A Special Child in the Family

The Professionals

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Standing up for your Child

Sadly, at some stage you may feel your child is not receiving the best possible help. Perhaps essential equipment has still not arrived months after it was requested, you've been refused a benefit that you are sure you are entitled to or your education authority is refusing to send your child to the school best suited to his needs because it is outside their area. Whatever the problem, you can help your child by standing up for his rights. Don't assume no one will take any notice. People will read your letters and listen to what you say.

Find out what the problem is

Before you can decide what action to take, you need to know why the problem has arisen. Is the education authority refusing to send your child to the school because of cost or because it is full? Was the benefit decision based on the correct facts or did a visiting doctor complete the form incorrectly? Has your occupational therapist forgotten to order the equipment or is she doing her best but being thwarted by manufacturer's delays?

Suppose, for example, you are angry because your child had to wait three hours before a doctor set up an intravenous drip. This may have been unavoidable because all the doctors on duty were busy saving another child's life. Alternatively a junior doctor may have dozed off over his coffee after working forty eight hours without sleep or the doctor concerned may have been lazy and inefficient. Only in the last case, might a complaint about the doctor be justified. In the first case it would be unreasonable while in the second you might consider complaining instead about the system which made the doctor so tired in the first place. You will only know which action to take when you understand the background to the situation.

To find out the reasons for your problem, contact the person or people concerned or their immediate superior. Your consultant is a good person to contact about difficulties arising in hospital. Describe the situation worrying you and ask why it happened. It can help the person to reply if you ask specific questions rather than just asking for a general explanation. For instance, in the case of the benefit problem, you could ask for a copy of the visiting doctor's report.

Once you know what is wrong, you need to decide what action, if any, to take. Be reasonable. No system is perfect and everyone makes mistakes sometimes. Your complaint will be taken more seriously if you are usually reasonable and friendly than if you are constantly grumbling about every little thing.

A letter or a phone call

A phone call has the advantage of being quick but it is easily forgotten, misheard or misunderstood. It also requires an immediate response which is often not as good as one given after more thought. A written complaint or enquiry is better as it provides a permanent account of the problem for reference and allows time for a well-considered reply.

When writing, keep to the point and be clear and specific. If you are complaining that your child was given the wrong dose of a drug, don't fudge the issue by adding grumbles about the sogginess of the hospital chips. If you are writing about a particular incident give the date it occurred and, if possible, name the people involved.

It's better to send your letter to an individual rather than a department as personally addressed mail is often dealt with first. If necessary, phone before you write just to find the name of the correct person and if you are in doubt over whom to contact, aim high. Send your letter to the head of the organisation or department. He or she will pass your letter down to the correct person where it will probably be dealt with before a similar one passed up from someone lower down. Never think someone is too important for you to contact.

Finding help and information

It is much easier to deal with bureaucracy if you know your rights and how the system works. Your voluntary society may be able to help and so may other organisations which offer help and advice to people dealing with authority. You are also likely to find plenty of relevant information on the Internet.

Your local Citizen's Advice Bureau (CAB) is a good source of up-to-date knowledge on many issues, including your local situation. They can be particularly helpful with problems over benefits, an area where the Disability Alliance and social workers may also be useful.

DIAL is a nationwide network of advice centres run by and for disabled people. Your local group should be able to help you find and understand the information you need. They, like the CAB, will know your local situation and may well have useful contacts.

For education problems, The Advisory Centre for Education (ACE) is a good source of information and so is the Independent Panel of Special Education Advice (IPSEA). ACE publishes a useful guide called The ACE Special Education Handbook which gives clear explanations of the law about special education and advice for parents on dealing with problems.

If you feel you need legal advice, you could try a law centre (or similar organisation) if there is one near you or Action for Victims of Medical Accidents may be able to help if your problem fits their field of interest. If you want to consult a solicitor, try to find one who is experienced with your type of problem as solicitors specialise in various aspects of the law. Ask in advance about charges and whether you are entitled to legal aid as lawyers' fees can easily mount to very high levels.

Be assertive, not aggressive

"Don't be aggressive" is much easier advice to give than to follow. I have lost my temper a few times with officials but I have always regretted it. Once you've lost your temper, you have lost control of yourself and the situation. If you shout at someone, they are likely to lose any sympathy they may have felt for you. You put them on the defensive when they may have been helpful.

Unless the matter is so urgent it can't wait, never complain when you are angry. Wait until you have calmed down before you take any action. What you say and write then is likely to be far better thought out and more effective. It's much better to sound determined than cross.

Actions like taking notes at a meeting and asking the name of the person to whom you are speaking can show you mean business. Also both Mum and Dad attending meetings can demonstrate the depth of your concern, especially as there are still some bureaucrats who take complaints more seriously if they come from a man rather than a woman.

Keep records

When dealing with officialdom, keep records so you can refer back to them if necessary. You don't need a complicated system- a large envelope or carrier bag will do. Keep all the letters you receive with a note of when they arrived. Also keep copies (however rough) of all the letters you send together with a note of when you sent them. Write down the date of each relevant phone call you make or receive together with the name of the person you spoke to and what was said. Officials are less likely to make glib promises they don't intend to keep if they know their statements can be traced back to them and, if you need to refer to a phone call, it sounds better if you can say whom you spoke to

Don't be unnecessarily hurtful

In Eastern countries, people believe in the importance of not losing face. The same principle applies here: no one likes being made to look foolish, lazy or incompetent. If you back someone into a psychological corner so he can't satisfy your demands without losing face, he may resist you even more stubbornly than before. It's sometimes worth compromising on unimportant side issues so the bureaucrats can be left feeling they didn't give way completely.

Try not to be unnecessarily hurtful. Give praise for the good things as well as criticism of the bad. It costs nothing and gives you a better chance of a reasonable working relationship with officialdom after this particular issue is settled. There is nothing to be gained from being permanently at loggerheads with everyone.

Counting the cost can help

Bureaucrats push pieces of paper around and usually have little contact with the people they affect by their decisions. Consequently, an argument based on financial reasons can sometimes do better than one based purely on humanitarian ones.

Suppose, for example, that you are to have an operation and have asked for help with caring for your severely disabled child at home while your husband is at work. The authorities say this is not possible but have offered to place your child in a residential home until you are well again.

If you try to persuade the bureaucrats that their idea will have a bad emotional effect on your child and the rest of the family, you may well get nowhere. However, a carefully thought out argument comparing the costs of the two solutions could be very effective.

Make a fuss

Suppose you have tried as hard as you can to persuade the authorities to provide the help you believe your child needs but to no avail. Perhaps you have tried all available appeals procedures without success. Perhaps the authorities are just producing endless delays and incomprehensible replies full of legalistic jargon. Perhaps you are not getting replies at all. What can you do now?

The answer is to make a fuss. Start by contacting your local councillor if your local authority is the problem. If that has no effect or is inapplicable, write to your MP. It's amazing how a letter from the House of Commons can speed up the tardiest of officials and produce long, polite letters of explanation where previously you only received curt notes of indecipherable jargon. One bureaucrat likened the effect of an MP's letter arriving in the office to that of a bomb exploding. He added one note of caution though. The effect diminishes with repetition so don't involve your MP too soon. Save his support until you really need it.

Before I started this chapter I contacted Jack Ashley who campaigned on behalf of the disabled for many years, especially while he was a Member of Parliament. With his kind permission, I quote the following advice from his reply:

I would emphasise to the parents that it is very important not to be put off by bureaucracy, nor to be deterred by difficulties. It is very important to be persistent and for them to insist on action. If they happen to find they are getting nowhere, then I strongly advise them to contact press, radio and television because publicity is a formidable weapon and parents who have been neglected or deprived of their rights should have no hesitation in using it if necessary.

This is good advice based on years of experience, so use it. Sometimes just mentioning you are considering contacting the media can have the desired effect. People don't like being on the receiving end of bad publicity especially if they are hoping for promotion or re-election. Publicity may also help you contact other parents fighting the same battles so you can unite and campaign together.

Many of the national and local papers like campaigning for better treatment of the more vulnerable members of society. A special needs child who is being refused necessary help makes a good story so it is often easy to obtain the publicity you need. Television and radio will sometimes take up such an item too, either following up a press story or providing the initial publicity in campaigning programmes like Watchdog.

Parents do have power

You are not powerless. You can influence events. Much of the help available now for sick and disabled children started as a result of pressure from parents. Some schemes were started by the parents themselves.

Remember the walls of Jericho fell down when all the trumpets sounded at once, not one at a time. If the problem you face affects many parents, get together to campaign for better help: there is power in numbers.