Equipment and adaptations
Resources
If your child has severe physical difficulties, which make it hard to manage everyday things such as meal times, toileting or getting around, you may be able to get special equipment or adaptations in your home to make life easier. You can find out more by downloading our factsheet 'Adaptations and large equipment'.
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 Daily Living Centre in Hove gives carers and young people an opportunity to test out different equipment. The centre doesn't sell the equipment but they will tell you the cost and suppliers details. The Community Back Care Service also runs from this centre, offering back care advice and training to carers. The Red Cross run a medical equipment loan service in Hove. The Disabled Living Foundation in London is also a good place to visit if you can get there, and they have a telephone helpline.
The Centre for Accessible Environments is also based in London, is also based in London. They provide information by telephone, letter, email and face to face and provide a consultancy service.
The biggest annual exhibitions of equipment and useful gadgets, are Naidex, Independent Living 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). There are also adverts in DN and local newsletters for second-hand equipment, or you can try the Disability Equipment Register as well.
Specialist equipment
The Royal Alexandra Hospital and the Seaside View Child Development Centre 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 which 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.
If your child needs specialist equipment at school, you should discuss the situation with your child's school. The Outreach and Inclusion Service at Hillside School can provide additional advice and support to mainstream schools in relation to children with physical and/or medical needs.
WhizzKidz is a charity which can often help with financial costs where, for example, you'd like your child to have a better wheelchair than can be provided on the NHS. Whizzkids can make up the difference in cost if you can't afford it yourself.
A wheelchair voucher scheme exists that gives wheelchair users more choice. It enables people to have a 'voucher' equal to the cost of the NHS wheelchair, leaving them free to pay the additional cost to an agreed supplier for the more expensive chair that they want. Contact the Sussex Rehabilitation Centre at Brighton General Hospital for more details. Their telephone number is 01273 242156 or 242157.
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.
You need to start by contacting your social worker, if you have one, or the Duty and Family Support team for your area. 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, the CYPT can ask someone else (eg your GP) to carry out the assessment.
There are various ways of paying for these works. Council tenants are usually funded from budgets held at their local housing office. Owner-occupiers and people in rented accommodation can be assisted to apply for money the council call Disabled Facilities Grants. The first £30,000 of this award is not 'means tested' but your income would be taken into account for any amount over this. The CYPT may also be able to assist with costs if you are asked to pay towards the work, but how much they can pay will also be based on your own income. 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.
Moving home
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 accommodation 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 are keeping information about adapted properties for sale in the area. In the past there have been attempts among local estate agents to swap details about accessible homes that come on the market. 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). If you're on the internet there's also a property website dealing exclusively with accessible homes for sale and rent – 'The Accessible Property Register'.