Do you have a loved one with Down syndrome?
Have you ever wondered how much they are worth?
Give or take a bit in kiwi dollars – that’s 38,000 British Pounds at today’s exchange rate.
That’s according to this report for the New Zealand National Screening Unit (NSU) that was prepared by Health Outcomes International (HOI). The NSU engaged HOI in 2007 to:
“…inform its decision as to whether a national antenatal screening programme for Down syndrome should be established in New Zealand.”
That programme was implemented in 2010.
The report is quite long, running to 68 pages. It mostly covers technical aspects of screening and the practicalities of delivering a national screening programme.
It also talks about the costs effectiveness of running a national screening programme for Down syndrome.
Warning: It’s not nice.
“A further assumption regarding the establishment of formal screening programmes is that the programme will be cost beneficial for the population, and the health system.”
“….the economic costs of screening outweigh the high costs associated with the long term care needs of an individual with Down syndrome.”
“It is cost effective as the estimated cost of avoiding the birth of a baby with Down syndrome (about 38,000 pounds) is substantially less that the lifetime costs of care.”
“while some may feel that the cost of about 40,000 pounds sterling to prevent the birth of a baby with Down syndrome to a woman under 30 may be expensive, it is low compared with the costs of caring for someone with Down syndrome.”
Which is uncomfortably close to this:
“60,000 Reichsmark is what this person suffering from a hereditary defect costs the People’s community during his lifetime. Fellow citizen, that is your money too.”
That is from the Action T4 euthanasia programme. Eugenics. See how they both talk about the costs (read “burden”) of care as a justification for not having them amongst us.
The report also talks about the benefits of screening. They actually mean effectiveness:
“Down syndrome screening programmes are effective in detecting Down syndrome abnormality.”
In the section on “benefits of screening” there is no identification of any therapeutic benefit to the one with Down syndrome, or the mother.
“Reproductive decisions” are listed as a benefit:
Termination is mentioned 17 times in the report.
Bottom line. If you have a child with Down syndrome, they reckon they’re worth $74,768.91, more or less. That’s how much of our money they are happy to spend to stop our children being born.
That’s not nice.
It’s not just the NSU in New Zealand. Most of the research links back to the United Kingdom. THE UK National Health Service have “The Decision Planning Tool (DPT)” This is:
“… an instrument to aid Trusts, commissioners and health professionals plan, improve and monitor Down’s syndrome screening practices by assessing the costs and effects of first and second trimester screening strategies.”
There’s that word cost again. But this time, the costs and effects are measured by a thing called TOP: Termination of pregnancy, on sheet 8 of their spreadsheet:
Bottom line. A termination rate of 79%, more or less, makes an effective national screening programme.
That’s not nice.
We like to be nice. Our position statement on screening says:
“We acknowledge that for some, antenatal screening and diagnostic testing may reassure parents or help some parents prepare for the birth of a child with Down syndrome. We believe that any antenatal screening and diagnostic testing must respect the life and integrity of the unborn child, cause no harm, be only directed towards safeguarding or healing the unborn child and be presented in a way that does not discriminate against people with Down syndrome.”
It looks like others may have a different agenda.
It would seem to be more about money and termination rates.
We would prefer unconditional love, acceptance and respecting basic human dignity.