disability legislation and higher education in scotland
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News Date: News Headlines:
The Henrietta's Dream website is launched on 5th of July 2004 to coincide with the publication of the book Henrietta's Dream by Henrietta Spink, in support of the Henry Spink Foundation a charity which provides information about disabilities and treatments to those with severe disabilities and functional impairments
A new Act of Parliament which is intended to deliver real changes for carers received royal assent on 22 July 2004. The Carers (Equal Opportunities) Act will come into force from 1 April 2005. It should ensure that carers know they are entitled to have their needs assessed. It places a duty on councils to consider carers' work, study and leisure interests when making assessments. It should also promote co-operation between councils and health services to deliver support to carers.
Read the Department of Health press release about the new legislation under 'publications and statistics' at here
Read the text of the bill at here
DISABLED FACILITIES GRANT MEANS TESTING TO BE SCRAPPED
Victory for mother Henrietta Spink and her two disabled boys Henry & Freddie
After campaigning for the rights of disabled children in the UK for over five years, Henrietta Spink and her family are delighted the Government has finally scrapped means testing when applying for a Disabled Facilities Grant (DFG), effective this month. This law has caused untold hardship for her two boys Henry, aged 17 years and Freddie 14 and in the next two weeks the Spink family application will be lodged with the House of Lords. The legal issue affects the way care is provided to all disabled and vulnerable individuals in this country.
DFG means testing has already been abolished in Wales and Northern Ireland and Henrietta wonders “why has it taken me and my family all these years to fight for something to happen in England when it has already been proven discriminatory in other areas? Henry and Freddie could have had a much improved quality of life had we not been subjected to this harsh judgement over the years. But thank God the Government has finally seen sense and passed this ruling.”
Henry and Freddie will still take their case to the House of Lords later this month, as the new ruling only applies to families needing to adapt their homes to care for a disabled child, but there are other far reaching effects of the means testing, as Henrietta and her husband Michael found out to their cost. “As parents we are not owed a duty of care and therefore do not have the right to work. Both of our boys need full time carers and now they are older they need two carers each, all day, every day. Over the years this has meant that both my husband and I have had to give up work to become full time carers, as we were not allocated enough support by our local council. As a result we have now lost our London home, with no work we couldn’t afford the mortgage and who knows where we will be in a few years time, I dread to think.”
With the money from the sale of their home the family paid off their debts and with the remainder they purchased a boat and set sail with the boys, initially to the Mediterranean, with the intention of making it their home for the next two years at least. However, in November this year an urgent call from the USA meant the boys had to travel to the States for a two week trial to check if their neural pathways would be receptive to treatment. The trial was a success and could lead to a brain chip implant, meaning a cure could be in sight for both boys. Henry is globally developmentally delayed owe, he cannot walk or talk, Freddie is autistic but does have some mobility and speech.
If the money can be raised to send the family back to the States the boys lives could be changed for ever. The medical team has offered the treatment for free, the family just need the funds for the flights, accommodation and living expenses while they are there. “It’s fantastic news”, said Henrietta “but it is also so frustrating, it’s like having a lick of a lollipop and then having it snatched away. We simply don’t have enough money to live in the States for six months, which is probably what the boys would need.”
A special fund was set up to raise money for Henry and Freddie when they set off on their life-affirming adventure on their boat ‘Henrietta’s Dream’ and this same fund will now be used to try to get the boys to America for the life changing medical treatment. Contributions can be sent to ‘The Spink Boat Fund’, c/o Montgomery Swann, Scotts Sufferance Wharf, 1 Mill Street, London SE1 2DE.
Anyone wanting to know more about the boys can read their story in a book written by their mother, ‘Henrietta’s Dream’ published by Hodder and Stoughton, £7.99, in all good book shops.
