Ask the Experts

Questions and Answers

QUESTION
My husband and I look after our 22-year-old daughter Maria, who has Rett Syndrome. Maria has 100 per cent health care funding and we have carers for a number of hours per week (with double-ups amounting to 60), some of it used for night cover. We recently moved to a bungalow and paid for costly adaptations including putting fitted furniture into Maria’s bedroom for her pads, feeds, tubes and clothes, but she has no bathroom as the house bathroom is inaccessible to her. We have therefore asked Social Services to fund the building of an extension, to house a wet room for Maria and a room for her carers that will give us all some privacy. Social Services has come up with an alternative plan to squeeze the wet room into her bedroom but that won’t be enough. Maria needs a shower trolley and that uses more space than can be reclaimed by taking out the furniture we installed. In addition, the carers’ room that they propose will only be big enough for a bed and a chair, and as we sometimes have a waking night carer as well as a sleep-in carer, this isn’t suitable. As Maria is an adult, what rights do we have and can we take this further?
Fiona Hagg, by email

Kate Sheehan replies:
On her initial visit the occupational therapist should have conducted a full assessment of the needs of Maria and her personal assistants, as well as your own needs, as this is also your home. She should then have asked you to review and agree her written assessment of these needs, after which the department should have clearly stated how these needs would be met. Any proposals should have taken into account your daughter’s space requirements, as well as adequate space for appropriate moving of equipment e.g. the shower trolley. Any adaptations should also have taken account of what a room needs to make it usable. It’s essential to have storage space in a bedroom for clothes and other essentials, and for these to be close to where they’ll be used without this being hazardous or making the room feel like a hospital. You, your daughter and her PAs should have been at the centre of this process. Funding of necessary equip­ment and adaptations can come from various sources. For adaptations, small works (under £1,000) such as ramping could be funded via the Social Services budget as a one-off job. Major adaptations such as a wet room are usually funded by a Disabled Facilities Grant (DFG), administrated by the housing department of the local council. The DFG can be used to make access to and use of the main rooms in a property easier. The grant is a means-tested mandatory grant, with an upper limit of £30,000. The occupational therapist will usually decide if the works are necessary and appropriate, and what you have said suggests that they’ve already agreed to some adaptations in principal but don’t seem to have defined clearly what these are or discussed with you their appropriateness. Once a full grant application has been completed, the LA has six months to make a decision on whether it feels the work is reasonable and practicable, though what usually happens is that the LA doesn’t complete a full application until it knows it has the budget to do so. I’d say the LA has a duty to find the money from other budgets as this is a reqiurement under primary legislation. So go back to the occupational therapist for a copy of her full report and ask why no grant has been applied for. If she says there’s no money available, the Social Services department still has a legal responsibility to meet your daughter’s needs under the Chronically Sick and Disabled Persons Act 1970 (CS&DP) Section 2, and will have to find the money from its own budgets. There’s no provision under either the DFG legislation or the CS&DP to provide space for PAs and this would only be offered were discretionary funding available.

QUESTION
Many RADAR locks on public disabled toilets can be opened from the outside by another RADAR key holder, even if the toilet is engaged and locked from the inside, so I’ve been trying to get a city council to fit an alternative locking device. The council in question has agreed to fit new locks as soon as a better alternative is found. Can you suggest a good product?
Harold Walters, by email

Agnes Fletcher writes:
The RADAR lock has been around for almost 30 years. By modern standards, it is not very sophisticated and this is both an advantage and a source of criticism. The lock is designed for access and privacy. When fitted correctly, the outside indicator turns red to show that the loo is occupied. When the user pushes the handle on the inside upwards, entry is impossible for anyone else, even if they have a key. Where access is needed, for example in a medical emergency, and the door is locked in this way, a flat headed screwdriver or a penny coin can be inserted into the outside plate and turned to open the lock. This provides a good balance between privacy and safety, in the rare event that someone should need help, for example as a result of a fall or a seizure. If the lock is fitted incorrectly then, yes, the door can be opened by another keyholder, as the lock is not engaged. This could have happened because a right hand set has been fitted to a left hand door or vice versa. So can I ask you not to follow this course of action? To do so would fragment what is a very useful service that enables disabled people to use accessible loos wherever they are in the UK. Having separate locking systems in use around the country would undermine disabled people’s mobility. It is highly likely that the problems you have experienced are due to the RADAR lock being fitted incorrectly, so please ask the local authority to check this out.

THE EXPERTS

We have experts who can answer questions in many areas that matter to us.
Sexual & Personal issues: Simon Parritt, a counselling psychologist who has studied psychosexual therapy, was the only disabled director of the Association to Aid the Sexual and Personal Relationships of People with a Disability (SPOD).
Legal Matters: Douglas Joy, senior solicitor at the Disability Law Service, and his colleagues give advice on disability and the law.
Benefits and Debt issues: The Citizens Advice Bureau puts its expertise at our disposal to help you.
Technology and Internet: Léonie Watson from digital consultancy Nomensa is here to get you connected and keep you up and running.
Specialist or Adaptive Equipment: John Mandrak, for nearly 25 years a disability journalist and consultant, gives advice on the Disabled Living Foundation’s helpline.
Travel: Andy Wright is managing director of Accessible Travel, a specialist tour operator providing holidays for people with mobility impairments, and has huge experience in the travel trade.
Money management: David Clarke has spent 14 years in banking and has worked for three leading financial service providers. He is now a senior partner with Clydesdale Bank and his wealth of experience is all yours.
Access & the Environment: Agnes Fletcher is a disability trainer and consultant who can find solutions to access problems.
Property: Kate Sheehan is an independent occupational therapist with 20 years’ experience and a passionate interest in housing solutions for disabled people.
Motoring & Transport: Helen Smith of Mobilise steps outside her Disability Now column to answer your questions on car matters.