Getting the right equipment and housing adaptations to meet your child's everyday needs is critical. But it can also be very tough: these processes are time consuming and often frustrating. Don't wait until your situation is so risky that you are at breaking point before you ask for help. If you go down, everyone suffers!
Community Equipment Services (CES)
- There's more to equipment than nappies and wheelchairs! CES can provide essential equipment to meet a wide range of needs, including help with any of the following; lifting, seating, managing stairs, safety, communication, washing and bathing, toileting, independence around the home and playing. Getting equipment that's appropriate and comfortable for your child often takes a long time, so it may be helpful to decide on the most urgent priorities and tackle those first.
- Getting help generally requires the recommendation of an occupational therapist (OT). Ask social services for an OT assessment under the NHS & Community Care Act.
- A lot hangs on the assessment; see Factsheet 3 about conversations and meetings. Be clear about what you, your child and the rest of the family need and why. Use other reports and advice to back up what you are saying. You need to demonstrate that any adaptations are 'necessary and appropriate'. So while it may be OK for a 3 year old to crawl on the floor, it's not for a 10 year old who feels embarrassed but hasn't space to use his wheelchair.
- It must include the needs of siblings. It's not OK for a child to have to share a bedroom with a sibling who smears, destroys the other's belongings or won't let them sleep, but you will need to make the case.
- It's hard to say you aren't coping and easy for children to be worried about this and feel a burden. But you will have to explain how what you are doing right now is taking it's toll. You may want to save any conversation about how exhausted and miserable you feel until your child is elsewhere.
- If equipment is recommended, visit a Disabled Living Centre and try out the options. You and your child may have different preferences. Listen on all channels to what your child is telling or showing you. A hoist isn't the answer if your child's terrified or experiences pain being lifted this way. Contact the Disabled Living Centres Council on 0161 834 1044.
- Trial large expensive items; you need to see how they would work in your own home. Whatever you choose, be prepared for compromise. Using equipment and keeping safe can mean working at a slower pace and taking more time. Don't be rushed or rush your child into making a decision
Housing
- If your home is a difficult place for your child to live in, your Local Authority (LA) has a responsibility to look at how to make it safer and more accessible.
- Sometimes it just isn't reasonable, or practical to adapt a property. If this is the case it's worth moving to a place with more potential to get right before you ask for help. If you rent from a LA you may be re-housed.
- If you are a council tenant, 'get your house in order'. High rent arrears, or uncertainty about your tenancy, like the imminent sale or transfer of your home, are reasons for not approving work an OT has recommended.
- The LA organise approved contractors to carry out the adaptations on council housing. If you need to move out while work is done, tell them as soon as you can. If you say nothing, everyone will probably assume you have family or friends nearby who are happy to put you up!
- If you are a private occupier, your LA funds work through a Disabled Facilities Grant (DFG). They have 6 months to make a decision but this only begins once a formal application for a DFG has been made. You don't need to wait for an OT assessment. They can't refuse to allow you to make an application or to give you an application form. Remember that DFGs aren't available for work that's already started. And that LAs can give help in addition to the DFG if they think it's necessary. Be assertive!
- You may be asked to contribute; this will depend on your circumstances. Think carefully about that new job with the big salary! It makes sense to do what you can to minimize your income just before you apply for a DFG.
- Your LA will assess the feasibility of the required adaptation and help you decide how best to achieve it. You may need to negotiate hard over the specification of the work; after all, the whole family has to live with the adaptations and you want to be sure that major works will continue to meet your child's needs in the future. These discussions may feel intrusive, especially if you are contributing a significant sum towards the cost.
- Make sure funding is allocated within your DFG to organise and manage the project, otherwise you will end up doing it in your spare time and it's a major undertaking.
- Ask other people what they did. Disabled young people and families who have been there before you often have a wealth of useful advice about where to compromise, what to insist on and changes they would make if they were starting to plan again. Organisations run by disabled people are good places to ask.
- You will need to approach potential contractors to find out how much the work will cost. It may be best not to say how the work will be funded to avoid inflated quotes.
- Choose the contractor with care. Personal recommendation is best. Any problems will be left for you to sort out and the DFG is likely to be withheld unless the work is completed to a satisfactory standard.
- For more information and advice about equipment contact the Disabled Living Foundation. Tel: 0845 130 9177; Textphone: 020 7432 8009
- Foundations can tell you about local Home Improvement Agencies, to help you improve, maintain or adapt your home.
- Contact a Family produce a detailed factsheet about benefits, including Social Fund payments and Housing Benefit. Freephone helpline: 0808 808 3555 (Monday to Friday 10am to 4pm).
This factsheet was written by aMAZE and the Audit Commission.