Living with HD means that your condition will change through the course of time, and your home as it is may not always be suited to your needs.
Consequently, you may wish to consider planning for what your future needs might be and may wish to consider the suitability of your home.
This may involve making changes within your home. Remember small and simple changes can sometimes make a big difference, whether that is getting a handrail fixed to your stairs, a grab rail in your bathroom or being provided with a small trolley to help you take a cup of tea from the kitchen to your living room.
The first step in this process is to ask your family doctor to refer you to a community occupational therapist who will assess which aids or small adaptations would help make your home safer and more accessible.
Similarly you may need to adapt rooms so that they are suitable for you to fully use. This could include your bathroom/ toilet.
In some circumstances you may consider moving home, for example if it is not possible to make adaptations to your home or if it becomes difficult for you to get in and out of your home. It might be that you live in an upstairs flat which becomes difficult to access if your mobility deteriorates.
Help is available from your local council, who will make an assessment of your circumstances and what might be the best way of helping you. Help is available for both tenants and homeowners. For major home adaptations or extensions which have been assessed to be necessary grants between 80%- 100% are available.
Further Help and advice can be sought from:
Scottish Huntington’s Association
Huntington’s Disease Specialists will work alongside your local council staff who make this assessment.
Financial Wellbeing Officers
Citizen’s Advice Bureau
Your Local Authority
Social Work, Rehabilitation Team and local Welfare Rights Officers to access assessment and grants to assist in making adaptations
Your local housing office can give you a list of housing associations in the areas in which you would consider living or you can access this information from The Scottish Federation of Housing Associations www.sfha.co.uk/
Department of Work and Pensions
Benefits advice and applications direct.gov.uk
The following organisations can also provide useful information and guidance
A major charity focusing on needs and rights of disabled people. Their advice service provides free and confidential advice on a wide range of issues affecting disabled people and can be accessed by phoning Tel: 0131 313 5510 or Textphone: 0131 346 2529. In relation to housing and adaptations the following are the links to their factsheets
Care and Repair: Branches throughout Scotland
Primarily support older owner occupiers with some offices extending this support to include owners of all age groups with physical and mental disabilities, private rental sector and crofting tenants (Highlands & Islands)
Housing Options Scotland
Help disabled people, veterans & older people to find the right house, in the right place
Provide a range of comprehensive factsheets regarding help and funding for home adaptations.
The Housing and Homelessness Charity
Helps people in financial need gain access to welfare benefits, charitable grants and other financial help either online, by phone and face to face through their partner organisation