A comprehensive guide for older carers of adults with autism or a learning disability

Whether you’ve been caring for a loved one their whole life, or you've taken on the responsibility more recently, it can be daunting to think about someone else managing their care.

As you grow older as a parent or carer of someone with support needs who is still living at home, the future can feel scary and uncertain. Although it might be difficult to consider someone else taking on the responsibility of your loved one’s care, there may come a time when they need to fly the nest. It’s important that you have a plan in place to ensure that both your needs and those of your loved one are going to be met, as you both get older.

It can be reassuring to know that you’re not alone. The 2011 census revealed that there are over 1.8 million carers aged 60 and over in England, whilst the number of carers over the age of 85 had grown by 128% in the last decade. 

Why should I get support for my loved one?

It might seem obvious to say, but as a carer for someone with autism or a learning disability, you will only ever want the best for them. So as you age and caring for a loved one becomes more and more difficult, you’ll want to ensure that the level of care they receive remains the same.

For example, you could develop health issues of your own, or become incapable of offering the same level of care that you once could. It’s therefore sensible to start looking for suitable care options for someone living with autism or a learning disability, before it becomes a necessity, so that an informed and sensible decision can be made together.

Ross moved to Lifeways after his parents realised it might be time to look at alternative care options once they reached their seventies.

“When Ross turned 37, we started to realise it might be time for Ross to leave home. We were both in our seventies, and as we were getting older it was becoming increasingly difficult to look after Ross, even with the support of a carer for a few hours a week.” said Ross’ mum, Annie.

“Ross’s personal care and eating was our main concern, but since he’s been here, he’s eating really well and has put on weight. He’s really enjoying his life here - he’s happier, has made friends, and loves his support team.”

How do I know if my loved one is eligible for support?

In the UK, there is a minimum threshold at which people are entitled to support from the government. For example, if they are unable to manage and maintain nutrition and maintain personal hygiene, they would be eligible for a full needs assessment. As an older carer, maintaining a good level of care for these requirements could get more difficult, and so it's important to start thinking about how these will be maintained moving forwards.

There is a list of requirements your loved one will have to meet in order to be eligible for support, and they must need assistance with two or more of the following:

● managing and maintaining nutrition
● maintaining personal hygiene
● managing toilet needs
● getting appropriately clothed
● being able to make use of their home safely
● maintaining a habitable home environment
● developing and maintaining family or other personal relationships
● accessing and engaging in work, training, education or volunteering
● making use of necessary facilities in their local community, including public transport and recreational facilities
● carrying out any caring responsibilities they have for a child.

If you believe at least two of these requirements are met, speak to your GP or get in touch with your local council to arrange a full needs assessment.

If a full needs assessment is identified as the next step, use it as an opportunity to share your needs and wishes for your loved one and for your family. Your loved one should be included, encouraged and supported to make their own decisions, wherever possible.

​​What are the benefits of support?

Getting support for your loved one can feel daunting, but there are many benefits that come with it. 

At Lifeways, your loved one will be supported to maximise their independence and achieve their goals, whilst also being given the opportunity to make new friends and pick up new skills and hobbies.

Your loved one will have their own space and the reassurance of extra support, and you’ll have full peace of mind that they’re safe and cared for. You’ll still be able to stay closely connected, and will be encouraged to spend as much time with your loved one as you’d like. 

We often find that relationships grow and blossom when the people we support move into their accommodation, as the responsibility of daily care is eased, and there’s more room to create lifelong memories.

“It’s the best of both worlds - we can come any time to visit, but also it’s lovely for us to be able to go out now, visit friends, go shopping. And Ross and Tara (his sister) get on better now than they’ve ever done before,” said Ross’ parents.

What are the options for support?

At Lifeways, there are two types of accommodation on offer for those that we support. 

Supported living is a service primarily for those living with complex conditions to live in their own homes whilst being supported to maintain or increase their level of independence. Residential care is for people living with more complex needs who require 24/7 specialist care.

Who is supported living right for?

People living in supported living accommodation will have a tenancy agreement and be responsible for any bills, the cost of any furnishings and for the general upkeep of their home. Supported living is ideal for those who live with some level of independence, although 24/7 support can still be provided where required. 

They will have the opportunity to live with like-minded people, and can play an active part in the local community. 

Who is residential care right for?

People living in residential care are likely to live in communal-living homes with a team of staff on hand to support them and the other residents. Your loved one will have their own bedroom and will share the communal areas of the property such as living areas, kitchens and dining rooms. This type of care is suited to individuals that might require 24/7 support in specially adapted locations.

The consistent hands-on support, mixed with individual privacy and the opportunity to socialise and spend time with others are all wonderful benefits of residential care.

Gillian suffers with cerebral palsy and severe learning difficulties. Until early 2018 she had lived with both her parents in the family home and attended a local day centre. Sadly, Gillian lost both her parents and moved in with her brother and his family, who felt that Gillian might actually be happier in her own home.

“After family discussions we realised we wanted to give Gillian the chance to live more independently in her own home for the first time in her life. From the start the local Lifeways service appeared to be the perfect place. The manager spent so much time with us and Gillian, ensuring that every need and concern was considered.

As a family we are so grateful for all the help we have had from every member of Lifeways. All the staff at Gillian’s service are an absolute credit to the organisation,” said Gillian’s sister-in-law.

How to decide between supported living or residential care?

This decision is based on a number of factors, but predominantly rests on the type and amount of support required. Both supported living and residential care can offer 24/7 support, though residential care is more suited to those living with more complex needs.

If you decide to start the process through Lifeways, we’ll make sure to guide you every step of the way, ensuring that you have the relevant information and resources in order to make an informed decision that’s right for you and your loved one. We can also help with putting you in contact with your relevant local authority and making sure you feel supported every step of the way.

Making the move from the family home will be a big period of change in your loved one’s life, especially if they’ve lived there well into their adult years. It will also be a big change for you - the one who has been caring for them until now.

How to seek support

If you’ve made the decision to explore alternative care options for your loved one, it might be daunting to know where to start. The first stage is always to contact your local council or social services department. You may be able to do this online through the council’s website, you’ll just need to find the appropriate contact details for your relevant council. 

The UK Government’s website has a handy tool to help. Just input your postcode and it’ll direct you to the relevant council’s website. It’s worth noting that usually you’ll need to contact your county council rather than your district council, as they tend to facilitate social care. 

Alternatively, you can book an appointment with your GP who should be able to provide a referral to the appropriate provider.

How can Lifeways help?

We will keep you involved in any decision making, or any changes we might propose to make to your loved one’s care. You can find out more about planning for the future here, or get in touch to make an inquiry about care for your loved one.