equipment & adaptations
If your child has physical disabilities which make it hard to manage everyday things such as meal times or getting around, you may be able to get special equipment or adaptations in your home to make life easier.
Things like special toilet seats, bath aids, ramps, hoists and slings can be loaned to you by your local social care and health service, after an assessment of your child’s needs.
In Brighton & Hove, the Royal Alexandra Children’s Hospital and the Children’s Disability Service at Seaside View currently share a store of specialist equipment. Occupational therapists and physiotherapists from the Children’s Disability Service will assess each child individually for the suitability of such equipment, which may then be available on short term loan. Speak to your health visitor, therapist or social worker about getting an assessment by the occupational therapy team at Seaside View.
In East Sussex, the Children’s Integrated Equipment Service (CIES) provides equipment on loan to disabled children and young people in East Sussex from birth to school-leaving age (16 or 19). You can contact Children’s Integrated Equipment Service directly via their website but you will be referred to the Children’s Integrated Therapy Service (CITS) for an assessment of your needs.
For very 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 national organisations who will try to make equipment to suit your child’s individual needs, which you may not be able to get anywhere else.
If your child needs specialist equipment at school, you should discuss the situation with your child’s school.
Trying out equipment
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 and try things out.
Some of us have found it helpful to visit independent living exhibitions or centres. The Red Cross run short term mobility equipment loan services in Hove and Bexhill-on-Sea. The Disabled Living Foundation in London is also a good place to visit if you can get there or perhaps one of their Equipment Demonstration Centres is closer to home. They have a telephone helpline and their Living Made Easy website has a huge database of equipment and details of where the Equipment Demonstration Centres are.
There are large-scale annual exhibitions of disability equipment and useful gadgets such as Naidex. Dates and venues for these are advertised in print magazines such as Able or online. There are also adverts in disability magazines and local newsletters for second-hand equipment, or you can try the Disability Equipment Service as well.
For buggies and wheelchairs, Brighton & Hove families will go to the Wheelchair and Seating Service at 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.
In East Sussex, wheelchairs and buggies are provided by the East Sussex Wheelchair Service by Ross Care which can assess and equip you directly. You can contact them for information, but you will need to be referred by a healthcare professional such as a GP, therapist, or nurse.
Be aware that there may not be a huge range of wheelchairs immediately available for children. However, a Personal Wheelchair Budgets (PWB) is available to support a wider choice of equipment. The PWB can be used to add additional features to the wheelchair, opt for an alternative wheelchair within the available equipment list, or to support purchasing a third-party wheelchair. You can also contact Community Health and Engagement Officer (CHEO) at East Sussex Wheelchair Service to get more information about available funding sources.
Whizz-Kidz is a charity which provides mobility equipment for children (wheelchairs, trikes, buggies). They may be able to help if the equipment you feel your child needs is not provided by the Sussex Rehabilitation Centre or Millbrook Healthcare or wish to have additional features such as a rain cover fixed to the wheelchair. And if your child needs help and support with using their wheelchair, Go Kids Go run wheelchair skills workshops.
Or you can visit the NHS website for information on wheelchairs and scooters.
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.
In order to get a home adaptation you will need to be assessed by occupational therapists that are part of your local social care team.
In Brighton and Hove, these occupational therapists work within the Children’s Disability Service at Seaside View Child Development Centre.
In East Sussex, assessments for housing adaptations are carried out by the Children’s Integrated Therapy Service (CITS).
An occupational therapist (OT) will 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.
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. In exceptional circumstances the local authority may also be able to assist with costs if they are above £30,000, or they will work with other council departments or agencies to look at re-housing.
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 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.
Sussex Homemove operates in both Brighton & Hove and East Sussex and they can give you information about getting onto the council or housing association waiting lists or about swapping homes.