Special equipment can take many forms ranging from simple drinking cups to electronic communication aids and home extensions. Which items might help your child will depend on his particular problems.
It's very important to ask for advice before you get a specialised piece of equipment. Not only might the wrong item turn into a costly white elephant gathering dust in the corner, but it may actually impede your child's progress. The wrong gadget may give your child success at a task but stop him trying to do it properly. As a result, he may fail to develop new skills or lose old ones faster than his progressive disease dictates.
One of the best people to ask for advice is an occupational therapist. She is trained to assess your child's abilities and needs and will know many possible solutions to the problems he and your family face. She will also have practical experience of many of the items under consideration and so be aware of additional snags or advantages which are not stated in the manufacturer's literature.
You may also pick up ideas on equipment from your physio, health visitor or home teacher as well as from parents whose children have similar problems. If your child goes to school, the staff may offer suggestions or let him use equipment in the classroom which would be equally useful at home. But before you follow anyone's advice, think carefully about your own situation. You don't want a hoist in the bathroom which blocks the way to the toilet.
Toy libraries provide an opportunity to try out a wide variety of toys and to borrow them for use at home. This is ideal as you then only buy toys you know are suitable. Some toy libraries stock play equipment specially designed or adapted for disabled children and there are a few manufacturers who specialise in this type of toy. But you don't always need to buy. Sometimes existing toys can be adapted or new ones built from scratch by someone with a few tools and a bit of time. The National Association of Toy and Leisure Libraries produce several publications to help you choose or adapt toys for your child.
Even the most ideal equipment will be no good if your child refuses to use it. You'll need to be particularly sensitive to his feelings if the new equipment is necessary because his condition has deteriorated. For example, if he is gradually losing the ability to walk, he may be very resistant to accepting a wheelchair.
Try to involve him in the process of selection as much as possible so he doesn't feel the equipment is being foisted onto him. Hopefully any resistance he has will lessen once he realises the equipment can make life better.
Special equipment is expensive as none of it sells in large enough quantities to benefit from the economy of mass production. In fact, some of the items you need may have to be individually made for your child.
The Health Service provides some equipment, like wheelchairs, which are needed for medical reasons. These items are provided free for children but the choice of design may be limited, especially if you want a powered chair. Your local authority has a statutory obligation to supply aids to daily living such as gadgets to help with bathing and toileting. Requests for these are made through an occupational therapist although your social worker, health visitor or community nurse may contact her for you.
Unfortunately, no amount of statutory obligation can enable your social services department to provide equipment if they have no money to pay for it. Economic restrictions on local government or a heavy demand for social services may result in severe limitations on your council's budget that affect the amount of help they can give. You may be told that you will have to wait for the equipment you need until funds become available, perhaps until the new financial year, so try to plan ahead with your requests if you can. Sometimes making a fuss will push your equipment up the priority list (see chapter 10).
Some equipment falls through the holes in the welfare net so no one is obliged to provide it. Physio equipment like standing frames, rolls and wedges fall into this category. Your OT, physio, social worker or health visitor can often arrange for you to get items that cannot be officially funded, perhaps by contacting charities on your behalf or arranging for you to borrow the equipment from somewhere. Your voluntary society may also be able to help.
Arranging finance takes time and so does delivery, especially when equipment needs to be specially made or adapted. It is therefore important to think ahead. Don't wait until your child is too heavy to lift before you ask for a hoist or you may end up struggling for ages.
Although your request for equipment may have been channelled through your OT, don't automatically assume that slow delivery is her fault. If you are angry about it, ask her the cause of the delay so your complaint can be directed at the right people.
It's worth thinking whether well planned alterations to your home could make life easier for you all. For example, if your child can't walk, a downstairs bathroom or stairlift could save much lifting and wider doorways could make the whole house more accessible to his wheelchair. Even relatively small changes like making the bathroom door open outwards rather than inwards can make a big improvement to the available space.
Your social services OT can recommend you for a grant from your local authority to cover part of the cost of alterations and social services may also contribute. You may be expected to provide the rest yourself, perhaps by extending your mortgage, but you may receive extra help if your income is very low. If you are in privately rented accommodation, your landlord can apply for the grants to do the alterations you need although you may need to work quite hard to persuade him to do them in the first place. If you or your landlord receive a grant, part of it may have to be repaid if the house is sold within a stipulated number of years.
If you are in council housing, the council carry out the alterations themselves using the ordinary housing budget as they are not eligible for grants. In theory, this shouldn't make any difference as the money will come out of the public purse anyway but life is not that simple. If the council supplying social services is not the same one providing your housing, you may find your alterations delayed while the two councils argue about which of them should pay. If all else fails, make a fuss (see chapter 10).
Plan well ahead about alterations to your home because bureaucracy and builders are both very slow. It's also important to plan for any different needs your child may develop in future years as it is difficult to obtain a second grant for further alterations. Grants can't be paid retrospectively so don't hire an architect or start any building work until you are sure the finance is arranged.
If you know a piece of equipment or toy would suit your child but it needs to be specially made or adapted, there may be someone locally who would do the work for you. Schools, colleges and industrial training schemes are often looking for interesting projects for students to tackle and may agree to make or adapt equipment for a local child. The professionals you are working with will often contact them for you. You and your child will probably need to have some contact with the students, both to make the project more meaningful for them and to ensure that what they make is suitable.