Cri Du Chat Syndrome Support Group

Transition

Lucy Clayton of Connexions of Leicester County Council gave us a talk on the transitional stage of life for the child going from 13 to 25 years of age. Different districts have different age considerations, some stop at 19 others 23 and better ones at 25 years of age.

She reported that she feels her job to be a holistic distribution centre to guide the individual through the maze of rights they have with consideration of inclusion and their independence. Her job would entail come in to meet the team of parents/carers, school, doctors and other medical personnel and care workers to help in assessing the child’s needs to go, if appropriate, on from the secondary school through to college and finally to adulthood. She mentioned that if the pupil could demonstrate learning then they can go on doing courses ad infinitum.

She will also help in the provision of care with after college and ‘full/part time’ educational supervision to facilitate parents going to work; college attendance is usually 3 ½  days per week thus care for the other 1 ½ days is needed.

It became clear that the need for an unambiguous statement would be of benefit to get the best for your child. Inclusion to a local further educational college {FEC} is probably the ‘cheapest option’ for most education services, but she did mention the special residential colleges that would be appropriate if their statement required it and that your local FEC could not provide the help as defined  therein. So keep your dependant’s statement up to date and scrutinise any changes and get unclear needs specified.

Lucy gave us a succinct overview of her job and we thank her for her input.

Useful links:

www.connexions.gov.uk  - was an easy site to browse and from this national website get info on your local services. It is not disabled specific but has disabled button that highlights all disabled related articles and brings them to the top of all listings.

www.lsc.gov.uk  - Learning Skills Council should be able to find out about residential colleges but I found it a hard site to navigate, persevere or ask your local connexions agent.

www.after16.org.uk  - produced by the family fund

www.drc.gov.uk - Disabiliy rights commission

Wills and Trusts

Rebecca Lee; Solicitor with specialist knowledge for trusts for vulnerable people

We all want to provide for our children.

We all want to save as much Tax as possible.

Making a will is a necessity so that your money goes to where you want it.

If you die intestate [no will] then your monies will be split up between all your family, even an estranged sibling could get a claim on your money. It does not automatically go to your partner or immediate family.

It is specially difficult for parents with vulnerable children with special needs. They have to careful so as not to make the child too wealthy that the means tested state benefits and care provisions are stopped.

With this in mind, starting up a trust for your children is strongly advisable. She went over the different types Trust for Disabled Persons [TDP] [child specific], Discretionary Trust [wider specifications and can hide your specific wishes] and Charitable trusts [undefined and dependant on that charity’s constitution], each has it benefits and short comings.

She was very strong in her advice on choosing trustees to manage the trusts so as to have your wishes forefilled after your death.  Have at least one person who you trust who is not family who would not have conflicting interest in the distribution of the trust.

She showed methods ‘vehicles’ of passing over monies from husband and wife to efficiently save death duties with ‘promises to pay’ schemes, she specified the amounts of monies you can pass over during your life time and how long they are subject to death duties [up to 7 years]. You can dispose of £3000 per annum ‘tax free’ any amount over that is subject to death duties if you die within 7 years on a sliding scale of liability.

The current ‘tax free’ allowance from inheritance tax is £285,000. any residue of the estate over this amount is taxed at 40%.

Cost

She guestimated the ballpark figure of £450 [law society guidelines approved] for starting up a trust. She is a ‘Scope’ appointed solicitor who works in the Leicester region so may not be the nearest to you.

Related sites;

www.direct.gov.uk has a good page explaining all the jargon of ‘Settlor, trustee, beneficiary and trust property’ etc. also good for most other things.

www.scope.org.uk is a larger site which can give info on local solicitors, which also pumps for bequests for their trust.

Also look at www.mencap.org.uk this has a wide range of will making advice booklets and lists of solicitors.

Another way is to ask your local solicitors if they are in the know and have they done one before produce a trust/will that is transparent and not going to be challenged by the tax man on your death, with all its costs. So the start up cost may seem high now but later it won’t be challenged with all that expense.

Family Fund

Elaine Rockcliffe

The Family Fund champions an inclusive society where families with disabled children or seriously ill children have choices and the opportunity to enjoy family life.

The Family Fund is a registered charity covering the whole of the UK and is funded by the national governments of England, Northern Ireland, Scotland and Wales. Wales seems to have the most money at the moment.

The Family Fund provides timely grants to families with severely disabled or seriously ill children, based on families' views and needs.

They fund up to the age if 16.

They means test you so that if you earn more than £23.000 [£25.000 in Wales????] or have £18.000 in savings you will not qualify for a family fund grant.

They do not cover persons living in care, fostering nor family relations such as grand-parents.

They provide washing machines, clothes, bed linen, holidays, carpets; averaging £800 for a first application and £500 for subsequent grants. Basically you can ask for things that break due to the extra wear and tear due to your disability. They do not pay for things that would be available for medical needs, or if they should be funded by social care etc. ie wheel chair adaptations or ramps nor accommodation, unless for a holiday.

The grants can be awarded annually and after your initial interview, the follow up grants could be done on-line.

www.familyfund.org.uk

or write to;

The Family Fund: Unit 4, Alpha Court, Monks Cross Drive, Huntington, York, YO32 9WN.
Tel: 0845 130 4542