“The true measure of any society can be found
in how it treats its most vulnerable members”

Dear politicians, candidates and political parties,

As I sit down to write this, the general election here in Ireland is only 3 weeks away. My reasons for writing this open letter to all of you is two-fold: 1) I want to share with you what PROFOUND disability means and entails, and 2) I want to ask you, in advance of the election, what you and your party will do specifically to help improve the lives of children and adults with PROFOUND disabilities, as well as their families who are usually their full time, unpaid, carers.

I’ll start with the first point: What does it mean to be PROFOUNDLY disabled? 

Generally speaking, a person is classified as profoundly intellectually disabled if their IQ is, or is estimated to be, at 20 or below. More often than not, profound intellectual disability is accompanied by physical disability or indeed multiple disabilities and/or medical conditions. Some examples of these are: vision loss, hearing loss, epilepsy, feeding and/or swallowing issues, breathing issues, cerebral palsy, orthopaedic issues, gastroenterology issues, skin breakdown concerns, being non-verbal. Mind you, that list is not fully inclusive, but it is a good starting point in describing how people with PROFOUND disability require full, complex, around the clock care – including medical care – and are unable to take care of themselves.

On to my second point: What will you and your political party do specifically to help better the lives of the profoundly disabled members of our society?

A few years ago, I got together with a few other parents of profoundly disabled children. Their children are actually adults now whereas my son is a teenager. All profoundly disabled. All of us are full time, unpaid, carers. We established an advocacy group called Profound Ireland. As election looms, I can safely say that we are all in agreement that services and supports for the profoundly disabled members of our society are sorely lacking. Much reform is needed. More services are needed. And we as carers need much more support to continue providing the intensive care required for our loved ones.

Below are just 10 points I would ask you to consider and to then please reply to me with what you and your party will do to help better our lives. I can be contacted via this blog or on Twitter at @addressinglife.

10 Questions…will you:

• Ratify the Optional Protocol to the UN Convention on the Rights of People with
  Disabilities without delay?
• Fully commence and provide appropriate funding of the Assisted Decision Making (Capacity) Act?
• Increase funding for services for profoundly disabled individuals and ring fence that funding?
• Expand respite services and set them on a statutory basis?
• Assure equality of respite hours and services across all counties in Ireland?
• Fund in-home nursing respite if requested by family and without the Loco Parentis restrictions?
• Provide home care packages on a statutory basis, including an increase in financial assistance such as reduction in electricity and waste charges considering the above-average costs incurred by families with a profoundly disabled child?
• End the post-code lottery of services being provided and assure families across Ireland will have equal access to all required services?
• Decrease waiting times for all procedures and treatments for profoundly disabled individuals to a maximum wait 30 days?
• Reclassify the family carer roll of a profoundly disabled loved one from social welfare into a Carer’s employment contract resulting in an income at fair market rate with salaried wage complete with payment into PRSI and pension?

I look forward to your replies. 

Signed, Tracy, mother and full time, unpaid carer to Brendan Bjorn (15) who has profound intellectual and multiple physical disabilities with a life-limiting condition.