Adaptions for your Home

This information is intended to assist leukodystrophy patients and their families in the management of their condition. All information and links are based around UK services – our Support Service Team are happy to help with individual enquiries Contact both from the UK and abroad.

Occupational therapists can also provide support with many of these items, helping you to manage daily life at home, school and work.

The  Newlife charity can help to get the equipment you need, equipment that has often been refused or delayed by statutory services meaning that babies and children may suffer unnecessarily. Newlife runs the only fast track equipment services in the UK helping babies and children in urgent need.

Making adaptations to your home can make caring for a person with a disability a little easier. Things many people take for granted, like being able to get upstairs or go into the garden, can be very difficult and so it becomes necessary to carry out adaptations to your home. This can be a very stressful and emotional time so we have compiled some helpful advice on who you can contact for help, grants which may be available and things to keep in mind when planning the adaptations.

A Disabled Facilities Grant, often referred to as a DFG, may be available for some home adaptations including major adaptations. This can include extensions and structural work to accommodate fixed hoists, stairlifts, downstairs bathrooms, shower units etc. If this type of adaptation is needed, a local occupational therapist (OT) will come to assess your needs and then contact the relevant council departments. Applications for grants should be made via the OT to local councils.

A means test for adults (including household income and household savings over £6,000) is used to decide how much financial assistance can be provided. Depending on the outcome of the test, the amount of assistance offered can vary from 0-100% of the cost.

Disabled children under 19 can get a grant without their parents’ income being taken into account. You must own the property or be a tenant (or be a landlord and have a disabled tenant) and you must intend to live in the property during the grant period (currently 5 years). Please note that you may not receive any grant if you start work on your property before the council approves your application.

Examples of the types of adaptations a DFG can be used to provide:

• widen doors and install ramps
• improve access to rooms and facilities – e.g. stairlifts or a downstairs bathroom/bedroom
• moving and handling equipment
• provide a heating system suitable for your needs
• adapt heating or lighting controls to make them easier to use

DFGs operate across England, Wales and Northern Ireland. Conditions for DFGs will vary according to the country in which you live.

Click here for more information on Disabled Facilities Grants.

For details of schemes in Scotland see Disability Information Scotland.

Information and advice on design issues is available from the Centre for Accessible. The organisation is a leading authority on inclusive design, and they provide consultancy, training, research and publications on building design and management to meet all user needs. This organisation keeps a database of architects, surveyors and similar professionals with experience of designing for disabled people and has a number of useful publications and design sheets.

Beds

Electric profiling beds offer various benefits for those with long-term health and mobility issues, as well as benefits for those that care for them.

An electric profiling bed is a specially designed electric bed that can be adjusted to help to help the person to be positioned comfortably. The mattress platform of an electric profiling bed is divided into sections to allow areas of the bed to be positioned at different heights and angles to suit the person’s needs.

Most electric profiling beds are height adjustable, which makes transferring from bed to chair for example much easier, it is also a really important function for those who care for a disabled person as it can be put at the correct working height which helps to prevent back injuries. and are available in a variety of specifications.

You should always seek professional advice before buying a bed as it is important to consider the specific needs of the individual to ensure that the appropriate profiling bed is chosen. Your Occupational Therapist (Condition Management, with symptoms, Services, Occupational Therapist) will be able to help you with an assessment.

Pressure relieving mattresses

Prevention of pressure sores is an important part of caring for those with complex disabilities and reduced mobility. There are several different types of pressure relieving mattresses made from different materials. Dependent on individual need they may include foam, memory foam, gel, water, or use low air loss and alternating air systems.

Static air mattresses

Air is channelled within the cells of these static mattresses. The air-filled cells increase the surface area over which the pressure is distributed and help the air to circulate and to disperse heat and moisture.

Alternating air mattresses

These mattresses are made of air cells which inflate and deflate alternately or sequentially. This ensures that pressure on any given point is continually changing.

The sequence of inflation and deflation is controlled by a pump which is usually mains powered. The interval of inflation and deflation can also be controlled on some models.

Bed & Chair Tables

Over bed and over chair tables facilitate leisure, work, eating and drinking activities for those with conditions confining them to bed or a wheelchair. They come with a number of weight and style options, mostly with wheels or castors.

Hoists provide a way to transfer somebody with limited mobility without putting unnecessary strain on the carer or the person being moved.

There are three types of hoist:

• Ceiling hoists
• Portable overhead (gantry) hoists
• Mobile hoists

You should always contact your local social services and seek advice from a professional such as an Occupational Therapist (OT) (Condition Management, with symptoms, Services, Occupational Therapist) to undertake a full assessment. The OT will provide and maintain the appropriate equipment, as well as providing carers with all the training requirements.

Ceiling track hoists

Ceiling hoists run along permanently fixed tracks, so they offer less flexibility in use than a mobile system. On the other hand, they do not occupy floor space as a mobile hoist does, and they may be operated by the user independently – which is not possible with any floor standing system.

They are generally easier for carers to operate than a mobile hoist but may not always be suitable to be installed into your home as ceiling joists may need to be reinforced, and doorways altered, to accommodate the track.

Ceiling track systems are powered by mains electricity for the transfer, with either a manual or powered raising and lowering mechanism. There will either be a battery back-up for emergencies, most systems are powered by rechargeable batteries with a charging/docking point at the end of the track.

Portable overhead hoists (Gantry hoists)

A more portable/temporary alternative to a ceiling track hoist is also available, in the form of a portable hoist and gantry arrangement.

This is particularly suitable for situations where a hoist is required but you are awaiting adaptations to your home.

Mobile hoists

Mobile hoists don’t require any track installation, so offer more flexibility of use. They do, however, demand more of the carer, and can be more difficult to operate.

In selecting a mobile hoist, thought needs to be given to the environment where it will be used: whether there is enough room to manoeuvre it into the right position; if the legs of the hoist will fit under or around any furniture, such as bed, bath or chair; whether the floor surface is smooth enough to allow it to operate easily: thick carpet or threshold strips are difficult to move over.

It is also important to check that they have sufficient operating range to lift the person clear of any surface, and perhaps also to pick them up from floor level in an emergency.

They also need to be stored when not in use, preferably in an area where they are out of the way, and with a charging point for their battery.

When designing an accessible bathroom for a someone with a disability, it is of utmost importance to get an individual assessment with an occupational therapist as you may be eligible to receive a Disabled Facilities Grant (DFG) to help towards the cost of the adaptation.

Information and advice on design issues is available from the Centre for Accessible. The organisation is a leading authority on inclusive design, and they provide consultancy, training, research and publications on building design and management to meet all user needs. This organisation keeps a database of architects, surveyors and similar professionals with experience of designing for disabled people and has a number of useful publications and design sheets.

Things to think about:

• the needs and preferences of the person;
• If the adaptation is for a child think about their age and size and how the facilities will meet their needs or can be easily adapted further to reflect their changing needs as they grow and their emerging independence and need for privacy;
• other bathroom users;
• access and space;
• structural alterations, and whether a grant is available to help cover costs;
• type of bathroom e.g. bath or shower/wet room

Equipment you may need:

• changing table for personal care;
• hoisting equipment;
• useful equipment;
• bath seats and stools;
• wall mounted shower seats/shower stools;
• toilet frames;
• raised toilet seats;
• bathroom grab rails.

Washing gadgets:

• long handled scissors;
• table top nail clippers;
• long handled hair brush/comb;
• a Shower Sandal is a useful aid for people that find it hard to bend down and reach their lower limbs. It can be used to wash and clean the feet without bending over. The suction cups enable it to be secured to the bath floor. When the user applies some liquid soap to the bristles, and then moves their foot back and forth, the foot is cleaned.

There is a good range of equipment available to help with everyday tasks in the kitchen and around the home. This may include small items to help with tasks such as opening tins and jars, cleaning or cooking, as well as larger items such as kitchen furniture and fittings.

Utensils

Adapted utensils, carving knives, gripping aids, scissors, forks and spatulas for the disabled or elderly. These are designed with either special grips or blades for people with weak grip or limited range of motion.

Adapted Cutlery

Adapted cutlery designed especially for people with a weak grip or a limited range of motion. The cutlery for disabled has specialized handles which are lightweight, easy to use, and ergonomically designed. This kind of cutlery provides a sense of independence to the people who have muscle/limb issues or poor grip.

Utensil Holders

Clips, bands, and holders are available, these can be helpful for those with weak grip or fingers or who have a limited range of motion.

Openers

Adapted tin can openers, jar openers and bottle openers. These items are useful for people with weak grip or limited range of motion.

Non-Slip Products

Non-slip matting and non-slip netting products help keep items stable. Non-slip mats and other materials can also be useful in the, kitchen, bathroom and in a wide variety of situations around the home.

Kettle Tippers & Teapots

Devices to help safely pour water from kettles. Kettle tippers are made of wire or plastic and help the user fill or pour from the kettle with minimum strain.

Perching Stools

Perching stools enable the user to ‘semi-sit’, reducing the strain from either standing for long periods or from getting up and down from full seating positions. A perching stool is typically used at kitchen worktops or in the bathroom.

Cups & Mugs

Two handled, non- spill and wide mouth cups and mugs for people with a range of physical disabilities or dexterity limitations. Some products are designed for people with temperature sensitivities or have a non-spill function for those with an unstable grip.

Plates & Bowls

Scoop plates, non- slip and non- spill plates and bowls that help those with a variety of physical disabilities. These include people with a weak grip or the use of a single hand. Plate guards and surrounds, deep side dishes and bowls can help to maintain a certain amount of independence.