A home for life: Adult children with support needs

Every parent worries about their children’s future. For many parents these worries fade as children find their feet in the real world, and move on with lives and families of their own.

For some parents, that doesn’t happen.

We have spoken to quite a few parents of adult children with a range of care and support needs, some of which have been extremely complex. They are all speaking to us because they’re worried about where and how their adult children will live when they themselves are no longer in a position to provide the full-time care and support their children need.  

Many of these parents have bruising experience of social care, and are keen to explore ways where they can take the initiative and become less dependent on the whims of policy or local authority decision making.

Creating and delivering these homes is not straightforward. However, the good news is that, with determination, pragmatism, and a bit of luck, it can be done, and done well.

This is a universal problem

In the UK, navigating the adult social care landscape is notoriously difficult. Parents, with some justification, worry about who will stand up for their children when they can’t.

Unsurprisingly, this is an issue all over the world, and there are models that exist to tackle these fears.

For example, in Italy there is a phrase “Dopo di Noi”. It literally means “After us”. It is sufficiently well-recognised to have become a law: a framework that helps families put a home, and the means to run it, into a protected structure for a disabled adult. It takes effect while the parents are still alive and continues long after they are not. A family we know has done precisely this for their son, now in his fifties. He continues to live in the home he’s lived in all his life, and will remain in it for as long as he needs. The structure allows for a live in carer, selected by Trustees, in exchange for taking on the role his parents have always fulfilled.

Sadly, the UK has no single law designed to address this issue. Instead it has a set of tools. Some are financial, some legal, some to do with housing and care. When they are assembled carefully (which is easier said than done), it is possible to create a similar effect – to create a secure home and long term care.

Parental concerns & “wish list”

Once the conversation settles, parent concerns tend to synthesise around a few key points. Parents want:

• Their son/daughter to have a safe and loving home, for as long as they need it. They want their adult children to engage in meaningful activity, with friends. They want to ensure the home cannot be taken away at someone else’s convenience
• To ensure their son/daughter has stability – in terms of the people around them, and the environment in which they live. They would prefer their child to be able to remain in their home for life, if at all possible
• To ensure care and support that is personal, reliable and properly delivered. They also want to know that this will continue at the same standard once they are no longer there to keep an eye on it
• A sense that whatever they create and leave behind will be used for their child, rather than lost to the decisions of others, or circumstances they did not foresee
• To recognise the value of friendships that have been built through the shared experiences of families who have been through their journeys together. They want to find ways to retain and build on these relationships

Underlying everything is generally a wish to take back a measure of control. Parents have often spent years navigating a system that felt indifferent, or worse. They want to avoid having to fight ‘the system’ forever. They want to build something solid and sustainable enough that means any future is less dependent on others.

If we were to paraphrase the “ideal” that parents are looking for, it would be:

“We want a safe and loving home for our son/daughter and his/her friends. We want them to be able to live as independently and fully as possible, whilst also benefiting from being an important part of a small, friendly community. We want to know that the right levels of care and support will always be there, and that our son/daughter will always be happy and treated well.

Ideally, we’d also like a strong say in how the community is created, the people that are involved, and how it can work smoothly with a real sense of care and support well into the future.”

Practical issues to be aware of

Perhaps the biggest factor is that some people need a combination of a specially adapted building and daily care and support to live. That’s not peculiar to this group of parents. It’s what makes supported living and specialised supported housing more difficult to deliver than general needs housing.

Many parents think the key challenge is about finding a suitable property or land on which to create a small community of homes. That’s important, but it’s far from the whole solution, which requires co-ordination and alignment on several separate challenges:

• Yes, finding the right property or land. It needs to be in the right location and setting. It needs to be deliverable (in terms of planning permission and build). It also needs to be available at the right price
• How the land/property project is being funded. Is it being funded by the parent group? Does it rely on a charitable donation? Is it being funded by third party commercial equity/debt? These projects are expensive, and understanding funding constraints early on is essential
• How the on-going service will be structured/funded. Is the care going to be provided by an existing care operator? If so, which one, and do the parents trust them to deliver the quality of service required well into the future? Does the parent group agree on the choice of care provider?  Is creation of a new dedicated care company being considered? What governance should be set up to give parents on-going influence?
• Navigating the Local Authority and other public bodies. Many parents will already have experience of dealing with adult social care, and potentially the NHS and Integrated Commissioning Boards (ICBs). This will generally have convinced them of the need for more influence over their children’s future, not less. Early discussions with all relevant public bodies are the best way to surface potential obstacles, and opportunities.

The important things to get right

Some decisions can evolve as the project progresses; others need to be fixed fairly early on.

The first thing to get right is an early informed view of the parents’ red lines, and which decisions can potentially evolve. This acts as the project ‘north star’ and helps to guide decisions and delivery.

Key decisions to consider, and agree on, are:

• Location. What is the preferred area/location for the development? Is there an absolute limit to how far the development can be from parent homes? Is there council-owned land available?
• Who’s involved? Is this a ‘build it and they will come’ approach, or is it a specific development to meet the needs of a group of parents already known to each other. If multiple families are involved it’s even more important to have an agreed set of principles/requirements early on
• Funding. What funding, if any, is available to invest in the development? The more external funding required, the less influence and control the parent group will have over decisions. Are there other local sources of funding, eg LA grants, s106 funds, charitable gifts? Also, can the parent group contribute?
• Care & Support. Does the parent group have any preferred care models or care providers? Are these care providers willing to engage on this new service?
• Local Authority and public bodies. Are the local bodies supportive of the principle of this development? How can they help to bring it to life? Do any of the occupants already receive Care Packages or Personal Health Budgets? Can this new service help to address the costs of people currently living outside their county

A summary of the absolute red lines, and which areas can be more fluid, will provide a solid basis for the project and for discussions with potential partners.

More of a process point, but in our experience, it is essential to involve as many of the prospective partners as early as possible. Open and transparent collaboration is an absolute requirement for success. Each party brings its own perspective and helps to create a blueprint that works for everyone. True partnership makes success far more likely, and at the very least helps to avoid unnecessary disagreement later on, when the costs of rectification are greater.

Exemplar schemes

The number of parent-led initiatives that progress to actual launch are limited.

There are many that start, but most fall by the wayside when it becomes clear just how much work and commitment is required. That’s not a criticism. The very people who want this are 100% occupied with daily support and care activities for their children. Finding the time and space to work on a challenging development project at the same time is tough.

We are aware of two schemes that have been delivered successfully, and three further schemes that are making good progress, and which stand a good chance of coming to life.

Perhaps the ‘best in class’ exemplar for an ambitious service like this is Linden Farm in Surrey.

• The original idea came from Peter and Sally Lawrence, whose son Simon is severely autistic
• They were concerned about the lack of suitable local homes for Simon and didn’t want him to live too far away
• They set up The Simon Trust and identified a suitable site. They developed a vision for a “home for life” and then presented the proposal to their local authority, Surrey County Council
• The proposal was for 10 homes on a very generous rural plot. The development includes communal activity space and space for on-site support staff
• Surrey CC adopted the project, purchased the land, funded and developed the supported living scheme, and later, also procured the care provider
• The parents were heavily involved throughout, and the Simon Trust governance allows for continued parental representation and influence

Managing expectations

As parents, we absolutely understand the desire to provide the best lives for our children. It’s one of the most powerful instincts.

However, as may have already become clear, delivering bespoke specialised homes is difficult, challenging, and time-consuming. These projects are measured in years, not months.

It’s also important to understand the challenge of co-ordinating many different parties, each with their own interests and capabilities. You have no direct control over any of these, just influence and persuasion. The best approach is to present the specific benefits of your plans to each partner. That could be cost savings for the Local Authority by bringing people back to live locally; improving current social care waiting lists; offering care providers a specific service to enhance their network in an area; or offer developers a more attractive route through their s106 affordable homes obligations.     

In short, these projects are neither quick nor straightforward, but done well, they can deliver fulfilling, safe, and secure futures for adult children with care and support needs well into the future. That should be a target worth aiming for.

Next steps

In the first instance you need to engage with your Local Authority.

Before contacting them, you should draft a summary/proposal document. This should outline your personal position and broad plans, including; location, unit numbers, needs of occupants, space requirements, broad costs and cost savings, care provision, and what help and support you would like from the council.

The better thought-through the document, the greater the chance of making a good first impression with the council, and encouraging them to engage in further positive discussion.

If you feel like you could benefit from guidance on drafting your initial pack, and how to contact the right person in your local council, please just contact hello@coral-living.co.uk.