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Common housing options for people living with Tuberous Sclerosis Complex and advice for getting the most appropriate option for you

Tuberous Sclerosis Complex (TSC) can affect a person’s health and day-to-day life in different ways, with the extent being different for every individual, their family and loved ones. For some people, TSC will impact on how and where they live.

Researching and organising a place to live can be confusing and frustrating. Here, the Tuberous Sclerosis Association (TSA) has provided an overview to help you get to grips with your options and what to think about.

Whether it is living fully independently, moving into an adapted home, supported housing or residential care, it is important to think about housing options for now and the future.

What to remember when thinking about housing

If you are looking at housing options for yourself or a person close to you living with TSC, there are some important things to keep in mind beyond the type of housing that you choose.

If you are looking at housing options for yourself or a person close to you living with TSC, there are some important things to keep in mind beyond the type of housing that you choose.

Frustratingly, the availability and suitability of different housing options can be dramatically different depending on where you live in the UK. If you find something in one area of the UK that is a good fit for you, there is no guarantee that the same thing will be available elsewhere. The length of time you could be in a waiting list could also vary depending on location.

It is important to get under the skin of housing and to be confident in the options that are available to you:

  • Understand the property types that are available and think about what could be best for your situation
  • Visit and look more into the local area or housing that you are thinking about – does it have everything that would be needed? Is it accessible? Is it easy to travel to places like school, work or clinic appointments?
  • If possible, talk to other people in a similar situation – it could help you to get a clearer picture of exactly what you are looking for
  • The Care Quality Commission monitors, inspects and regulates social care services. Looking at their inspection reports could be helpful in choosing housing (see here)
  • You may wish to discuss options with health and social care professionals who are already familiar with your situation. A care needs assessment could also be useful, if appropriate

Remember, the people you are dealing with when securing housing might not be aware of TSC. Be persistent to ensure that everyone involved in any decisions about housing are fully aware of the impact that TSC can have on the lives of individuals and families.

It could be helpful to provide health and social professionals with printouts from our website or some of our guides about TSC

Getting help – adaptions for accessibility, support funds and benefits

If you have already secured suitable housing, it is common to need adaptions to make the property more accessible. This could be minor updates – such as fitting a ramp, lever taps or grab rails – or larger improvements like lowering worktops or widening door openings.

For minor adaptions, you should contact your local authority for help with getting them installed. If you need something larger doing to the home, applying for a Disabled Facility Grant through your local council could help pay for the cost.

You could also apply to our support fund to help with any home improvements. Further information about housing benefits and support more broadly, including the TSA support fund, can be found here.

Different housing options

There are different housing options available to people living with TSC, depending on their individual circumstances and those close to them. By better understanding each option, you can come to a more informed decision.

Adapted properties that have been designed for people with additional needs can be rented, either privately or through a local authority, housing association or charity. Although this is often a preferred option, it can be difficult to find suitably adapted properties in many areas.

Another possibility is to purchase a property that has been adapted. However, due to the high financial cost of such a purchase it is often not a viable option

Sheltered accommodation is used to describe housing that has been specifically designed for a person to live independently but with additional facilities to help them with day-to-day living. Facilities in sheltered accommodation can include laundry rooms, a communal lounge, access to a warden or an emergency alarm system.

It is common for people to mistake sheltered accommodation as being for older people only. In truth many young adults, as well as older adults, can benefit and live in sheltered accommodation.

Supported housing encourages a person to live more independently, ensuring that the individual stays a part of their local community whilst still receiving a limited level of support in their home each week.

Supported housing is usually managed by either a local authority, housing association, voluntary organisation or charity. Many people living in supported housing choose to attend education, go to work or visit a day centre during the day.

As with sheltered accommodation, there will often be communal facilities available as part of supported housing. It is common for everyone living in one area of supported housing to share similar disabilities or challenges

Shared lives schemes help adults with disabilities or other challenges who would find it hard to live independently. The scheme matches a person who needs extra support with an approved carer, who then offers care and support as part of the person’s daily life.

Shared lives schemes often require that the carer moves into the home of the person that they are supporting and becoming a part of family life. Although this can be a very positive and useful option, it does require deep consideration.

Shared lives schemes are available on a short-term basis, as well as long-term. This can be useful for respite care and support.

Homeshare involves a person with additional needs living under the same roof as someone who can offer them support. In exchange for being offered a spare room, a helper can offer a minimum of 10 hours a week to help with household chores and administrative issues such as cleaning, cooking or laundry.

A homeshare helper is typically a young person who is either working part-time or studying – they are not trained support workers and can assist with household tasks only

A residential home or care home can be the best option for someone if other living arrangements are unsuitable or if the person’s needs are complex and hard to offer in other settings.

Residential homes provide accommodation and personal care, such as washing and dressing. Care homes provide similar things to a residential home along with at least one or more qualified nurses on duty at all times, to provide nursing care for complex health issues.

As with sheltered accommodation, it is incorrect to believe that residential homes and care homes are for older people only. Some residential homes and care homes are focused on offering care for younger people, with a range of activities and facilities on-site.

Both residential homes and care homes are regulated by the Care Quality Commission.

Moving to a residential home or care home is never an easy decision, as it can lead to significant change for everyone involved, whilst also being potentially expensive. However, both these housing options can be the best option for all concerned.

If you would like to discuss housing issues with the TSA, no matter how large or small, our support services are here for you. Click here to find out how to get in touch.

Make a one off or regular  donation

£10 Means that we can send a support pack to a family who has just received a life-changing TSC diagnosis, ensuring that they do not go through this time alone.

£25 Can help us develop materials that are included in our support services, flagship events or campaigns.

£50 Can provide laboratory equipment for a day’s research into the causes, symptoms, management or treatment of TSC.

To provide help for today and a cure for tomorrow.