There are several support options for people with Down’s syndrome who live independently, including:
- support workers employed by a support provider
- personal assistants hired directly by the person getting support
- support tenants who live with the person and provide daily living assistance as part of an agreement
- circles of support made up of family, friends and individuals interested in the person’s welfare, providing an informal support network and speaking up on the person’s behalf
Here are some more details about available support options:
Many people with Down’s syndrome living in their own homes receive support from support workers in the home. Support workers are paid professionals who help with any aspect of daily living, including personal care, cooking, cleaning, getting out and about and managing money.
Support can be provided from a few hours a day up to 24 hours for individuals with
the highest levels of need. Support workers are generally provided by private companies and funded via the local authority.
A personal assistant performs similar tasks to a support worker, but is directly employed by the person he or she supports. Your local authority can provide you with direct payments to fund a personal assistant. You can find more details about direct payments and how to access them in our information about paying for support.
There are several ways you can recruit and hire a personal assistant: advertise online, use a personal assistant register or contact a support organisation directly. Before you write your job advert, think about the skills and personal qualities you require. You may like to look at some example personal assistant job adverts for ideas. Skills for Care has further tools for recruiting personal assistants.
Just like any other job, you will need to interview the candidates and decide who is most suitable. Try to include your relative as much as possible in this process. Your relative will be spending a lot of time with this person, so they both need to get on well. Finding the right candidate may take time, but it is worth persevering to get the right person for the job.
There are a number of benefits to employing a personal assistant. You and your relative can have more control and flexibility over support received and you can choose who
to hire. However, you also have an employer’s responsibilities and legal obligations. For example, you are responsible for paying their wages, including tax, holidays and national insurance contributions. You do not have to manage these responsibilities alone. See our information about paying for support for details about managing personal assistants.
Some personal assistants say they are self-employed, but it is important to check their official employment status. Contact HMRC’s employer helpline for more information.
A circle of support is a group of people who know your relative well, such as family, friends and supporters. They meet regularly to help your relative achieve what they want out of life. This can include sharing ideas to tackle problems, providing a strong network of relationships, helping your relative feel more independent and taking action to get things done.
Circles of support can add an extra layer of support in addition to paid professionals. There is no formal process to setting one up and you can organise it yourself.
Support tenants are a less common type of support, but are still a possibility. A support tenant will live with a person with a learning disability and provide some support, such as help with household tasks and budgeting. Support tenants have an agreement that specifies particular duties. This can include being present at certain times of day, offering assistance with daily living tasks such as preparing meals and notifying the support provider when they will be away. In exchange for support duties, support tenants may not have to pay rent and may receive reasonable expenses for their support duties.
Support tenants are not technically tenants; they have a license to occupy, but do not have the same rights as the tenant with a learning disability. This is because it would not be appropriate for a support tenant to have the right to remain in case the arrangement does not work out.
Community support networks are networks of small numbers of people with learning disabilities living close by. One of the properties in the network is occupied by a volunteer who provides some practical support to each person in that network. The volunteer also supports people in the network to maintain friendships and spend time with each other.
Community support networks are a relatively low support option and people who are part of these networks tend to receive additional help from support workers. Benefits can include helping your relative feel part of a community, promoting independence and providing social opportunities. However, these schemes are not available nationwide and require suitable properties to be available in close proximity to each other. KeyRing is a leading charitable provider of community support networks.