Over 5,700 people are waiting for disability suitable social housing. Why?

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Because of my son, Brendan Bjorn, who is severely disabled with profound care needs, I am on the disability-modified housing wait list, but let me be clear right from the start of this piece, my family is NOT included in the statistics I am about to discuss. Why not? If a family is availing of HAP, as just one example, the Department of Housing does NOT include them in their housing figures because they are then considered to have their housing need met.

I start this piece with the above information because it is a tremendously important omission – and dare I question, intentional? 

To get a truly accurate picture of just how many people with disabilities are waiting for suitable, modified social housing, it is my opinion that the Department of Housing MUST include everyone who is currently deemed to have their housing needs met. Clearly, their needs are NOT met or they wouldn’t be seeking DISABILITY SUITABLE HOUSING from their county council. 

With that logical clarification, let me move on to the statistics. Again, keep in mind families like my own are NOT included in these figures because we are currently availing of HAP on the private rental market (albeit in a completely unsuitable, unsafe house that is over 100 years old in which I cannot even shower my 13 year old son).

*All statistics are taken from the Summary of Social Housing Assessments 2017, published by Rebuilding Ireland in December 2017 using data compiled in June 2017*

In this report, disability is divided into 5 categories: Physical, Sensory, Mental Health, Other, and Intellectual. The total amount of people with disabilities shown waiting for suitable social housing is 5,772. The breakdown is as follows:

  • Physical – 2,084
  • Sensory – 381
  • Mental Health – 1,691
  • Other – 45
  • Intellectual – 1,571

There is also an Exceptional Medical Needs category, not listed with Disability, and that figure is 1,564.

Almost 15% of households on the housing waiting list have special accommodation requirements. 

There are 4,326 people awaiting suitable social housing who have Enduring Physical, Sensory, Mental Health or Intellectual Issues.

There are 2,084 people with Physical Disability awaiting suitable, modified social housing. I repeat this number from above because their requirements are generally not met by the typical social housing unit which is a semi-detached house where the bedrooms and bathroom are all upstairs. Often, what is required is special housing such as modified bungalows which must be built or acquired by the county council. This is simply not happening, at least not anywhere near the rate required.

Again, at the risk of repeating myself, keep in mind that people who receive HAP, RAS, SHCEP, or people on the transfer housing lists are deemed to have their housing needs met so are not included in these figures

It leaves me to wonder…

What would the figures be if these people not included were actually included in this report?

What would the figures be if each county was to state how many are on their specific disability housing lists, regardless of if they avail of other schemes at the moment? (Note: not all councils consider anything other than physical disabilities for their disability housing list)

What does it take for the members of society with disabilities to be treated with the same level of equality, respect and dignity afforded to those who are not disabled?

At what point is our society going to realise that disability is the only minority group that anyone can join at anytime? And if people realised that fact, would it change the way people with disabilities are treated? I would like to think so. 

“The true measure of any society can be found
in how it treats its most vulnerable members.”

 

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I went for a walk: Let’s talk about mental health.

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Last week, I spent a couple of days in my pyjamas. I didn’t shower. I didn’t set foot outside the door. I shut off social media. I did just what I had to do to take care of myself and the boys. I cried. A lot. And I wondered if my boys would be better off without me. This is depression. This is being in an emotional rut where the walls of that deep-seated rut start to crumble in upon you. Here in Ireland, we are slowly beginning to talk about mental health and depression, but when it comes down to it – when a friend shows all the signs of depression or actually says aloud they need help – do we reach out a helping hand? 

Let’s just say, I think we have a long way to go in this regard.

We need to keep talking about it. And, we need to learn what to say in return.

Two friends contacted me to see if I was ok. No, frankly, I wasn’t. And I’m still trying to climb out of those crumbling walls. But I will, because I must, for the sake of the boys. Having said that, my physical health is also taking a toll on me with anxiety, stress and depression only adding into the mix. I’m often trembling. I’m in chronic pain with arthritis and degenerative discs in my back. I can’t sleep well. I have intermittent chest pains and increasing issues with the PSVT, diagnosed years ago, as it’s getting more frequent and noticeable. My rheumatoid arthritis is kicking up again, and with it, secondary restless leg syndrome that makes it hard to fall asleep at night. (I’m a mess, right?!)

I need to get both my physical and my mental health into shape. And quickly. 

Now that Brendan’s pressure sore has recently healed, I am going to see if he can tolerate attending school a couple of partial days a week. Truth be told, I need it more than he does. Summer is fast approaching and I won’t have any chance of getting out on my own for a walk once it’s here.

Today, though, I went for a walk.

Brendan Bjorn is away for 2 nights of respite at a centre, which, by the way, he will only be able to attend until the end of September. (He turns 14 on October 1st and HIQA doesn’t allow 14 year olds to be in respite with younger children. Seems ridiculous considering the fact my son can’t hold anything in his hand, can’t walk, can’t talk, can’t even scratch an itch. So anyway, that will be the end of that overnight respite.)

Back to the walk

I took Thor, my wonderful, furry companion, for a long walk along the river today. It was grey and overcast with a cool, soft breeze. My God did it feel great to be outside! Free. Exercising. Breathing crisp, fresh air. Being in nature. I miss it so very much! And as I walked along, thinking of everything happening in my life, I realised I need this as much as I want this. 

Sadly, it isn’t going to be able to happen all that often. There isn’t any in home respite nursing available (haven’t had any since last summer), and even if there was, the Loco Parentis clause is now restricting parents from leaving the nurse alone in their home during “respite” – so there is no true respite. *Feel free to contact your local TD about this issue, please.*

I wonder, how am I going to get this much needed time walking? 

The answer is, I probably won’t get it very often. The walk today left me wanting more. Much more. But like the taste of sweet forbidden fruit, it was just a tease…a cruel tease…and one which I know I won’t be able to taste again for some time to come. And that realisation makes those fragile walls crumble just ever so slightly again.

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10 years ago today and the 10 years since that day.

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It was 10 years ago, on 5th of April 2008, that Brendan Bjorn had his first seizure. He was 3 1/2 years old at the time. Such a little guy compared to the big boy he is today. I was 7 months pregnant with Declan at the time. I thought Brendan had been lucky and avoided epilepsy, despite his brain damage, because he’d made it that far without any seizures. I was very wrong.

That evening 10 years ago today is one I will never, ever forget. 

He was sitting in his special needs comfort chair after dinner, happy as he always was. Suddenly, he went into a full body, tonic-clonic seizure. He began vomiting out of his nose and mouth while convulsing violently. I was terrified. Absolutely terrified. I rang for an ambulance, which only took a few minutes to arrive, but which felt like a lifetime. I had been fired from my much loved job only a few months prior (because I was pregnant and unwed, working in a Catholic school). The pregnancy was full of complications including gestational diabetes and pre-eclampsia. But there I was, heavily pregnant, holding on to my precious boy while praying for him to hold on, unsure what to do for him. Unsure what the future would hold now.

The ambulance trip to the hospital was also one I will never forget. It would be the first time Brendan would be taken by ambulance to a hospital, but it certainly wouldn’t be his last time. The paramedic was working on Brendan, monitoring his O2 and heart rate, while also asking me if I was feeling ok physically. Honestly, I didn’t know. I was worried about both boys at that point.

That day would end hours later with Brendan being sent home with orders for me to just observe him and call the paediatrician if there were any more signs of seizure activity. Fortunately, I had the most amazing paediatrician who had given me her mobile number the first day she met me and Brendan. She answered her phone day or night, and in the weeks that followed, I rang her a number of times as his seizures continued – usually in the middle of the night. I had him sleeping with me so I could feel his body if he seized, and it was a good thing that I did, because otherwise I wouldn’t have known.

Fast forward 2 years to the day – 5 April 2010 – and Brendan Bjorn had another major seizure, stopped breathing, and turned blue. It would be the second time I had to call emergency services for him. (Today, I can’t count how many times, it’s been that many.) He was non-responsive. The paramedics had to suction his airway and bag him. It would be another trip in the ambulance, but this time it would be me and Declan, not even 2 years old, following behind in our van. And with that, Declan began his life seeing paramedics rush into our house, work on his brother, carry him out on a stretcher and take him away with lights and sirens going.

Today…10 years since his first seizure.

In that time, Brendan Bjorn has been diagnosed with 2 rare syndromes in epilepsy: Lennox-Gastaut Syndrome (LGS) and Electrical Status Epilepticus of Sleep (ESES) (he’s in it 75% while awake, as well, which is rare). He is also at high risk for SUDEP – Sudden Unexpected Death in Epilepsy. Yes, death.

His complex, intractable epilepsy is one of the likely ways I will end up losing my precious angel some day. And that fact sits very heavy in my mind and on my heart.

Emotionally speaking, I’m having a tremendously difficult night. It seems all of the struggles of late – mainly Brendan’s poor health with the pressure sore and our continued fight for the urgently needed fully suitable home – have now been made too much when thinking of today’s 10 year mark. Please, don’t get me wrong. I cherish every single day I am blessed to have Brendan Bjorn in our lives! I am so fortunate he has gifted me with being his mother the past 13 plus years, for he has taught me the most incredible of life’s lessons. But tonight…tonight I am worn out…my spirit exhausted. I am just so incredibly tired of having to fight for everything he needs. He deserves the world, but I can’t even give him a shower where we live. A simple shower, for God’s sake.

Tonight, my heart truly aches as I think on the last 10 years since that first seizure and everything he has been through and continues to go though.

My beautiful, gentle warrior…Brendan Bjorn.

 

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 Brendan Bjorn, 5 April 2010

Carers: The costs, the savings, and the unmet needs – from housing to home help.

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I’ve often thought that the way to get any Government to listen is to put it in terms they understand – MONEY. So, I will discuss here the costs – and the savings – to the Government when it comes to full time family carers such as myself.

May they actually listen…and then begin to make much needed reforms to help the carers of Ireland.

THE COST: 

The most a carer on Carer’s Allowance receives per year is €10,868. There are very important points to highlight regarding this payment:

  • Only 25% of Ireland’s unpaid carers are in receipt of Carer’s Allowance
  • To receive this allowance, the family carer must be working full time (35+ hours per week) providing care.
  • This is the only social welfare payment requiring full time work in order to receive it. Mind you, that work is in the home, unpaid, and precludes the carer from working outside the home and as such restricts them from contributing to a pension via employment.
  • Carer’s Allowance is means tested.
  • 1 in 10 people in Ireland is a family carer.
  • The State spends €11m less on homecare compared to 2008.

 

THE SAVINGS:

Family carers provide 16 million hours of unpaid caring each week in Ireland. Imagine if family carers were to stop providing those 16 million hours of unpaid caring each week in Ireland. What would be the consequence to the Government and our healthcare system?

  • Our healthcare system simply could not handle accommodating the care needs of tens of thousands of people currently being cared for at home by family carers if family carers were to choose not to provide, or were no longer able to provide, in home care. As such, family carers save the State billions each year and keep the healthcare system from totally collapsing.
  • The average daily nursing home care costs €167 vs. average daily in home care costs of €45.
  • Public nursing home care cost average €1,407 per week. Compare that to the weekly cost of a home care package which would range on average from €350 – €500, depending on the level of care required.
  • Inpatient, public, acute hospital care costs average €6,365 per week.
  • As I stated above, family carers provide 16 million hours of unpaid caring each week in Ireland.  If those services were purchased, rather than provided by unpaid carers, it would cost the State €10 billion per year – a figure that is 10 times what the Department of Social Protection pays to carers.
  • In other words, a family carer who receives the full Carer’s Allowance at €10,868 annually, provides €66,500 worth of services annually.
  • (note: many of us, like myself, only receive half-carer’s allowance, and 3/4 of carers do not receive Carer’s Allowance at all)

 

HOUSING: 

Many of us who have a family member with disability are stuck in unsuitable – and often dangerous – living situations. Our loved ones are often left without many basic care needs such as access to proper hygienic bathing equipment, safe methods of transferring, proper sleeping arrangements or systems, and much more. I know parents who sleep in the kitchen or dining area just to be near their child with disability. I know parents who receive no in home help or respite at all. I know parents who are trapped in homes that are a danger to not only them, but also to their disabled child.

  • Modification grants only apply if you are fortunate enough to own your own home, but as you remind yourself of the above financial figures, you can see why homeownership is but a dream for many carers like myself.
  • HAP is an utter failure for families with a disabled family member who require a specially modified home – the homes simply are not the type found in the private rental market which is in crisis, over-priced, overly-competitive and lacks any security of tenure.
  • Social housing finds families like mine waiting years, clawing up the waitlist against other families who are also in desperate need of specially modified housing (and what a cruel position to be forced into against each other, might I add).

County Councils are acquiring homes for social housing, but at what rate? And, when it comes to those of us who need those specially modified homes…most likely bungalows, an even harder find…how often are those type of homes being bought?

I look back to just 9 months ago when the Dublin CoCo purchased 19 luxury apartments in Marianella to be used in their social housing supply. The prices of each apartment ranged from €270,000 to a staggering €480,000. EACH. While I understand that housing prices in that area of the country are more than in the area I live in, I still have to question the rationale for such an expenditure.

And in turn, I have to wonder why I was told that the already modified, disability suitable bungalow for sale only 5 minutes away from where I currently live, is “over the allowed acquisition price” when it is barely over the €270,000 figure paid for a 2 bedroom apartment in Dublin. WHY? I must ask why, especially considering that families like mine require these modified homes for the safe care of our disabled loved ones.

Specially modified, fully suitable, homes should be considered
as necessary medical equipment for people
with severe disability and profound care needs. 

For the price of one 2-bedroom luxury apartment in south Dublin, the same funding amount could purchase a modified, forever home for a family like mine so that they can safely and humanely care for their loved one with disabilities.

To any Government officials who just might read this humble blog post, I ask you to remember that the tens of thousands of unpaid family carers across Ireland are indeed saving the State billions of euro each and every year.  We deserve far better, as do those beloved family members we have dedicated our lives to caring for, day in…day out…

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* Credit for all statistics regarding carers, Carer’s Allowance, and related figures, goes to Family Carers Ireland via their report entitled Economic Value of Care – Why Carers Count. Many thanks for allowing me to utilise their report for the writing of this article.

When your world hurts

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It’s been an exceptionally difficult week for me. While Brendan Bjorn’s pressure sore has thankfully healed, the area remains red with thin skin and the cavity of the sore remains. We have been out of the house 4 times now since his sore healed about 2 weeks ago after it had kept him bedridden for over 4 1/2 months. This morning, I see a spot of the skin that is once again about to open back up.

And my heart sinks. 

It can’t open back up…please…no. Declan has a follow-up haematology appointment next week in Dublin which will mean Brendan Bjorn must be in his wheelchair for at least 3 hours, and most likely that will end up being about 5 hours, if not more. This poses a real risk for the sore opening back up by the pressure of him sitting on it for so long.

And my heart fills with worry.

Brendan’s new battery operated, articulating shower trolley came last week. He won’t be able to use it until we move into a fully disability-suitable home. I just can’t carry him from one room to the other again. Last time I tried, I fell over backwards while he was in my arms, but fortunately his wheelchair caught me fall and he was unharmed. I gave him a bed bath yesterday and it just isn’t sufficient. I can’t rinse his beautiful thick hair fully, so it leaves him with residue that flakes off with his already dry scalp, despite the special shampoo. There is no sign of us getting the needed special housing Brendan requires. No sign, no word, no peace, no glimpse of security.

And my heart feels hopeless.

My youngest son is miserable, trapped in a house in an area he rightly feels afraid to even go for a walk in. He blames me, truth be told – and I accept my mistakes, my faults, and my failure to provide him a forever home in a good neighbourhood surrounded by friends. This week has been especially hard as he’s home on Easter break for 2 long weeks with boredom compounding the issues of isolation and unhappiness.

And my heart knows he deserves so much better than I can give.

I need to get in for a mammogram…still. It’s been put off for over a year now. As there still is no in-home respite (and with the loco parentis clause I wouldn’t be allowed to leave the nurse alone in the house anyway) it will just have to happen with Brendan in tow. I again have pain in one of my breasts. I mention this only because as full time carers, and I think especially as mothers, we tend to put our own health way down on the list of priorities, and we really should not do that! I am scared, yes, but can’t get lost in thoughts of what if. After all, there can’t be any what ifs when so much depends on you being healthy yourself.

And my heart ignores the fear of what could happen.

Tomorrow is Easter, a traditional day celebrating the resurrection of Christ. It is a day also traditionally filled with family and friends gatherings, laughter, happiness, and fun. And maybe a bit of church. The boys and I won’t be going to church. I need to keep Brendan’s sore from opening up before Declan’s medical appointment on Tuesday, so in bed he will stay until then. Anyway, I don’t believe in only showing up to church on Easter and Christmas. Hypocrisy at its finest, in my opinion. As for the family and friends gathering, it will be the 3 of us…me and my two precious sons…as always. Together, alone. I’ll make a special dinner which 2 of the 3 of us can eat. I’ll give Declan an Easter basket and likely raid half of the loot inside. And then, it will be a day like every other day.

Lucky for me, I have these 2 boys who save my heart from shattering into a million tiny pieces when my world hurts so much. They deserve the world without any of the hurt.

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Remembering my mother

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Today marks 28 years since my mother, Joan, passed away from cancer at age 60. It was only a few months after I turned 24. I missed her actual passing by just a few minutes – something I regretted for a long time, even though the doctor assured me it was for the best. I’m not sure if it was, but, that’s the way it was meant to happen, so be it.

I loved my mom. And I liked my mom. She had an innately caring and gentle soul. She was artistic. She was a romantic. She loved deeply. And, she was funny. In her last couple of years alive, we became friends as adults. We both realised she was dying, so we took the opportunity to leave nothing unsaid. It was probably the greatest lesson she taught me, and she taught me in her dying.

When I was a pre-teen, my Dad’s mother told me that my Mom wanted to abort me. Shocked, I didn’t believe it, but as my Dad didn’t deny it, I felt it must be true. It weighed heavy on me for years to come. One day, many years later, while Mom was washing up the dishes and we were chatting, I said I had something to ask her. As she was in her last year of life and we now had a very close relationship, I asked her if she had ever wanted to abort me. I told her what my Grandmother had said. She stopped washing the dishes and she looked me in the eye. “No. Never. I didn’t plan any of you, but I never wanted to abort you. Absolutely not.”

And with that, years of heaviness lifted.

Whether it was the truth or not doesn’t matter to me. It was her truth at the moment as I know she loved me deeply, and as I stood there, the tears fell. It was now my truth, too.

My Mom struggled with drinking (as did my Dad). They divorced when I was 8 years old, and by the time I was 9, I moved out of my Mom’s house and to my Dad’s in another city nearly 4 hours away. One of the most desperately painful memories I have to this day, is the day I moved away from her. She stood at the doorway at the top of the stairs to the house, crying. I looked out the car window, also crying, as my heart was ripped out. I didn’t want to leave her, but a child is easily manipulated by words of one parent against another. And so, I left, though my heart always remained, in part, with her. My Mom.

When she was diagnosed with cancer, I decided to move back up to my childhood hometown. We had another couple of years to be together, learning about each other, sharing stories, family history, and matters of the heart. We left nothing unsaid, nothing unasked. We held hands. We hugged. We said all the “I love you’s” that went unheard for far too long. 

The last time I saw her alive, laying there in her bed in the nursing home where she had just been transferred from the hospital in expectation of imminent passing, she thanked me. My Mom thanked me for caring for her. (The tears streaming down my face as I type this, missing her desperately…still) I wanted her to eat something, anything, and was trying to spoon feed her some ice cream. No, she wasn’t hungry. And she was no longer in pain. So I sat there holding her hand. She smiled gently at me and told me how much she loved me, her brilliant blue eyes just as brilliant, but tired, so very, very tired.

I’ve lit a candle for her this morning, as I have done every year since her passing. And as once again I can’t make it to a church (a fact she wouldn’t care about at all, truth be told), a candle at home will suffice. I wish she could have seen me become a mom, too. I wish she could have known my boys. But some things just aren’t meant to be. At least I know she’s watching over us, always.

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140 days to heal. Countless days left to be cautious.

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Today I can happily announce that Brendan Bjorn’s pressure sore has healed over! 140 very long, depressing, emotionally challenging days. But (and of course there is always a but to such things) now it means the very slow reintroduction of him spending time in his wheelchair. There is no manual, no guidebook, to tell me how long will be too long. It will be trial with hopefully no error.

Slow and steady wins the race, as they say. 

But (yes, again!) the skin where the pressure sore is located will always be about 25% weaker from here on out, so while the sore being healed over is certainly cause to be joyous, I realise it is a cautious joy that I must feel. Not only is that skin forever more fragile, but considering the pressure sore is located at the bony prominence just under his left buttocks cheek, it is going to be a real challenge to keep it from breaking open yet again every time he sits. So, my plan is to start with an hour at a time a couple of times a day and ever so slowly work up from there.

Tomorrow, Brendan Bjorn and I shall go for a stroll – his first one since moving to Dundalk. His first stroll in 140 days.

My soul is screaming for freedom after 140 days. I don’t think people have really understood the desperate isolation that being essentially trapped inside a house, caring, for months on end, has made me feel…and what it has done to my overall well-being. The chronic pain of degenerative discs in my lower back, coupled with the re-emergence of rheumatoid arthritis pain in most of my joints, and having no ability to even go for a walk to get much needed exercise, has been breaking me down. The impact on my mental health from often going day after day with not even speaking to another adult has, at times, caused me to doubt if life is even worth living. The loneliness, hopelessness and frustration over the past 140 days has simply been too much, and not just for me, but also for my youngest son, Declan.

140 days is just over 4 and a 1/2 months. Read that again. Over 4 and a 1/2 months.

Can you imagine? 

It is neither fair nor right that any person or family should be left in this way for so long with no help. We – as a society, a community, a culture, a people – must do better than this.

And those government officials and other professionals who have been entrusted to serve and guard the rights of the most vulnerable in our country, must clearly do better than what they have been doing so far.

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