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by Donna Lynch, Regional Manager, DSA Northern Ireland
Can we ever really understand what it must feel like to not be able to communicate? Having grown up in a family with two siblings who had language difficulties (both siblings having Down’s syndrome), we as a family were more patient when they were trying to communicate.
We used gestures, body language and images when we got stuck, like “show me”. We found this worked really well as my two siblings drew images with their fingers or used all forms of their body language to their full potential. Often when communication was achieved I would think “Oh yes I get it, that was so clever how you tried to show me what you wanted”. My siblings never failed to surprise me with their ingenuous ways of trying to be understood.
Having worked with and for people with learning disabilities all my life (I’ve worked at the DSA for the last 18 years), I am always humbled at how much people want to participate in the world around them even though they may have many communication obstacles. From children to adults most people are enthusiastic about engaging with the world and want the opportunity and help to do so.
I love Makaton, it is an easy sign language used in conjunction with language to help develop speech. In Northern Ireland we have had ten Makaton workshops for parents and professionals this year.
Why do I think Makaton fits perfectly with someone who has Down’s syndrome? A person with Down’s syndrome is often a strong visual learner, they model behaviour, they learn from hands on activities, they learn through repetition, they can remember auditory sequences, they enjoy praise, they need longer to process (symbols are excellent for this). When we want to teach, we must use the strengths of people with Down’s syndrome as they learn to read, write and develop language.
I have seen first-hand the advantages of Makaton to individuals and families. I have seen how communication for the individual has become a rewarding experience and one they want to keep trying. I have seen how parents have to be committed and persevere when using Makaton.
Makaton is life changing; it can remove obstacles for individuals and families. I have seen the results: that one human being can have a richer relationship with another because they are understood.
In Northern Ireland we run Makaton workshops for stages 1, 2, 3 & 4. The training is open to all.
Full details & to register see:
More information see DSA Support and Training services
A brand new Housing charity offers a tenancy and opportunities for personal development in a 4 person shared house at 18 Torquay Road, Newton Abbot, South Devon for people with Learning Disabilities. Generous accommodation, including exclusive use of double bedroom, shared use of two bathrooms, shared use of two sitting rooms, kitchen/dining-room and laundry. Care support (including 7 nights sleep-in), and daytime development opportunities, provided by a CQC rated “outstanding” provider.
Applications welcomed from a fourth prospective tenant with eligibility for appropriate financial support and compatible personality with three founder tenants, for a happy, active, partially communal, household.
Younger age range preferred. Rent and other Housing costs within Housing Benefit limits.
Housing Independent People Limited (registered as a charity under number 1160664).
The Down’s Syndrome Association does not recommend any product or service. This article is for information only.
Originally posted on Down 2 Earth Magazine Editor's Blog:
Hilton Hotel visit by Becky
this is a Guest blog about Becky’s work.
“In April I went to the Hilton Hotel. I went with the Project SEARCH at St Georges trainees, my tutor and job coach. I went on a mini-bus with a lovely driver to take us. It was a very long journey to the Hilton hotel; also it was a new experience for me on a motorway. It is a lovely journey to the hotel, the Hilton hotel is big and we checked into reception and meet with another Project SEARCH team!
I took a seat with two other trainees and waited whilst the others went to the toilet. I met a lovely lady called Clara, and another trainee called Reece gave us a tour. I saw other trainees working in the kitchen, the hotel was posh and clean. I went to lunch at Fat boy’s café; I had…
View original 166 more words
Making Provision for your loved ones
Leaving a will and paying for a solicitor to set it up when you have a child with Down’s syndrome is vital. There can be a fear of solicitors and their fees, however this is the time for getting the best advice you can afford, as you are setting up something important to safeguard the future of your child and give you peace of mind.
Looking for a solicitor
When looking for a solicitor, check that they are STEP qualified (Society of Trust and Estate Practitioners). It is worth paying for good advice. A solicitor should be able to give you a price over the phone and also tell you how long it will take to draw up the will and trust fund. If they cannot, do not use them. The regulatory body is very strict, so if you are told it will take 3 weeks and it has taken 5, then you should not be billed for it. Do not pay up front fees and make sure you are happy with the work before you pay. Take a list of your assets to the meeting as it will save a lot of time.
The pitfalls of poor advice
Here are 6 things that parents routinely do which can have undesired consequences:
Writing a will but excluding your child with Down’s syndrome. Many parents think that they can leave the money with their other children and that they can look after them. However, if there is no provision social services can bring a claim against the estate because provision has not been made. This means court fees and legal fees would need to be paid.
Leaving it to another sibling with the proviso that they look after their brother/sister. If this sibling went bankrupt, then this money would be taken away. If they divorced, again the money would be taken into account in a divorce settlement.
Leaving property to the child with Down’s syndrome– you need to look at how the property will be cared for and maintained as it can lead to a deputyship order costing around £2000.
Setting up a discretionary trust fund without any letters of wishes detailing how the fund is to be run and what the beneficiaries likes and dislikes are.
Not telling relatives that there is a trust fund set up. If they know about it, grandparents or other friends/relatives could then alter their own will to have money sent directly to the trust fund rather than the person themselves (if your child is on means tested benefits it can affect benefit if the money is paid to them directly). It doesn’t cost much to add this into a will.
Leaving money directly to someone on means tested benefit. Their benefit may stop if it is above the prescribed limit of £16,000 or reduced if it is an amount between £6,000- £15,999. They will then have to use their inheritance to live on and pay rent. Once it has run down to below £16000, they will have to re-apply for all the means tested benefits, keep DWP and housing benefit informed of the decreasing capital so they can increase the benefits and also find someone to help them complete and understand the forms.
Setting up a Trust Fund
You can set up a trust fund as part of your will and leave money in it for your child’s provision. You can set up a pilot trust by placing just £10 in it whilst you are alive. Money left by other relatives can go directly into this (they will have to state this in their will). You can name as many people as you want to be beneficiaries of the trust fund. In your will, you can make gifts and money gifts to friend and families. Once the gifts have been given, the funeral bill and utility bills taken, you are left with the residue which will form the basis of the trust fund.
The best kind of trust fund to set up is the discretionary trust fund or the disabled person’s trust fund. The disabled person’s trust fund recently changed and is now similar to the discretionary trust. If inheritance tax will be an issue then look at the disabled person’s trust fund, if not, the discretionary trust fund is fine to set up.
IT IS ADVISABLE TO REVIEW YOUR WILL AND TRUST FUND EVERY 2-3 YEARS
Requirements of the Trust Fund
The discretionary trust fund requires a minimum of two trustees to run it and more than one beneficiary. You can name a charity as a second beneficiary if you have no one else to name in the trust. However, the more beneficiaries you have, the better. The trustees can be lay people, professionals -such as a solicitor or an accountant or a trust company.
If you have no one to operate the trust and need a third party, it is best not to use a bank because they currently charge 4% of the total value of the estate. There are other companies, for example charitable trusts, who charge less than half this amount and are also aware of the needs of people with learning difficulties.
Duties of the trustees
The duties of the trustee are serious and they are accountable for the running of the trust. They have a duty to invest the money with a professional, independent financial adviser and should not invest the money themselves. If they chose to invest the money themselves and lost some they would be fully liable and the trust would pursue them for the monies lost. If it was lost through an independent financial adviser, the trustees would not have to repay the money.
The trustees exercise their discretion and decide how the money is spent. In the case of someone on means tested benefit, the trust pays for goods directly; this way it never passes to the beneficiary in a way that affects their benefit.
Set up correctly, the trust will not affect any benefits that your son or daughter receives. Along with the Discretionary trust fund you will need two letters of wishes.
Letter of wishes – two please!
The first letter gives the pecking order of who is to benefit, so you would put the person you most want to benefit first. On their demise the money would pass to the second in line and so on.
The other letter gives the likes and dislikes of the child. This is really important because the trustees who run the fund may not know the beneficiary very well or at all if it is a trust company. In this second letter of wishes you can include information about their likes and dislikes, for example, if they like to go to a weekly football match or if they like to visit certain places etc.
This is a short introduction and in no way intended to replace professional legal advice.
New legislation covering pupils with additional needs in Wales is anticipated to come into force from September 2017
Many of you will be aware of the long road being navigated towards a new Additional Needs Education Bill Wales. This process began as far back as 2008, with the publication of a consultation entitled “Statementing or Something Better”. The last 7 years have been spent reviewing the current legislative framework, piloting new ways of working and shaping the content of the proposed Bill, which was issued for formal consultation last year and is set to go before Welsh Assembly in June of this year. It is anticipated that the new legislation covering pupils with additional needs in Wales will come into force from September 2017.
The Down’s Syndrome Association, through our Wales Manager, Julian Hallett, has played an active role in helping shape the new policy documents. Through a consortium of Third Sector disability organisations in Wales (including NDCS, AFASIC, RNIB, SCOPE, Children in Wales and SENSE) Julian has been part of a Task and Finish Group facilitated by Welsh Government who have been advising policy makers on the structure and content of the Code of Practice which will set alongside the new Education Bill Wales when it comes into force.
Topics (which will hopefully find their way into the new Code) currently being discussed include:
Transitions across the ages from birth-aged 25
Shape of the new IDP (Individual Development Plan)
Roles and responsibilities of key parties including local authorities, school and SENCO
Provision of advice, disagreement resolution and Tribunals in Wales