Back to what you were saying last night and thinking longer-term, what if your son gets into a dispute with the trustees? I'm thinking about the Mental Capacity Act (MCA), in which we have to presume that adults have capacity and that we're legally entitled to make "unwise" decisions. I can foresee a possible situation in which your son (or his advocate) may see your other children having discretion over how they spend 'their' money and want to make his own decisions about 'his' money. Clearly these decisions may count as 'unwise' but a decision would probably have to be made under the MCA regarding whether or not he has "capacity" to make those unwise decisions.

So, I guess that there are fundamental questions about the extent to which the directions given when a discretionary trust is set up have to be carried out - and about if (and when) there's ever a legal basis for beneficiaries (or other people) to challenge the terms of such a trust.

Regards, Cliff Hawkins

http://www.pmldnetwork.org/get_involved/index.htm) so that the needs of people with PMLD can be properly planned for. The PMLD Network definition of profound and multiple learning disabilities could be a useful tool to use in this audit process.

Download from http://www.pmldnetwork.org/what_do_we_want/who_are_we_campaigning_for.htm

Alternatively try: http://tinyurl.com/5s2vb3

The PMLD Network is lobbying the government to collect national data about the numbers and needs of people with PMLD. Information from local audits would be very useful to inform this work. Please email any information that you collect the numbers and needs of people with PMLD in your local area to pmldnetwork@mencap.org.uk . As others have already said, there is a serious lack of understanding of the numbers and needs of people with PMLD. But although there is very little data on the population of people with PMLD, the figures that do exist demonstrate a rise in the numbers of people with PMLD and that their needs are becoming more complex. For example, the Sheffield Care Trust (2006) - summary of findings from Adult Learning Disability Day Services PMLD sub group and additional Case Register information found that the number of 10-14 year olds with PMLD has increased by 75% in the last 5 years, including an even higher number of children with PMLD who will need services as adults in 5 to 10 years time. The figure of 40,000 people with PMLD in the UK is an estimate that the PMLD Network has used for some time and it is now likely to be higher. There is more information about the lack of understanding of the numbers and needs of people with PMLD in the 'including everyone' section of the PMLD Network response to Valuing People Now. Recommendations can be found in the 'Making it happen - the priorities' section.

Download from http://www.pmldnetwork.org/what_do_we_want/latest_news_item_pmld_network_responds_to_vpn.htm

Alternatively try: http://tinyurl.com/3ll64p

Beverley Dawkins National Officer for Profound and Multiple Learning Disability Mencap National Centre 020 7696 5558

The PMLD Network is an opportunity to share good practice, raise issues of concern and provide a valuable information point for both parents and professionals. To join, please go to http://www.pmldnetwork.org/pmldjoin.html

I agree with you. We need to produce evidence of need and then campaign for the need to be met. I'll work to help get the information together with you if you like. Just say what needs doing.

You know Valuing People started off with money to be allocated to CITIZEN Advocacy, but that was redirected to self advocacy groups. I think people have an issue with Citizen Advocacy, in that they don't feel it 'fits' with social model ideas. Of course, they are taking a very simplistic approach. IMCAS (Independent Mental Capacity Advocates) are in no way a viable alternative, as they are only for specific issues. It really concerns me that there are so many people who CANNOT self advocate and have no family to represent them and according to the Report 'Life Chances of Disabled People ', published by the deputy Prime Minister, ' UNFORTUNATELY WE DO NOT KNOW HOW MANY THERE ARE' I find that statement utterly outrageous and shameful.

At CHANGE we work for equal rights for all people with learning disabilities including Deaf people with learning disabilities. Many of the paid staff, and volunteers, including staff with learning disabilities are learning sign language and have already passed their level 1. We have in the past and continue to try to make links with the Deaf community. In our experience many Deaf people with learning disabilities are isolated as they are not part of the hearing community of people with learning disabilities and they are often left out of the Deaf community. Deaf people with learning disabilities have told us that they are often the only Deaf person where they live, no one signs and they do not have adaptations like a minicom, flashing doorbell etc, etc. We would be really interested in meeting you or in any groups that exist to address this.

Philipa Bragman

Director

CHANGE

T: 0113 243 0202

F: 0113 278 3072

E: philipa@change-people.co.uk

W: www.changepeople.co.uk

In the week the funding for ‘Aiming High for Disabled Children’ starts to flow, EDCM is calling on its supporters to get involved in making disabled children a priority locally.

Please write to Peter Dowd - Sefton cabinet member for Children's Services to ask hi9m how this will be implemented. ‘Aiming High’ includes £370 million new investment to transform short break services for families with disabled children across England over the next 3 years. ‘This new money for short breaks is really important. All 21 short break pathfinder areas have received significant funds to drive forward their service development now. The remaining authorities also receive funding to start planning to deliver their services from next year. We need all our supporters, particularly parents and families, to get involved to make sure this happens where they live.’

What is Scrutiny?

The Local Government Act 2000 brought changes to political structures within local government. One effect of these changes was the creation of a Cabinet, given wide powers to deal with the day to day decisions involved in running the council, and the introduction of Scrutiny Committees. Members of the Scrutiny Committees have an important role acting as a check on the Cabinet, holding it to account for its decisions, reviewing Council policies and making recommendations for future policy directions.

What Scrutiny is not!

Although public comments and questions in Scrutiny and Review committee meetings is encouraged, it is not a complaints system and there is a separate Corporate Complaints System in place for use members of the public.

Sefton's Structure

Since May 2006 there are four Scrutiny and Review Committees at Sefton MBC:-

Performance and Corporate Services

Children's Services

Regeneration and Environmental Services

Health & Social Care

These Scrutiny and Review Committees meet regularly and in public. They often comprise non-Cabinet Members representing all political parties. The Committees are entitled to carry out in depth reviews and investigations in to any of a large number of areas of the Council's work, as well as that of external organisations which affect the people of the Borough such as a health authority or external provider of services used by residents.

Each Scrutiny and Review Committee is able to adopt their own style of working and also develop their own work programmes. It is hoped that these work programmes can be developed with contributions from members, Council Officers and the Public.

How do I get involved?

Scrutiny and Review Committees at Sefton actively welcome involvement from the public and seek the views of members of the public on services and areas under review and any suggestion for topics for review. We also encourage the public to attend meetings and/or send their views to the Scrutiny Support Team:

Southport Town Hall,

Lord Street,

Southport PR8 1DA

Larry

I am one of those parents labelled as "pushy", but only became this after several schools and more then enough so called teachers made me become this way. There is nothing wrong with being pushy I have found that it puts teachers and head's on their toes, something they should be to start off with. And you are the specialist on YOUR child, they forget that.

There is a difference between being offensive and pushy. One thing I can advise you is to start looking into the law, any law having to do with your child. Schools often thing they are above the law, but it is the un- knowingness of parents that puts them there. A good place to get knowledgeable is Parent Partnership and the school itself. Get the info on laws.... then hold the school to it. Then see them cringe when you pull them up... its the highlight of my day

--- mad but content 

I think that schools and teachers can sometimes put on a good show at being the experts but it's all a smokescreen. They can't possibly know your child better than the people who live with them. Schools and teachers can be very arrogant, very ignorant and very stupid. They get very frightened and nervous when you are pushy. The instinct is to just close ranks, stick together and ignore you. I went to the governors but they were all tame parents and middle class twits. But I didn't give up. I got some good support from Parent Partnership which really made a difference. What helped me most was meeting a lady called Suzanne who told me her story of turning around the relationships with a very bolshie SENCO and a very bossy headmistriss. She just kept using her knowledge of the law and her SEN Toolkit to insist on the changes she needed for her child. I got inspired by that and her approach worked for me too.

I am one of those parents labelled as "pushy", but only became this after several schools and more then enough so called teachers made me become this way. There is nothing wrong with being pushy I have found that it puts teachers and head's on their toes, something they should be to start off with. And you are the specialist on YOUR child, they forget that.

There is a difference between being offensive and pushy. One thing I can advise you is to start looking into the law, any law having to do with your child. Schools often thing they are above the law, but it is the un- knowingness of parents that puts them there. A good place to get knowledgeable is Parent Partnership and the school itself. Get the info on laws.... then hold the school to it. Then see them cringe when you pull them up... its the highlight of my day

I want to go into school more, especially when something kicks off, but I don't want to alienate the teachers because this could make things even worse for my child. How do I get a balance to be effective without making enemies?

--- Frustrated mum 

Schools are always looking for classroom assistants. You can start be offering to read with children in class. This could even lead to a job (not particularly well paid) and schools might even offer you some training as a volunteer. You could also indicate an interest in becoming a school governor. Again training is available and you can claim expenses for travel to and from training courses. Sefton offer training for governors at their Continuous Professional Training Unit in Formby (location is quite close to Formby station). Sometimes training is bought in from independent providers like IPSEA (Independent Panel for Special Educational Advice). If there are particular problems at school with your child then contact Parent Partnership for advice. They will attend a school meeting with you (sometimes called a 'review' meeting), you can also invite the SEN officer from Sefton and social workers and other specialists to attend. Parent Partnership can help you to advocate for yourself or the can offer an independent mediator from a regional panel. The independent mediator will not have any relationship with the school, with the LEA or with SEN and so they should be impartial. If that doesn't work out then you can bring a tribunal case as a last resort. The tribunals are organised by SENDIST (SEN and Disability Tribunal services), the tribunal panel are independent. There is usually a lawyer (Chairperson), a lay member (often a parent), and an expert (either a disability or a SEN specialist). Again IPSEA or Parent Partnership can advise you about this. There are rules and timetables for tribunal hearings. Preparation is jkey. Don't apply to a tribunal without making sure that you have professional advice, all the evidence necessary and make sure that your case falls within their rules first.

--- Bearded Father 

Hi,

Thanks for responding to this request. Your help is appreciated. We urgently need volunteers and website moderators and you would be great at doing this. Please let me know if you can help out. I can create a privileged accoutn for you on the moderator team. Tham Lodders is leading the moderators. You can contact him from the workgroups page.

Cheers!

I want to go into school more, especially when something kicks off, but I don't want to alienate the teachers because this could make things even worse for my child. How do I get a balance to be effective without making enemies?

--- Frustrated mum 

Schools are always looking for classroom assistants. You can start be offering to read with children in class. This could even lead to a job (not particularly well paid) and schools might even offer you some training as a volunteer. You could also indicate an interest in becoming a school governor. Again training is available and you can claim expenses for travel to and from training courses. Sefton offer training for governors at their Continuous Professional Training Unit in Formby (location is quite close to Formby station). Sometimes training is bought in from independent providers like IPSEA (Independent Panel for Special Educational Advice). If there are particular problems at school with your child then contact Parent Partnership for advice. They will attend a school meeting with you (sometimes called a 'review' meeting), you can also invite the SEN officer from Sefton and social workers and other specialists to attend. Parent Partnership can help you to advocate for yourself or the can offer an independent mediator from a regional panel. The independent mediator will not have any relationship with the school, with the LEA or with SEN and so they should be impartial. If that doesn't work out then you can bring a tribunal case as a last resort. The tribunals are organised by SENDIST (SEN and Disability Tribunal services), the tribunal panel are independent. There is usually a lawyer (Chairperson), a lay member (often a parent), and an expert (either a disability or a SEN specialist). Again IPSEA or Parent Partnership can advise you about this. There are rules and timetables for tribunal hearings. Preparation is jkey. Don't apply to a tribunal without making sure that you have professional advice, all the evidence necessary and make sure that your case falls within their rules first.

I want to go into school more, especially when something kicks off, but I don't want to alienate the teachers because this could make things even worse for my child. How do I get a balance to be effective without making enemies?