Living with Multiple Sclerosis (MS) is not easy at the best of times and as the disease progresses it robs us of our abilities and independence. Often we need to consider what help we need, in what sphere of our life we need it and what is available. I’ve written previously on my use of Assistive Technology and how it slowly crept into my life, today is about the use of assistance in the home is just another step along that road, albeit a very profound one.
The HSE definition of a Home Care Package is “a set of services provided by the HSE to help an older person to be cared for in their own home.”
The raison d’être for home care would be to enable people to live independent lives of their choosing for as long as possible. The realisation, admission, that one is no longer able to take care of oneself is massive. It’s not that long ago when family members looked after the ill and the elderly at home for as long possible. Now, the pace of modern life has changed what was once the norm. Families are smaller, lives are busier and fewer people have the time to do what was once another part of family life. Some people now see this care as being the Irish State’s responsibility.
My family moved back home (to Cork) a number of years ago and we were exceptionally fortunate that our needs coincided with opportunity. This was 25 years ago, a time when a house with a large garden was a good thing, when big steps at the front and up to the back doors were not an issue. As time moved on, so did my MS. Now the garden was too big, the steps were too high and the internal doors too narrow. It was time to make changes. We moved into my wife Jean’s family home, after we future-proofed for accessibility with wide doors and a wet room. The small garden and level access at the front door make life easier. Many people have a gardener to cut the grass or a housekeeper to help with the housework and many of the supermarkets now offer online shopping and home delivery. We manage with most of the mundane stuff but we do pay to get the grass cut, our family are very good at helping with the more difficult jobs around the house and our neighbours help with awkward stuff like the bins. One of the questions I have about the Irish home help and home care system is where does personal responsibility end and state responsibility begin?
I studied the submission by MS Ireland on upcoming changes to the Home Care system in Ireland. To me, it appears the system is inflexible; it doesn’t take into account what the applicant wants and imposes what it (The System) deems is needed. Often it seems that what is on offer is the minimum and nowhere near what is people require. The type of ‘help’ available, seems to be foisted upon the recipient rather than having a Care Plan agreed with the stakeholders. One example was that of a woman receiving one hour a week which supported her in the housework area. She was told that her single hour would now be used for personal hygiene. The best that I can say for the system is that it is free to Medical Card Holders.
The needs of a person living with MS are as complex and varied as the disease itself and any Home Care Package needs to be flexible to meet those changing needs. Barriers should not be imposed to suit the establishment; they should be removed to suit the recipient and foster independent living within the home and community.
Inform yourself of what is available and how to apply:
To read more from Declan on this issue, read here