People with Additional Needs
What Happens Next ?
My name is John FitzGerald and I have always been interested in 'value for money' when it comes to supporting people with additional needs.
In 1987, my son was born as a Down Syndrome baby. It was not expected and was initially a dramatic time for me and my family when we were told that Paul could expect to live only until he was 38 to 42 years old.
Much happened since then and because of medical advances Paul can now expect to live until he is 65 years plus.
At this time I am 74 and if the health statisticians are right I can expect to live until I am 82+. Considering this, has encouraged my wife and I to consider how we might plan for Paul's care - a possible period of 20+ years - for when we are gone.
My thinking, my understanding ...
My thinking and understanding has been greatly influenced by the work of Professor Peter Gore who developed a concept which he called LifeCurve.
I developed a model of my own and showed it to my friends and colleagues who found it interesting but not necessarily compelling.
Looking to get a reaction, I got some help from family, friends and colleagues who suggested that I should create a simple table to express and support what I wanted to say and that would start a conversation around the concept and management of de-congregated settings here in Ireland.
|Average Life Expectancy of an adult in Ireland with an intellectual disability after their parents death
|Annual Cost of supporting four adults with an intellectual disability in a de-congregated residence
|€450,000 => €550,000
|Weekly support per resident
|€2,000+ per week
|Lifetime support per residence (20 years)
Where to Next ?
First and foremost, I will work to formally validate these figures. Then, I will look to get a fuller understanding of the reasons for the spend of €2000+ per person per week and see how this stands up on a 'value-for-money' basis ?
And then, I will look to review what is happening in two or three other countries and compare them to what is happening in Ireland.
Should you have an interest in this subject, have information or suggestions that you would like to share, please do not hesitate to contact me at john.fitzgerald [@] anamo.net or at 086 8168747.