Deep breaths.
 |
Re-emerging 2014
Sculpture by Corina Duyn, in collection of
Dzogchen Beara Care Centre |
As you undoubtedly know, I have been fighting our Irish Health Care Service (HSE)
Disability and Social Care Services for two years. My continued quest has been to
obtain autonomy over my care.
Infuriatingly
silent!
Yes, I had some good news a few months ago, when I was finally awarded an
assessment from Disability Services. Until that time I was not being heard as
my illness is not listed as a disability, while at the same time I obviously
have a disability and receive support, and aids, from every other part of the
HSE.
So, the assessment
finally happened in October 2019. Twenty months after starting this journey in
earnest. I was awarded 2.5 hours of Personal Assistance Support per week. The
remainder of my good care package is still listed as Home Care. Trust me, there is a
fast difference. PA hours mean I can leave my home with support.
Twice a week I am
legally allowed to go for a walk with my PA support. I truly enjoy these short
escapes from my walls. I can relinquish being a hermit for short spells of time.
But.
But my energy, or
the weather, is not always in line with these scheduled escapes.
So, I asked the
HSE, repeatedly, if more of my Home Care Hours could be transferred to PA
hours.
Makes sense, doesn't
it?
Especially as it
is all Cost Neutral for the HSE: Same care agency, same carer, and same rate of
pay. (My main carer was given the PA
hours).
Changing Home Care
hours to PA hours would give me autonomy over my care, over my life.
Personal Assistance, according to Independent
Living Movement Ireland means: “... PA to
carry out tasks both inside and outside of the home, including personal care,
domestic duties, assisting in day-to-day tasks such as shopping, support in the
workplace or socialising.”
The HSE ignores
this request.
No acknowledgement
of my emails since December. Nothing. Not a word. It drives me bonkers.
They also have not
responded to the other issues raised during the Disability Services Assessment
(October): do I now qualify for respite care, can I access psychological care
(much needed after this nonsense of dealing with the HSE…), and access support
from a social worker? (I fell, or still fall,
between the cracks of the various ‘boxes’: I was/am not disabled (?), and not
over 65. There is no plan for the chronically ill people under 65 years of age.)
Nothing. Not a
word.
I find these
silences abusive.
Every time I tell someone about my struggles to have autonomy over my care,
over my life, I am in tears. Everyone seems baffled by the length I have to go
through to be heard. I am in tears while writing this.
The behavior of those in power borders
on being abusive. Their power they have over my life is abusive.
They don't seem to understand any of this.
I am uncomfortable
with breaking the HSE rules of leaving my home with my carers. I don't want to
get into trouble. I don't want my carers to get into trouble. My wonderful
carers who totally understand my situation and would do anything in their power
to give me the life I wish to live. I don't want to risk losing my much needed
care, by breaking these ridiculous rules.
So, I ask again
and again for clarification.
Situations I find myself in:
Wanting to cast my
vote during the General Election: Do I really have to break the HSE rules to
exercise my democratic right to vote? My PA hours are during the week. The
election was on a Saturday.
At times I really
need to be able to look at a different view. I spend 99% of the time at home.
Request for eligibility to respite has not been answered.
Friends kindly
agreed to take me away for a few nights. As an experiment I made it to
Youghal. Half hour from here. But, during these two days I had no access to
personal care, so am dependent on my kind friends to help with basic stuff. Not
easy. Not right. Friends should be friends, not act as carers.
Next week I will
be away, I hope ! for another few nights. But on this occasion I really need to
have access to care.
Surely I should have the right to avail of having a bath while there (a novelty), and not having to be
pulled out of it by my kind friend. I am there on my birthday. Wouldn't it be
lovely to be clean?
I love the opportunity to float in the pool. Something I
haven’t been able to do for years. As I have no idea if I am able for this, I
really would appreciate to having my PA there, to pull me out, to help me get dried off and dressed. Or probably to be helped into bed as I imagine it will take a lot
of energy… I feel confortable with my carer/PA as she has helped me with
personal care for over a year.
Surely I should not have to ask for this support from my friend?
For other short possible
escapes, I visited nearby Glencairn Abbey Guesthouse last week (will write
about that another day). This wonderful, loving, fully accessible location
could be a home from home, for self-funded respite days.
I just need to have my
care transferred. Simple, one might think…
Having access to more
PA hours would solve the problems. As I understand it PA hours is to support me inside
and outside my home, so surely I can ask for a PA to support me wherever I am? (Within
reason).
As there has yet
been no response from various people in the HSE if my care hours can be changed
to PA hours, I asked if my Home Care hours (which obviously includes personal
care) can be transferred for a few days to other locations: same distance for the
carer, who is more than happy to do this for me.
No response from
those in power in the HSE. The care agency didn't know. My Public Health Nurse totally
understands and supports me, but has no power to make these changes in my care.
She tried.
Do those in power not
realize the unnecessary stress they continue to cause? That having access to a carer/PA,
wherever I am (within reason) would make such a difference in my life? Do they
not understand how they in a way keep me a prisoner in my own home? Do they not
understand that it feels unreasonable to have to ask permission to leave one’s
home? Do they not understand that if one requires support at home, one needs it
too when escaping the house for a few days?
I feel that I am
not asking for the impossible.
All I am asking is
to have autonomy over my life.
All I am asking is to have the label of my care and be given the freedom to live the best life I
can. It is restricted enough as it is.
And if this is an
unreasonable question, please let me know why!
Until they respond
I have to take Very Deep Breaths to stay sane.
