thalidomide the irish experience presentation2

Thalidomide preparations in the form of tablets, syrup, suspension, capsules, drops and suppositories, marketed under different brand names, sold in Ireland between 1958& 1962, by Messrs T.P. Whelehan, Son & Company Ltd. The preparations sold through pharmacies as “over-the-counter” medicines. For a period of time it was also prescribed by general practitioners.

BRIEF HISTORY

The Irish redress review board ultimately accepted Thirty-four children as survivors ofThalidomide. Department of Health and Children currently claim, “thirty-one Thalidomide survivors are receiving Pensions”.

Correspondence from Dr. Victoria Coffey sent 23rd March 1963 by to the Department of Health and subsequently on October 12th 1964 to Prof. Lenz, Germany). Stated, “The number of babies in Ireland with limb anomalies considered attributable to the drug Thalidomide was 105. Of these, 87 were actually born alive but 23 died in the neonatal period. The remainder of 64 had malformations of varying severity”.

BRIEF HISTORY

In May 1974, after a decade of intense lobbying by the parents of the Irish children, the Irish Government finally entered into a commitment of redress, the Irish government finalised their commitment with the statement, “as a matter of principle, to add to the compensation

payable from the German compensation scheme to Irish Thalidomide survivors and their families”.

Tánaiste and Minister for Health Mr. Brendan Corish on the 9th of January 1975: “to see that the children are provided with all

the services and aids necessitated by their handicaps in order for them to lead as normal a life as possible”

Thus, the Irish government agreed to follow a similar path to that of the German compensation scheme:

BRIEF HISTORY

One of the key points of the health care agreement at the time was that the objectives of the commitment would meet pace over time with increasing money values and cater for the increasing essential services and aids necessitated by our disabilities.

Thirty-five years on, we assert that the treatment we now receive is inadequate to keep the spirit of the aforementioned agreement. We feel that the commitment embodied in the agreement has not made recognition of our unique situation as Thalidomide survivors in Ireland.

The support we receive from our Governments commitment of 1974, does not and has never addressed the ever-increasing needs for more facilities particularly given the infirmities that old age now brings on top of our already significant disabilities.

BRIEF HISTORY

•lump sum German government. ranging between DM7, 500 and DM25,000

•German monthly allowance* for life ranging between DM500 and DM25,000

GERMAN COMPANSATION SCHEME 1974

RELATING TO IRISH SURVIVORS

IRISH THALIDOMIDE

REDRESS SCHEME, 1974

•lump sum from Irish government, ranging between IR£6,600 and IR £21,300, (old Irish pounds)

•Irish monthly allowance for life, ranging between IR £31.75 to IR £75.00. (old Irish pounds)

•All Thalidomide survivors, resident in the State, were granted medical cards without means testing.

IRISH THALIDOMIDE REDRESS SCHEME, 1974

•All payments connected to German and Irish Pensions, whether lump sum or monthly, are tax-free. In 1974, the income taxes acts were altered; leaving us judged as exempt from tax, and 1986 deposit interest retention tax was included.

•The allowances were increased in line with social welfare

•A Health care package comprising of services and aids necessitated by our disabilities. To lead as normal a life as possible was promised.


•Claims in respect of medical and legal expenses, incurred by parents prior to settlement, were met by the then health boards.

•In addition in 1987 all survivors unemployed were official granted: payments connected to German and Irish Pensions, whether lump sum or monthly, are not reckonable for State benefits e.g. disability allowance.


Table of - Monthly/Annual income

Least severe(A) Most severe (B)

German allowance €371 €1,116

Irish allowance €515 €1,109

Total monthly allowance €1,735 €2,225

Total yearly allowance €20,820 €26,700

Special German annual payment €460 €3,680

Total annual allowance €11,092 €30,380

Those who have full time employment

Average Annual Earnings for Full time

Employees (1998 to 2010) (Euro)

€33,111/€ 44,909 For Most severe it is not

possible to work.

Disability allowance of

€849 per month

2010 MONTHLY/ANNUAL INCOME


The Minister for Health and Children has now authorised access to the Department records associated with the Thalidomide Settlement of 1974.

Which are now been looked over by our legal team. We are quite despondent with the Ministers expectations for us to accept a take it or leave Settlement, without provision of information or an in-depth symposium regarding the proposed

elements of the Settlement, or timeframes for implementation.

For now we will continue on the same path of talks with political pressure, possibly soft media pressure if necessary and legal representation.

WHERE WE ARE AT WITH OUR

NEGATIONS

Activities we are working on at the moment

A multidisciplinary assessment/process to address the many other complex issues we suffer from is to be put in place. The time fame expected is December or early January next year, this

time frame will have legal implications.

We have requested further talks and in more detail on this and other matters regarding the proposed heath care and financial Settlement. So far, we have had a somewhat positive

response. However, it still requires work.

ITSS feel the proposed financial settlement in its present form, finds favour with those who are significantly less disabled. We will be urging the financial cost of reasonable normality/quality of life is higher to those with a more sever disability.

Activities we are working on at the moment

SOCIAL SYSTEM &

OFFICIAL PUBLIC BODIES

•Health Service Executive.

•Department of Health and Children.

•Revenue Commissioners.

•Local councils if remodelling work is necessary. (This service is no longer available for the foreseeable future in most councils due to our present economic situation)

AIDS AND APPLIANCES

•This equipment is covered by our medical card since 1974 . However, since then and to date these appliances are not so simple to attain because it depends on the budget of the area you live in and the price of the appliances you require.

•we can not contribute to the cost of appliances because of insurance. Therefore, it is the property of the HSE

•We must wait 5 years before we can apply for a wheelchair again. we can only have one wheelchair at any given time.

•Environmental control and home remodelling are provided by local councils and can only be granted once in a life time in each council. (if this service is available in your area).

•There is no financial help to maintain or upgrade any of the work once it is done.

CAR & ADAPTATIONS

The Motorised Transport Grant is a payment for people with disabilities who need assistance to buy a car. It is means tested by the Health Service Executive (HSE). It This payment is also for people

who need to have a car adapted in order to enable them to drive and to earn a living.

The maximum payment is €6,000.

The Disabled Drivers and Disabled Passengers Scheme provides a range of tax reliefs linked to the purchase and use of vehicles by disabled drivers and disabled passengers. Under the terms of the

scheme, you can claim remission or repayment of vehicle registration tax (VRT), repayment of value-added tax (VAT) on the purchase of a vehicle and repayment of VAT on the cost of adapting a vehicle, up to a maximum of 9,525 euro for a disabled driver and 15,875 euro for a disabled passenger.

The balance must be found by person requiring the car.

•Completely or almost completely severely restricted as regards movement.

•Have the medical condition of dwarfism and serious difficulties of movement of the legs.

•The pre-tax cost of adapting the vehicle must amount to at least 10% of its pre-tax cost.

•April 2010 as a result of recent events the government have said all thalidomide survivors can avail of this scheme.

To qualify for tax relief under this scheme, you must be :

PERSONAL ASSISTANT (P.A) & HOME HELP (H.H)

tasks may include:

•P.A: Personal services: help with getting up, using the toilet, bathing, dressing, preparing food, eating, interpreting, etc.

•Social activities: socialisation, visiting family and friends, helping with children, leisure activities, holidays and travel

•Employment and education: assistance getting to work, assistance in the workplace or at college.

•H. H: Domestic services: cleaning, washing, shopping and preparing food

• However, H.H is budget dependent and P.A’S are geographically dependent and not all are trained as P.A’S with long-term disabilities in mind.

•In the rural areas Most are trained as home care attendants & home helps for the elderly.

•Assisted living/PA’S are provide by service provider organisation/charity’s

• It is almost impossible to get P.A service once you are married due to shortage of funds for service providers, such a service must be prioritised.


Currently disabled people in the republic of Ireland do not have the right to direct payments, therefore thalidomide person live by the same rules.

However, there is a evaluation taking place shortly regarding a Home Care Support Scheme which is state funded


HEALTH SYSTEM

•The use of physiotherapy is budget controlled and can be used free by any one who holds a medical card. However, there is

long waiting lists and it can only be used on a the short term basis.

•Long waiting lists also applies to most other types of mainstream therapies.

•All alternative methods of therapy are not available on the medical card. These must be paid for privately.

•We may choose our own doctor as long as the doctor is on the state medical card list.

thalidomide the irish experience presentation2

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