There are all sorts of specialist equipment and adaptations to your home that may help make daily life a bit easier for families with a child with more severe physical disabilities.
Perhaps they have trouble managing at meal times, or with going to the toilet or getting around. This section tells you about where to go for specialist equipment and how to get adaptations to your home. For more information, download our factsheet on Home adaptations and equipment [pdf 700kb]
Daily Living Equipment
You may be able to get some things to help with looking after your child at home through a loan scheme run by social care and the health service. Non-slip mats, toilet seats, bath aids, ramps and other equipment might be available if you ask your health visitor, social worker, occupational therapist or the Children’s Disability team.
There are constant changes and developments in the kind of equipment and gadgets that are available, and it’s sometimes useful to be able to see what’s on offer. Some of us have found it helpful to visit independent living exhibitions or centres. The Red Cross run a short term mobility equipment loan service in Hove, and the Community Back Care Service offers back care advice and training to carers.
The Disabled Living Foundation in London is also a good place to visit if you can get there. They have a telephone helpline and their website Living Made Easy has a huge database of equipment.
The biggest annual exhibitions of equipment and useful gadgets are Naidex and the Mobility Roadshow (which also has dozens of exhibitors of products not just to do with cars/vehicles and wheelchairs). The dates and venues for these are advertised in papers like Disability Now (DN) or on our website. There are also adverts in DN and local newsletters for second-hand equipment, or you can try the Disability Equipment Service as well.
The Royal Alexandra Children’s Hospital and Seaside View currently share a store of equipment designed to make everyday tasks easier for you and your child. Occupational therapists and physiotherapists will assess each child individually for the suitability of such equipment, which may then be available on short term loan.
For specialised equipment, Chailey Heritage has a rehabilitation engineering unit, which will custom-make or specially adapt existing aids to suit your requirements. REMAP and MERU are other organisations who will try to make equipment to suit your child’s individual needs, which you may not be able to get anywhere else.
For buggies or wheelchairs, you will have to go to the Sussex Rehabilitation Centre at Brighton General Hospital. Referral is usually by an occupational therapist or a physiotherapist and you should get an appointment fairly quickly. However the choice of wheelchairs for children is very limited. A wheelchair voucher scheme enables people to have a ‘voucher’ equal to the cost of an NHS wheelchair, leaving them free to pay the additional cost to an agreed supplier for a more expensive chair.
Whizz-Kidz is a charity which provides mobility equipment for children such as wheelchairs, trikes or buggies. They may be able to help if the equipment you feel your child needs is not available from the Sussex Rehabilitation Centre, for example if you’d like your child to have a better wheelchair than can be provided on the NHS. Visit Whizz-Kidz website.
If your child needs specialist equipment at school, you should discuss the situation with your child’s school. Hillside outreach and inclusion service can provide additional advice and support to mainstream schools in relation to children with physical and/or medical needs.
Adaptations to your home
Getting major adaptations to your home can be a very slow process. Just getting a ramp or stair lift in your home can take a year or more, and alterations like an extension will take at least 12 to 18 months.
Start by contacting your social worker if you have one, or call Seaside View on 01273 265825. They will arrange for an occupational therapist (OT) to visit you at home to discuss what you need and assess to see if you are eligible for support. Recent changes in the rules for grants mean that if there are long waiting lists to see an OT, Children’s Services can ask someone else (eg your GP) to carry out the assessment. The council produce a number of leaflets that offer advice about the adaptations process:
There are various ways of paying for these works. Council tenants are usually funded from budgets held by council departments. Owner-occupiers and people in rented accommodation can be assisted to apply for money the council call Disabled Facilities Grants. The maximum amount for this grant is £30,000. For adults this grant is means tested but this is not the case if the work is for a child under 19. Sullivan’s Heroes is a charity that provides financial assistance with raising funds for home adaptations to families in Sussex and Surrey. Visit www.sullivansheroes.org for more information.
The OT will continue to supervise any work you are having done. Only works recommended by the therapist will be paid for and these have to be considered essential and not just desirable. However, the Disabled Facilities Grant now has an element concerning making the home ‘safe’ – this was added specifically with the needs of children with challenging behaviour in mind.
It may be that your present home isn’t suitable and can’t be adapted to meet your child’s future needs. If you are a council or housing association tenant you should speak to your housing officer about transferring to a more suitable home. Although it’s often a long wait, sometimes, if you need specially adapted ,you will have a better chance of being able to move, or your name can be put forward to another housing association that has appropriate flats and houses.
If you rent your home from a private landlord it can be even more difficult to make it suitable for your child’s changing needs. The council’s Housing Options Service in Bartholomew Square in Brighton can give you information about getting onto the council or housing association waiting lists.
The Housing Options Service may also know about any local estate agents who keep information about adapted and accessible properties for sale in the area. Although it’s a national publication it’s also worth looking in Disability Now as many people advertise there when they are selling property suitable for households with a disabled person (or you could place a ‘wanted’ advert). There’s also a property website dealing exclusively with accessible homes for sale and rent – ‘The Accessible Property Register’.