Tuesday 28 January 2020

PA hours to regain a level of independence

After two years of pleading with HSE Disability Services I was finally awarded Personal Assistant (PA) support I can now leave my home with support, twice a week.

 Update on request for PA hours, written by Corina Duyn
ME Advocates Ireland (MEAI) member Corina Duyn in wheelchair at post office. First time out with PA

This! is what getting PA hours is all about, regaining dignity and independence. 

A short recap on a very long HSE journey, which I rather would not have made.

  • Six years since my first phonecalls and emails to the HSE and then Minster(s) of Health to ask for support to remain living at home independently with PA support.
  • Two years of regular phonecalls and emails, tears, bewilderment and utter frustration to at least 12 different people in the various HSE Disability and Social Care departments, 
  • After being taken into a carehome as I did not have sufficient care to keep me safely at home, an article in the Journal.ie , and being in hospital for several weeks, I now have a good 7 day HOME care package in place.
  • But I was still not allowed to leave my home with my carers. Support outside the home comes under PA support (Personal Assistant) only available to those with a disability. As ME is not on the list of approved disabilities at Waterford Disability Services I was not even entitled to get an assessment.
  • After many, many emails and numerous vague promises of 'we will look into this and get back to you...' I pointed out that even the Government states that Disability Services are NEEDS based, not diagnosis based. After three months of that session of emails, I finally managed to get an assessment. 20 months after starting this process in earnest.
  • I had a brilliant, heartfelt assessment in October 2019. I felt heard and understood.
  • It still took months and several emails to hear the outcome of the assessment. 

YES! I was awarded PAS... (Personal Assistant Services). But was told that there was no money...

This was nonsense as the plan was to change 2.5 homecare hours into PA hours. So no extra money would be required. 

Yet again I was denied support to leave my home.  But the assessor became aware of this and spoke up. Just before Christmas I heard the good news. Yes, the PA hours would be granted. It took another month before they started.

The Big Surprise

Usually PA hours are fulfilled by disability organisations like the IWA. But as it turned out, the hours stayed with the same care agency, hours given to my main carer, with the same rate of pay as her being a carer.

So nothing really changed. Other than that I now have 2.5 dedicated hours a week which are called PA hours, and I can legally escape my house with support.

Great! At last.

But isn’t it too bizarre for words to have to fight for two whole years to have those in power change the label of my care. Same agency, same carer, cost neutral...

The sad thing is that two years ago I was much more able to leave my home... 

ME Advocate Ireland (MEAI) member in wheelchair on the road
My PA seen in the shadow as she documents this momentous adventure.

Going outside!

Last week, going to the Post Office a little over 5 minutes away was my first outing with PA. We were out in total about twenty minutes. Having stopped off at my neighbour on the way. This very elderly lady had recently been discharged from hospital. I had not been able to see her. We talked at the door.

Yesterday evening we went 'around the block'. A ten minute adventure. 
I met one of my neighbours walking her dogs (and cat). I told her that I can now, sometimes, leave my house with my carers. 
She said in total bewilderment: "... You have to ask permission for this?"

The ridiculousness of this situation

Imagine: My carer is here. Part of the time she is my PA, where she can legally bring me outside the door. The rest of the time she is my carer, and cannot legally bring me outside the door: to go for a walk, to visit GP, to get some shopping, to go to the bank. Basic stuff. 

PA hours are by same agency, same carer and cost neutral. So, I have requested if All Care hours (or at least this carer's scheduled hours) could be labelled as PA. It would make the world of difference to me. (I will let you know when/if I get a response).

This would allow me to leave the house with PA when I am well enough to go, not just during the allotted time, and risk going over my limited energy levels, which can set me back. 

Another snag... I can not legally be in her car, so I can only have support to have PA walk with me through town. She is allowed to travel with me, but, the local link mini bus is not accessible, and there are no taxis in this town. I could book the wheelchair bus from Independent Living Services. This bus service is available at a limited basis, needs to be booked in advance and mostly only desitination is Dungarvan. (A biggish town about 25 minutes away).  It often means driving around  to pick up or drop of other disabled passengers. Traveling in the wheelchiar bus is uncomfrtable. It is too bumpy, so extremely painful.

The aftermath of my adventures

The getting dressed in coat, hat, scarf, gloves, shoes is in itself an activity for which I need full support. Coming home coat etc need to be peeled of me. I can barely move. After the post office adventure I spend the remainder of the day horizontal. I went to bed for the afternoon back in bed at 6 pm. The following day still very, very tired, but glad I had the opportunity to post a package to a dear friend in Holland (almost) by myself! 
Yesterday I was changed into my pj's as soon as we got back and was in bed at 7pm. But it is soo lovely to have felt the cold evening air, to have met a neighbour, petted her lovely dogs.  It felt like I had been for a long walk. An actual walk. 

ME Advocates Ireland (MEAI) member Corina Duyn recovering in recliner
a long recovery

Thank you

It has been a Very, Very long journey. A long winded joke, and nobody was laughing.
This really should not have happened in this way. 

There are still outstanding questions to be answered, but I am pleased to have had the long awaited assessment and outcome of PA support.

Thanks to those who finally made this happen. 

Also a Big Thank You all of you whom have followed and supported me throughout this journey.
I hope this victory will also help all others who find themselves in this ridiculous situation.

The HSE really need to join the dots and start listening to the people who have the knowledge of the cracks in the system. 

Hopefully our advocacy work with the HSE Working Group and the Government will help to bring change.