Having to say no to families who want to do the very best for their loved ones and get the intellectual disability support services they deserve is heartbreaking, writes Sean Abbott.
I have had the very great privilege to have worked with many hundreds of people with intellectual disabilities and autism and their families for over 38 years here in Cope Foundation.
Never in all of my time here can I remember a funding crisis and waiting lists as exist today.
Having to say no to people who want to do the very best for their loved ones is heartbreaking but that is where we are at present — many of my colleagues, as I am writing this, are meeting with
families, and are having to say no to them even though they know that those very people badly need our services.
They have to do this because we just don’t have the resources to support every person, as they need it, despite them clearly deserving it.
Cope Foundation supports over 2,500 children and adults of every ability to live ‘Your Life, Your Way’.
We work to enhance the lives of people with an intellectual disability and/or autism; working in partnership with them, their families and local communities to provide a broad range of person-centred services and supports.
We offer these services and supports through our network of 69 locations all over Cork city and county.
As one of the largest providers of services and supports to people with intellectual disabilities and/or autism in Ireland, we need a significant increase in funding of over €30m per annum to meet the rapidly growing demands of our service.
A detailed comprehensive service review, designed to examine the requirements of Cope Foundation up until 2023, has been presented to the HSE.
Significant investment in key areas is required, and there is urgency around many cases.
There are currently 400 children awaiting assessment for autism spectrum disorder.
Of those who have been assessed, there are over 1,350 children currently awaiting specialist intervention.
Some have been waiting for years.
Of the adults requiring support, there are 174 currently on a residential waiting list, with many having nowhere to call their permanent home.
There are 649 adults identified as having “changing needs”, who currently require further intervention and support to meet these changed needs.
The statistics tell you one thing, but the human stories tell another. Those are the real lives affected by the shortfall.
Consider the following scenarios.
Can you imagine if your parents have passed away and you now have to move from house to house, week to week, from brother to sister — effectively couch-surfing — because we in Cope Foundation cannot provide a home for you in which to live?
Can you imagine a family whose children with autism spectrum disorder who may never see a therapist in Cope Foundation, or maybe once in their lifetime?
Can you imagine sitting in front of a 90-year-old woman looking after a son with a disability, at home on her own, who you have known all your working life in Cope Foundation, and when she comes and asks for help, you have to say no?
It is utterly tragic, demoralising and heartbreaking. My colleagues and I are making such impossible choices every day.
Yes we are professionals, we have a job to do but working in Cope Foundation gives us the privilege of building long and lasting relationships with people and their families.
When you cannot help someone you may have known for many years when they ask for help, it is personally crushing and goes against everything you want to do both as a person but also as a professional.
Replicate these real-life scenarios by the hundreds and you can see why we feel we need to make the public aware of the strain on our services, as well as getting a better understanding of how we do the very best we can for the people we support in the most difficult of circumstances.
The bottom line is this: We in Cope Foundation are in the impossible position of allocating services to some and declining others, even when everyone should be able to avail of equal services.
If you could get to meet the amazing people we support and see how with the right supports and services they can flourish and achieve, and get to work with 1,100 of the most committed and
motivated colleagues who take their role in supporting people as seriously as they do their own families’ wellbeing, you would understand why I consider it a life’s blessing that I have been able to spend 38 years here.
It is more than a job — it is an extraordinary privilege.
After those 38 years, these are the longest waiting lists that I have ever experienced, the worst I can remember for strain on services.
People are looking for residential services, children looking for intervention and assessments in autism spectrum disorder, changing needs across the organisation — it’s as bad as I have ever seen it, and it is very difficult for all of us in Cope Foundation to say no constantly.
I am not apportioning blame to anyone or anything. It’s just the way it is.
It is emotionally very trying but we are doing our best. I’m sure others in Government and health circles are doing the same but I can only tell you how it is on the ground.
We are extremely grateful for all the funds we currently receive from both the HSE and the general public.
The people of Cork have never been found wanting in the support they have given us. We are eternally grateful for every cent we receive.
All those donations add up significantly, but they are just a portion of what we need.
Cope Foundation has identified the need for an additional investment of more than €30m per annum between now and 2023.
Cope Foundation has already engaged with the HSE to make them aware of the need.
Over 40% of the adults currently supported by Cope Foundation are over the age of 45.
The organisation also urgently needs to design and develop a range of individualised services and supports as that population ages.
This includes the purchase of assistive technology solutions to ensure these people maintain their independence, and do not require increasingly costly interventions.
Cope Foundation is planning to increase its fundraising activity around specific projects, such as technology and facilities.
In the months ahead, we will be undertaking a significant awareness campaign of the challenges facing Cope, and outlining ways that people and businesses can help.
We know there are a whole range of excellent organisations that need more funding, we know there are brilliant charities to which the public donates.
We can only state our case as honestly and accurately as we can. We believe it is a good case.
We hope people are listening.
Sean Abbott is CEO of Cope Foundation