Excluded, and alone, the Irish government wants this for me.

Angry doesn’t even begin to describe my emotion. Frustrated, disappointed, bewildered, and exhausted can be added to this list. What is causing me to feel this way? The policies of the Irish government, as implemented by the Department of Health, Department of Employment Affairs and Social Protection, and the Department of Housing, Planning and Local Government have between them decided I am better to live alone, with rapidly reducing mobility, and excluded from society. In this post I will explain why.

Excluded by denying me mobility

As readers of my blog will be aware my mobility has been steadily declining since I was in a car accident nearly five years ago. The last year has seen the most dramatic reduction resulting with me stopping work (see Transition Day). In this time period my neurologist recommended me to check out the Functional Electrical Stimulation device in the local MS Society office. It seems like a minor miracle; it allows me to walk almost normally. A phenomenal achievement. 

In this last year I was in hospital twice, once to get IV steroids, and the second time to get IV immunoglobulin. Both treatments had an aim of improving my mobility and reducing pain. They had no effect, but the cost to the Irish government, and the people of Ireland, was over €20,000 when you take into account the hospital and medicine fees.

On Wednesday the Physiotherapy department, in our local health area, informed me the price of the FES device (about €10,000) was too much, although it allows me to walk, and could continue for years. The HSE (Health Service Executive) sees me as separate pieces, unconnected, and treated from different budgets. 

The impact will be my mobility will get worse, and I will require an electric wheelchair, and also need the Community Care team to provide me with a carer, so I can go shopping, clean the house, etc. I’m not sure what these will cost the HSE, but the impact on my mental health will be severe.

Excluded by reduced Disability Allowance

Disability Allowance is a means-tested payment paid by the department of Social Welfare. As my partner and I are living together, they look at her income, and based on this they give me a small income. At the moment this is €162.70 per week. From this I must pay for my share of the rent (€77.88), food, doctors, physio, gym (for physio), medicine, heating, car costs (petrol, insurance, servicing, NCT test, tires, etc), Netflix and phone. 

Making ends meet on this small income is very difficult and now is impossible. If I live on my own, circumstances would change and I would get a higher payment €203 per week, my rent would drop dramatically to €23 per week (see Housing Support for the reason why), and I would get a carer to help me. Living on  my own is financially better. I could afford my car and even some money to go to the cinema in Galway occasionally.

Excluded from Housing Support

This is another means tested support for people on a low income. In my area a single person, living on their own gets rental support if their income is below €25,000 per annum after tax. Mine is lower than this, and my partners income is also beneath this threshold. However, as we are living together, the threshold is €26,250 per annum, for our joint income. At the moment our joint income is below this, but the local authority, Galway County Council, is assessing our income based on what we earned last year. 2018 is now in the past, and we could pay our rent, and our income was above €26,250. 

I do not understand why our income last year is relevant. It is our income now that is important, and it is now we are under this income level. Appealing the decision is one course of action, and I have, twice, but they continue to look at 2018, not May 2019. 

Now I have to look at the situation closely. By doing some basic calculations, I have figured out we would jointly be better off living separately. Over the course of a year this would amount to nearly €7,800 better off. This is huge. It is a 46% increase in our joint net income after paying rent. My personal income after rent would more than double. Startling numbers, and we would be foolish to ignore.

What might happen?

How do I make this decision? The government has decreed, by the policies they have in place, they want me to live alone, without the ability to walk, dependent on a carer who might see me for a few hours per week. A solitary existence. I will afford my car, until it stops working, and internet, so I will write. 

I have written this as I am sure I am not alone in this situation. Having a disability is hard enough, but when the state which should care for us, creates a situation where we are deliberately excluded from society, is doubly hard. Every day I have pain (with no medication to reduce it), every day my mobility gets worse, every day I struggle to get out of bed because of fatigue, every day I battle the daemon on depression, and now I must battle three different government department who are hiding behind policy, procedure and bureaucracy, meanwhile I get worse. There is something wrong with the system. Will it ever be fixed?