Adapting your Home
Depending on the type of rare disease, it may be necessary to adapt your home. For some people these are quite small adaptations involving handrails or a small ramp (minor adaptations), but for others it can involve a more substantial change to your property (major adaptations). It may be possible to obtain help towards the costs of the adaptation.
Minor Adaptations (<£1000)
Your Local Authority may choose to pay for minor adaptations. Small grant awarding bodies may also assist with these costs.
Disabled Facilities Grant (DFG)
The Disabled Facilities Grant (DFG) is a mandatory council grant that helps to meet the costs of major adaptions to a disabled person’s home so that they can continue to live there. Although savings, income and outgoings are taken into consideration for adults, means testing does not apply to parents of dependent disabled children or young people aged under 19. The maximum DFG award is currently £36,000.
If additional work is required which takes the cost above the DFG award ceiling, you can opt to pay this extra yourself. The council has the discretion to provide top-up assistance, sometimes in the form of a loan.
To access the DFG, an occupational therapist (OT) from the social services department at your local council will usually need to assess your child’s needs. If they think the adaptations are “necessary and appropriate”, they usually then put their recommendations to the team administering the DFG who will take you through the process. Your council has to decide whether it is “reasonable and practicable” to do the works involved.
Examples of the sorts of adaptations the DFG covers include:
widening doors and installing ramps or stairlifts
kitchen and bathroom adaptations for eg. walk in showers
extensions (possibly for a downstairs bathroom and/or bedroom)
If you are a private tenant, you will need permission from your landlord to carry out any adaptations in your home. You might want to get an assessment from your local authority first to find out what you need before approaching your landlord. Tenants and landlords who have a disabled tenant can also apply for a DFG. While your landlord cannot refuse permission unreasonably, they can refuse on the grounds of things like the length of your tenancy, how much work is needed, if they need planning permission or freeholder consent and if the adaptations would damage the building or devalue it in some way.
If you are a Housing Association tenant, you should check whether it operates its own scheme for adapting its properties.
More information is available here: https://www.gov.uk/disabled-facilities-grants
Sometimes we need more help than we can give ourselves
If you think you require adaptations, are RAREnavigators can help you to talk to the professionals involved.