Medical Card withdrawn from 64 year old Alzheimers Patient..advice on appeal process?

Mairead1975

Hi
Im not sure this is the right category to seek advice or views on this topic, but here goes.....

My mother is 64 and was diagnosed with alzheimers 8 years ago. As you can imagine she has detiorated significantly over that time. She is still at home and being cared for by myself and my dad and carers who provide us with 30 hours care each week. For the last 6 years her care has been 24 hour, and in the last 6 months it has required 2 Carers due to manual handling constraints.

Mum is now in a vegetative state - she cannot speak, stand, toilet, eat, dress for herself.

For the last year, due to her exceptional circumstances we were granted a medical card. We received a letter on Friday to say that after 1 year, it is being taken off us at the end of October.

This means we will have to pay for medication up to €100, all doctors visits, incontinence pads, all lifting and manual handling equipment - basically everything which Im estimating to be circa €500 per month.

However the most crippling of things is that she will no longer be entitled to respite. I have battled for a year to get respite for mum and ourselves, which I managed to get for this week. I only got it cos I burst out crying on the phone to the HSE.

We are in no way affluent as a family. Mum was a primary school teacher and dad worked in a semi state in a mid-level role. They have not accounted for the fact that we have to pay €2,300 each month for carers and €10,000 to get our bathroom converted. I think with all our out-goings my parents are both living off 23,000.

We wwant to keep mum at home as long as possible. With respite and breaks we will have the chance to do this.

There is an appeal process, and I was just wondering if anyone had any guidance on how to approach it.

It;s an utter disgrace!

Mairead

GER12

Hi

Unfortunately I wouldnt say your story is unique.... many more people are losing the cards. While the exeptional need may be based on medical and hardship grounds - the card was not awarded as your mum was within the means - it was a discretionary award.... therefore, it could be argued they had the right to take it away. On the otherhand, if this is going to create undue hardship that would be the basis of an appeal.... and detail all outgoings.... that will have to incurred by your mum... the current costs included. I would also get in touch with the Alzheimer's Society of Ireland - they have an advocacy and rights service who may be able to direct you on how to handle it.

TestTransmission

Letter to your local TD?worked for someone I know

Narnia2010

Hi Mairead,

I was wondering what the outcome of the appeal was?

My Mother has recently diagnosed with Alzheimers recently at 58 years old and I have just applied for the medical card for her. She is slightly over the limits so I am not holding out much hope. She lives alone and I am an only child, married and am 5 months pregnant at the moment so really need to get some help for my Mam. I cannot believe that home care and the medical card should be linked in such a manner. I would be quite happy in contributing some money towards the cost of home help but this is not an option. The only other option that I have is private home help but it costs over €20 per hour.

Can you believe that my Mother paid taxes all her life is not entitled to any help, would she have been better off not working and claiming from the state earlier in life? There is something fundamentially wrong with the system and I will fight it all the way.

Lisa.

Mairead1975

Hi

Im really sorry to hear about your situation. My mother now has it 9 years and was diagosed slightly younger than your mum. It's young.
I dont have kids or a family so Im in a different position to you. You need to be careful of your own health.
First thing you need to do is get a power of attorney sorted while your mum is still ok to write and interpret what a solicitor is saying.
For homecare we use a company called homeinstead. By going through an agency, if someone doesnt show up, then they provide an alternative. Make sure your mum has house insurance, especially if you are getting a carer privately. I put an advert in the herald about a year ago and got 97 calls! I had to take it down after a day. When you go through an agency there is a tax-break which means that you will be exempt from 42% of the care bill. You have to go through an agency for this. You should have a district nurse who should help you around funding. You should be able to get support irrespective of income. This is "special" support and not given through standard processes.

Medical card - we appealled it 7 months ago and the appeal still hasnt been processed. In the appeal you HAVE to outline all your exspenses and future exspensives ....e.g Homecare, Respite (1500), Bathroom conversion, Car conversion, hospital bed, medication, nappies.....make sure EVERYTHING is on it....the more outgoings cancelling out income the more chance you will have. Spend alot of time appealing it if you get rejected. You're welcome to mail me if you need more of a steer.

Private home help ( i.e someone you source directly through adverts / contacts ) - standard pay is 12-14 per hour. If you get someone through an agency such as homeinstead or comfortkeepers, then it's €24 per hours.....but dont forget 42% of that is exempt. Your family will have to pool your resources.

It's an absolute disgrace I know.....but what can you do? You may have seen the programme on alzheimers recently on RTE. There was one girl who had to bring her mum into hospital in an ambulance, when there was nothing wrong with her. When they tried to discharge her, her daughter had to refuse to bring her mum home. It was heart breaking, but a patient is a hospitals responsibility. We've been told if it gets to a point where we cannot cope and mum ends up in hospital.....we should just leave her and walk away. The State is then obliged to look after her. I cant imagine ever doing this, but plenty of people do, to get access to affordable care

Hope this helps
M

Mairead1975

Thanks for your messages

We failed on the appeal process - I dont think the appeal letter could have been much better! I posted thread in April 2009 and the appeal rejection letter came through last month April 2011! I'm not complaining as it meant that we had a "temporary" medical card for 2 years. I am assuming it was a goodwill thing..........surely it doesnt take the public sector 2 years to process an appeal letter! We lose access to services, pads and respite. Mum is at the "final" stages according to our doctor. We probably need the support more than ever. I think it's aawful that someone who was a primary school teacher is not supported in her hour of need. Neither of my parents are remotely affluent!

Mairead

sophia25

Mairead I am so sorry to hear that. It's an absolute disgrace that a woman who worked and paid taxes is being treated so shoddily. Not much I can say to you but I wish the three of you well.

hdowney

the systems is a complete and utter disgrace. failing the people in society who need it most, at the time they need it most. i will be continuing to pray for your family at this time, and hope that your mothers final time (however long that is) is a peaceful for you all as possible.

Moonbeam

Is it covered under the long term illness scheme?

http://www.citizensinformation.ie/en/health/health_related_benefits_and_entitlements/long_term_illness_scheme.html

smelltheglove

Wow, that is a very touching story Mairead, I wish you and your family the best, hopefully you will eventually get the help you need. The whole system is a disgrace!

mrsbyrne

Moonbeam wrote: »

Is it covered under the long term illness scheme?

http://www.citizensinformation.ie/en/health/health_related_benefits_and_entitlements/long_term_illness_scheme.html

annoyingly and very unfortunately not, moonbeam:mad: most of the illnesses on the long-term illness list went down with the titanic, conveniently enough. no asthma, for example, despite Ireland being the asthma capital of the western world.:mad: