are also many people that we have spoken to that have either not heard of supported living, or do not really understand what it means.

The main differences between supported living and residential care is that you, the parent or carer, and the person seeking care themselves, are able to make more of your own choices.

Perhaps it might be helpful to first tell you what residential care should be providing to each resident. In residential care, there are usually several residents living in their own room but under the same roof in the same property. One of the most important issues in residential care, is that the care provision is provided by the care home; you do not usually have a choice.

You may be thinking to yourself, What do these two people know about residential care? What do they know about autism? Well, it’s fair to say the answer is, Quite a lot! When it was time for our son Chris to move from his final school, we visited eleven different residential care homes before making our decision. It’s also important to know that right from the day we received our son’s diagnosis – aged two years and nine months – we started studying online, reading books and talking to those that were already affected by autism within their family.

That is why, after over twenty years of living with autism, we are confident that we can help others. As mentioned, we have already written two books telling as many as possible about how our lives had been affected and how we resolved many problems.

That choice we made for Christopher’s first residential home appeared to be right at the start, but our opinions were changed after two years, when the home was found to have abused and neglected our son. The home was put into safeguarding for many months and a specialist care company given the responsibility to look after him. In the years that followed, we worked tirelessly to find another care home, looking at over seventy-five homes from near and far. Alas, for one reason or another, our search was in vain. Those that were suitable were full and because of their care and expertise, would likely remain that way. Many that we visited were extremely good but were honest enough to tell us that they did not believe they could offer the care that our son needed.

Each residential care home has a registered manager and a team of people looking after the residents. We are going to use our son Christopher’s experience in a residential care home and explain how things went for him.

First, let us look at food and the menus provided for the residents. At Christopher’s home, it was generally the registered manager or staff that decided what meals they would provide, which straight away meant that a choice had been taken away from our son and his fellow residents at the home. In fact, at this particular home, there was only ever one choice, and until we made numerous complaints, there was no easy-read menus for the residents, just text with no pictures.

Having visited many residential care homes in search of a new home for Christopher, we must emphasise that we did find a couple of very good homes that did indeed allow the residents to choose their own meals. However, most homes we visited, and the one that Chris was at for five years, were dictated to by a budget and making sure they kept well within it.

Another choice that is taken away from residents is being taken out when they want to and going to places of their choosing. Even if, like Chris, the resident has his or her own vehicle, you are still very much dependent on the home providing a driver.

Here are some quick tips for you before making any decisions:

•Find a care home that listens.

•Don’t be fooled by bright lights and pretty colours. That was one of our mistakes.

•Check out the CQC² (Care Quality Commission) reports and look for any underlying problems.

•Look at as many homes as you can. Remember, we looked at over seventy-five when we realised Chris had to be moved.

•Make a list of all the questions you want to ask. Take the list with you and don’t be afraid to take your time and write down the answers. This will show each of the homes you visit that you mean business, and that you want to make the right decision.

•Many care homes are managed by large companies. You need to be able to assess how much involvement that company has in each home, or if the residential manager is allowed to make important decisions.

•Watch, if you can, how other residents are treated when taken out in the community. This can often tell its own story, demonstrating that the home may not be the right one.

•Plan ahead – Do Your Homework.

Something very important within residential care and indeed in supported living, is how much will it cost you or your child. Do they receive DLA (Disability Living Allowance) or PIP (Personal Independent Payment)³? Do they have savings above the allowed limit? Are they fully or partially funded by your local authority? Your local authority will complete a financial assessment, often without any consultation with the resident or their parents or those responsible for them, and decide how much the resident should pay towards their care.

There are charities that can assist with this, so don’t feel like you are on your own. One such organisation is SARC (Southampton Advice & Representation Centre)⁴. SARC maybe not in your area but might still be willing to help. If not, use Google or Citizens Advice, who will be able to point you in the right direction. Another charity that can help is the National Autistic Society⁵ – give them a call.

Our son’s financial assessment was completed by our local authority without any consultation with him or us. After a bit of a battle, we proved that his income was so stretched by other expenses that his contribution was revised, and he had to pay zero towards his care.

Finally, you need to make sure the ‘smiley’ faces you get on your initial visits are likely to continue. Look and listen to see how staff treat others in the home during your exploratory days.

So, having told you what you need to look out for in residential care, it is time for us to move on and tell you more about supported living.

Before doing so, let us first look at the difference between the word 'help and the word support". Many people think they mean much the same.

The OED definition of support is: To give assistance or encouragement to, provide with a home and the necessities of life.

The definition of help is: To make it easier for someone to do something, to improve a situation, to be a benefit to.

At no point does either definition mention doing everything for someone.

Have you ever thought about the difference between help and support?

Here is what we have found that makes things a little clearer.

Help is usually task-orientated and focuses on addressing a specific need at a given moment. On the other hand, support involves a deeper and more sustained commitment. It’s about being there consistently for someone, offering encouragement, emotional backing and being a reliable presence. Support is an ongoing process aimed at aiding someone to achieve whatever they want to do.

At no point have we ever read that supporting someone means doing the whole task for them, if they are capable to do some things for themselves. If that were the case, they would learn nothing and would effectively be receiving much the same as when in residential care.

We believe that supported living is about teaching someone to do some things for themselves.

If there were rules to supported living, what might they be?

There are no rules set in stone for supported living, other than that the carers should keep the person safe and see that the person they are caring for has a happy and positive future ahead of them. The care company are answerable to the CQC and must act within the law. In fact, a better word to use is expectancy. What should parents and those responsible for arranging care for someone expect to receive from carers in return for the money they pay?

Let us consider that if there were rules, what might they be, and what might be the guidelines that carers could follow.

•A friendly face that leads to being trusted and approved by the resident.

•Patience when trying to show the resident how to do something and it does not go as expected.

•To work to a schedule that has been agreed with the parents, care management and carers, which can be followed for the whole week ahead.

•To ensure that the resident is included in all tasks. At first, this may mean doing only a little, but with guidance, this eventually means the individual can independently carry out that task from start to finish.

•Implanting a new skill to the individual that you are well conversant with, in the hope that they may well enjoy it and want to do it further to enrich their lives. It is very similar to that of a parent who spends much of their time helping and empowering their children.

•Being a companion to the individual, and having conversations and interaction, teaching housework, cooking and many other things that we all need in our lives. Having the human contact is so valuable, particularly someone who has experienced great difficulties in their past. If the person is non-speaking, it should be remembered that they can almost certainly hear you and they will want to hear you. They should be included and given the same respect and opportunities as those that can speak.

•Almost each and every one of us loves looking at their mobile phone. It is a habit! So many of us look even when our phone has not even been called! Even as parents, we should avoid using our phone when visiting our child in their home. It is vitally important that 100% attention is given to the individual; 90% is not enough. Answering a non-urgent private phone call can account for that missing 10% of the time that should be spent interacting or caring. Distractions can be the reason for the onset of an unwanted behaviour from the individual, to say, Look, I am still here! Texting or even scrolling on phones is also a form of neglect, and a sign that we are ignoring the individual, which in turn can attract unwanted behaviour from them.

•When a person has two-to-one care, it is for a very good reason and the two carers should not spend their time simply talking to each other. That means the individual is neglected once again.

•Inviting the individual to choose all their meals is vital. They need to be included in preparing and cooking each of their meals. This may mean starting off doing very little, but the aim is that, in time, they should be able to cook a meal almost independently. It is important their choices are not taken away. Even if the carer or carers do not intend to eat at the same time as the individual, at least one of them should sit at the table. Eating alone can cause problems and takes away the family atmosphere that is needed. It is the opportunity to learn a very good social skill, a ‘coming together’.

•Choice is everything. The individual should be given the right to choose, whether that be what to eat, when to eat, where to go, what to watch on television or on the computer, what to listen to on a radio, and so much more. Choices must never be denied unless they are a danger to the individual.

Finally, remember that as holders of a Personal Health Budget⁶, or if you are responsible for paying for the care yourself, you have one very important choice to make. That choice is who you would like to care for your child, and we will help you on this matter a little later.

We made our choice on behalf of Christopher. We wanted, fought for and got our choice of care provider. We wanted a company that was not massive, a company that cared, that included the behaviour approaches that we felt passionate about, and that were not just person-centred but tailored to Christopher’s needs. Finally, we wanted a company that was prepared to listen. After much hard work, we have what our son deserves, a company that meets with all of the criteria that we set out to achieve.

Chapter 2

Why Choose Supported Living?

So, the big question is Why choose supported living over residential care?

Having found out so much about supported living and being able to compare it with the residential care that Chris received, the answer was easy for us; a ‘no-brainer’ as many would say.

Our biggest regret was not finding out about it or being told that supported living existed before we decided to place our son in residential care. Let us make something clear – we are not comparing supported living with every residential care home, as there are many out there that provide excellent care.

There are, of course, many people that might struggle with supported living and find that residential care is the answer for them. Of course, that is their choice, or should we say, the choice of those that hold a deputyship or power of attorney for the person.

Although we originally started with a list of eleven homes when Chris had to leave Hill House School aged nineteen, many of those were full to the rafters because they were good. Others that we looked at were not up to giving our son everything that we knew he needed.

Eventually we made a decision, having whittled the list down to two.

Unfortunately, after Chris had been in the home we picked for over two years, we found out that we had made the wrong decision. We were fooled by the fact that it was a new home with bright sparkling paint and had a flat available for Chris within the complex that provided homes for six autistic young people in total. What’s that old saying? Never judge a book by its cover. So true in this case, although for the first couple of years, things were not too bad.

Things happen, management changes which can severely affect the way a home is run, and before you know it, you are on a slippery slope.

Let us tell you what we have found out about supported living that truly excites us and that we feel is right for Chris.

In supported living, he has his own home, a beautiful, renovated bungalow that has been split into two flats. He has his own front door, with his own set of keys. As long as he is accompanied by his carers or parents, he is free to come and go as he wants. There is far less restriction over what he chooses to eat and when he chooses to do so.

The environment is so homely, and the staff help to create such a friendly atmosphere. This is such a contradiction to the residential home he was living in for five and a half long years, where his life was led by dictatorial attitudes. This led to complete and utter boredom for Chris, culminating in bad behaviour, because no one was engaging in a meaningful activity with him.

Where Chris lives now, the staff are gradually getting better at working on meaningful intervention, slowly but surely teaching him the skills he will need for the future. Teaching him daily routines, letting him know he is free to plan his day as he would like, but also impressing on him how he might make the day better. The route of good, supported living is demonstrating how to do something but not doing it all for the person.

As you will read later, Christopher is also somewhat better off financially. Achieving this is not easy, as you always feel you have the local authority on his case to ensure he only gets what they believe is necessary for him to live on. However, what we believe is that the authorities do not truly understand people like Chris. They do not realise that a person as complex as our son needs more specialised carers, and to have a constant flow of places to spend his time, all of which costs money that must come from either Chris’ pocket or ours, as his parents.

As we progress further into this book you will find out why we tend to liken Social Services to a local taxation office, always ready, as soon as they hear Chris has a bit more income, to take it away from him! However, this is something you need not worry about, as we will be advising you ways around problems such as this. We will introduce you to a very good charity that you can trust, and that will give you expert advice you need.

Another very important thing to remember as parents and legal deputies, is that you have the right to apply for a Personal Health Budget which you can use to choose carers that you want to look after your child. Once again, there may be attempts by the local authority to take that choice away from you. Please do not worry; we have been through this and will help you to overcome any opposition.

Having got the right carers for Christopher in his bungalow has brought to light one of the most important things we have noticed since his move. Namely, that having the right carers working with him, Chris is so much calmer now, he is happier now and most certainly far less aggressive. Those three things alone have proved to us that all of the battles to get our son his own home, with carers he can trust, has been well worth it.

If we are honest, we would have dearly loved to have purchased Chris his own home, rather than go down the renting route. How could a young man with severe autism and no job be able to purchase his own home? Hard to believe, isn’t it, but trust us, it