Covid-19 has wreaked a heavy toll on people living alone and those who rely on hospital and home care. Home care rates are still not back to pre-pandemic levels and there is little indication as to when adequate supports will return. Additionally, cuts made to the disability sector during the last economic crash in 2008 have never recovered. Research indicates that over a three-month period more than 50% of people living with MS will fall, a similar stat to people over 85. This is all on top of the huge levels of instability that accompany an MS diagnosis as we navigate a world of MRI scans, medications, relapses, and employment insecurity.
Ireland is already the worst place in Western Europe to have a disability and we have a poor uptake of employment due to a lack of incentives that keep many disabled people in a dependency loop. I keep harping on about this, but Disability Allowance should not be means tested. It’s not enough to live on, yet if you work, the support is taken away incrementally down to nothing if you earn more than €350 a week. Up to 70% of the total costs associated with MS are not even routinely counted. These “hidden” costs are higher in Ireland than the rest of Europe, due in part to significantly lower levels of workforce participation, a higher likelihood of permanent workforce withdrawal, and higher levels of informal care needs. The hidden cost of having a largely invisible illness like MS is enormous. Our capabilities are so often muddied with doubt and stigmatising misconceptions.
Although it is incredible to have social welfare and support, there is a real problem with having to fight for the right to get that support. The hoops you jump through and the endless forms you sign are a massive deterrent. The burden is on us to prove we are sick enough to even be considered for assistance. It’s human nature to sing like the grasshopper but the reality is the likelihood of disability and illness increases with age so everybody in Ireland should have a vested interest in fool-proofing their futures. It’s not good enough to sustain the current reality for those of us living with chronic illnesses and disabilities.
The government budget is due to be announced on 27th September and to echo MS Ireland’s key asks, with some of my own, I want to see the following commitments:
- Scrapping of the means test for Disability Allowance; indirect costs such as hospital visits, childcare and carer fees amount to €23,247 per annum (MS Ireland, 2015), an amount which undoubtedly increases each year.
- Automatic medical cards and GP visit cards for people with MS; an MS Ireland study found that 84% of us visit our GP on average six times every year.
- Increase of €20 a week to Disability Allowance and Carers Allowance.
- At-home energy cost cover for those who rely on electric-run medical equipment.
- An increase of €600,000 in annual investment in the National MS Care Centre.
- Sustainable funding for national physiotherapy services for people with MS, and other neurological conditions totalling €880,000 per annum across all 9 CHOs.
- Provision of a further 100 neurology nurses to address unacceptable waiting periods, delays with diagnosis and treatment, with at least 20 to be provisioned in Budget 2023.
This year, Labour spokesperson for Health and Disability, Duncan Smith, said that a multi-annual, properly resourced, long-term approach is needed for the disability sector. I agree but why does this rallying rhetoric always come from beyond the inner sanctum? Activists and opposition parties shouting into a cavernous void only for our demands to be met with obfuscating promises and excuses by the powers that be. People with MS already have a lower standard of living than the average person in Ireland. At a time when we should be prioritised, the elderly and people with illnesses and disabilities are always hit the hardest in the cutbacks.