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A MOTHER WITH a severely disabled child has said that she is at the end of her rope as she cannot find a suitable place to live for her family on the Housing Assistance Payment.
Tracy McGinnis (51) lives with her two sons Declan (9) and Brendan Bjorn (12) in a partially unfinished house in north Kildare.
Brendan Bjorn was born with Congenital cytomegalovirus, a condition he contracted while still in the womb. He is severely disabled and as a result requires round the clock care.
Brendan can’t walk or talk, has severe epilepsy, cerebral palsy, osteoporosis and a range of other health issues. He requires specialist equipment for his needs.
His level of care is considered palliative, and he is not expected to live past 18.
As a result, Tracy put her career as a family therapist on hold in order to care for him full-time.
“He can’t sit up on his own, can’t hold anything, he can’t itch, he can’t roll over – he’s complete physically disabled,” she told TheJournal.ie.
Tracy said that the house they are living in is highly unsuitable for Brendan.
His school is in Celbridge, which is about a 45 minute drive from where the family live.
“That’s just too long for him, he gets sick if we spend too long in the car,” said Tracy.
She said Brendan gets pressure sores – areas of damaged skin from staying in the one place for too long. As a result, travelling long distances in the car is very bad for him.
“It’s imperative that we move closer to Celbridge,” she said.
The family would also be closer to Tallaght as a result where Brendan’s paediatrician and specialist are located, and Crumlin where he has his orthopaedician.
As well as the distance, Tracy said that the private rental home in which her family are currently living is unsuitable for Brendan’s needs.
She moved in their with the boys just before Christmas as a result of relationship breakdown, but said that the family needed to find a new home.
It’s just not fit… long-term.
HAP
Tracy said she was recently accepted on Kildare County Council’s housing waiting list, but was told that it could take up to 15 years or longer before her family can get a home.
She has been approved to receive the Housing Assistance Payment (HAP) in order to help her secure a home, but has found it impossible to find a place within the price limits.
HAP is a form of social housing support that is paid to private landlords by local councils on behalf of tenants.
Tracy said she is permitted to a limit of €1050 per month under HAP, but she said that the kind of home she needs for Brendan (a bungalow that is wheelchair accessible) is almost impossible to find.
The suitable homes she does find are generally in the region of €2000 per month or more.
Tracy said she has been to numerous viewings where there are crowds of people to see a home. She has also been told by landlords that they won’t accept HAP (which is illegal to do).
HAP has come under strong opposition criticism in recent times, with TDs saying it is not suitable to meet people’s long -term housing needs.
“With the rental market as competitive as it is out there landlords can pick and choose and they’re thinking money,” she said.
“They’re going to choose a working couple who have a secure high paying income coming in as compared to someone who presents saying they have HAP.
“They don’t take the time listen to the fact that I am responsible person and I have a Master’s degree. I have had to take a career break for the last number of years so I can care for my son.
Especially as his condition has declined in the past couple of years. It’s not a sympathetic market, it’s a market based solely on money
Security
Tracy said that she wants security for her and her two sons, but that she feels she has been let down by the State. On top of the housing issue, Brendan is on a waiting list for a spinal fusion operation Tracy said he needs as a matter of urgency.
“In one corner I’m fighting to get a suitable safe secure long terms housing for us – in the other I’m fighting for the spinal fusion to happen sooner,” she said.
She is not sure if she will be able to remain in her current home for much longer, and does not know what will happen is she can’t find someplace to live.
She has appealed for help from her local representatives to help her find some means of securing a property that is suitable for her family.
Her nine-year-old son Declan has also been upset by the situation. Tracy also suffers from arthritis and lives with chronic pain every day. She battles with depression and is on antidepressants.
“I deal with anxiety issues and I deal with depression, I would love to be able to see a counsellor once in a while but I just can’t afford it,” she said.
I feel like I’m at the end of my rope.
You can read more about Tracy on her blog Transitioning Angels
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Great, total respect for carers, being a carer is so much more difficult than doing a 9-5 job or being a parent, you rarely or never get any thanks, more and more people have dementia and need someone to look after them and if you are the husband or wife you take on the responsibility, 24/7. I saw how my mam looked after my dad for years, I would try to come home for a few months to help but she did such a better job than I ever could have.
Good news for carers, but be weary if the application process. There might be a modern webpage, but behind it is the slowest, haphazard mess of a process that the public service could offer. I have some colleagues that lost their jobs in January, received confirmation that they are eligible for a medical card in March, and then in June received a notice that their application had “timed out” in the middle of discussions by snail mail. They’ve reapplied (with exact same documents) and still waiting. Shockingly poor.
@Gulliver Foyle: why would you apply online only to send the document required by snail mail? Surely uploading them would be quicker.
@neuromancer: Apparently, after you apply online, you have to forward bank records, mortgage details and signed agreement from a candidate doctor (if you had a previous GP who doesn’t do GP cards) by mail. In this case, they requested them, even though the applicant had already uploaded them. To make it more ridiculous, they downloaded the PDFs from the medicard website, printed them, and sent them back.
Never assume anything with the public service.
@Gulliver Foyle: you can take photos of them and send them via email.
Carers are a very deserving group I agree but this is a cynical vote-buying exercise by the government. If they really cared about carers, they’d give them full medical cards which would give access to a wide range of services such as counseling, medications, physio, dental care, public health nurse etc. GP cards just provide free GP access and they are cheap for the government to pay for. It is general practice that will pick up the slack on this one while Simon Harris poses for his photos and takes the plaudits. Don’t be fooled!
Being a carer is tough. Im a full time carer for.my husband who has severe dementia and psychosis. Other than a day center twice a week, i do it all alone. The carers allowance is pittance and isnt enough for all our needs. My husband gets state pension. After all our bills are paid, there is nothing left for anything extra including getting outside help. It doesnt exist for us. The government couldn’t care less for carers cos if they did, the carers allowance would be more. We as carers save the government a fortune by caring at home. I love my husband and thats why i do it
@Helen Kiely-O’Regan: Fair play Helen. It’s a huge amount of work and takes a lot of love and dedication to take that on
So now ,are the backbone of any country,according to Simon Harris minister for health,,well minister start paying them a proper amount of cash,for the work they do,they are the backbone all right,in some cases they are that tired after looking after their parents and are paid buttons,Its a 24 hour seven day week,no social life,so instead of praising them PAY THEM PROPER WAGES SO AS THEY HAVE SOMETHING FOR THEMSELVES
@James Mc Loughlin: My best friend is a carer and I can honestly say it’s a daily struggle for him. Hes a real stand up guy whos doing all he can for his mother while putting his own life on hold. Hes a young man and its a massive commitment. The 15 hour a week limit on outside work is also terrible on those who can do a bit extra if their service users are in day centres or sleeping.
If they’re registered caters, why do they have to apply?
While I think it’s great that those on Carers Benefit who have to give up work to care for a loved one will get a well deserved card, still no movement on actually paying carers fairly for their contributions to society and they work involved. Carers receive begrudged paltry compensation in return for long hours worked, near constant stress, isolation, and often compromising their own mental and phyical wellbeing. And many receive no compensation at all. The person who has to give up work for more than 2 years to care for a loved one but has another means of income exceeding a means test gets no weekly payment after the 2 year mark. They aren’t doing any less than the carer who meets the criteria but are expected to do it for free. That person will not receive this card.
@Carol Oates: it is absolutely disgusting the way this disgraceful government treats carers they should be ashamed of themselves but unfortunately they are too far up there own backside to be ashamed of the way they treat those great people
Nothing but respect for carers but if I ever knew I would get to the stage that I would not know who I was or what I was doing i would be all for euthanized, I mean you are just a shell at that stage whats the point?…..each to their own but I think folks should have the option.
Don’t worry. Be happy.
Are they going to be means tested
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