Understanding the housing needs of a severely disabled child with profound care needs

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Even though I feel I’ve written ad nauseum about my unsuccessful search for disability suitable housing, I realised this morning that many people still don’t “get it” – and that includes those who hold Ministerial positions within our government. What better time than now to try and explain, one more time, exactly what is involved and needed for a person that is severely disabled with profound care needs, such as my son Brendan Bjorn.

RENTING:

Securing a rental lease is not only a nearly impossible (or so far, totally impossible) task in today’s desperately competitive private rental market, but for families with a disabled child it amounts to merely putting a plaster on a hemorrhaging wound. Here’s why:

  • HAP – the majority of landlords don’t want to get involved with it.
  • HAP – it doesn’t cover the full cost of rent when considering the type and size of house required for a severely disabled person with profound care needs.
  • Renting is a short term solution to a long term need. Pardon me, a right.
  • Renting a house does not provide security. A vulnerable family such as mine could be given notice to vacate after a 12 month lease, thus back at the impossible task of trying to locate – and secure – a suitable rental house…yet again. Homelessness is highly likely in this scenario.
  • Renting someone else’s home does not allow the family to avail of any home modification grants. But even more importantly, it means the family cannot modify the home to safely and properly care for the disabled family member.

Here is just one example of what renting looks like – a shower chair sitting unbalanced in a bathtub; no safety rails; unable to use a hoist as the doorway is too narrow and the hoist legs cannot go under the tub. Dangerous, inhumane and risking the life of the disabled person as well as the health and safety of the carer who is forced to carry the disabled person in their arms across a wet floor, through doorways, from one room to the other:

brendan in bath chair edited

Here is what having a proper, life long home looks like – A wet room with ceiling hoist track system; shower trolley bed; ease of access from bedroom to wet room. Safe, respectful and best practice standards for both the disabled person and the carer:

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There are many, many other aspects to this situation that could be addressed, but for the sake of this article, I’ll just demonstrate with one more photo.

Subject: size of the house required. My son’s supplies and equipment literally take up one room all on their own – and I don’t mean his bedroom. I mean a separate room meant solely for supplies. Currently this is what my kitchen looks like:

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So, when one considers this, that’s a 3 bedroom house. But then there is my other son to consider. He must have his own bedroom because every time I go into Brendan in the middle of the night and have to turn the light on, it wakes Declan. At least once a night, every night. Now we’re talking about a 4 bedroom house being required. The cost of rent just went double what HAP would provide. (I’d refer you now back to the above list regarding why rent does not work for a family like mine)

If a family with a disabled child is fortunate enough to own their own home, there are grants for modifications. Even so, families have had to fundraise to cover full costs of modifications…but at least they have that opportunity.

If a family with a disabled child is fortunate enough to have a suitable home via county council social housing, the council can/will make the necessary modifications to meet the care requirements of the disabled family member.

But if a family with a disabled child is left to the private rental market, they are left at tremendous risk of homelessness. If not homelessness, they are more than likely forced to settle renting an unsuitable, unsafe house (as the photo above demonstrates).
No chance for required modifications.
No security of tenure.
No safety for either the disabled family member or the carer.

Is this really what we want for the most vulnerable members in our society?
I ask, but I’m nearly afraid to hear the answer from those who have the power.

Disability does not equal disposable

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This morning I started my day with the typical cup of coffee while perusing social media. What wasn’t typical, though, was to discover a comment left on one of my blogs addressing the difficulty in finding suitable housing when faced with the requirements that come along with severe disability and profound medical care needs.

“Would it not be possible to place Brendan in a hospice so you and your younger son could more easily find a home?”

Even now, as I re-read that question over and over, I somehow can’t fully wrap my mind around it. That initial smack in my face continues to sting even hours after the first reading. There are some things that people should never, ever, say to a parent of a child with a disability and/or a life-limiting condition. This is one of them. 

Over the past 13 years on this journey with my beautiful son Brendan Bjorn, I have heard it all…

You should put him in a home and get on with your dreams and your life. (He was only a year old at that stage)

If I knew I was going to have a baby like that, I would have aborted it. (FYI – I didn’t know)

When is he going to die?

He doesn’t have any quality of life so really it would be better for all of you if he passed away sooner rather than later.

Some of those above comments were made by family members. The impact is tenfold considering the source. When it comes from a stranger, you can nearly forgive and forget – but still, the sting of that initial smack lingers as it intertwines with the heartache that a parent like me carries, hidden in the deep recesses of our soul, daily.

Here’s the deal: Don’t say those things, ever. Don’t suggest that we place our disabled children anywhere else but home. If we want to, we will, but it is not anyone else’s place to suggest such a decision should be made. Our disabled children are our children. Get that? They are not something that we could – or would – readily dispose of like yesterday’s newspaper. Again, they are our children.

Disability does not equal disposable. 

This journey is hard enough having to fight the system and the government for equality, fairness, specially required exceptional services (ie: disability suitable housing), much needed respite care, medical appointments and operations to be done in a timely manner, and so very much more.

This journey is hard enough when fighting the system and the government, that we are made to feel like our children are unworthy – if not even disposable in their view – so the last thing we need is personal commentary from family, friends, or social media followers suggesting the same.

Disability does not equal disposable. 

 

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First come first serve vs. priority. What’s fair in the world of disability?

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There was a house for rent last week that would have worked for Brendan Bjorn’s needs. There was a 2nd sitting room on the ground floor which could have been his bedroom. And while the house was furnished (we need unfurnished because of all his medical equipment and supplies), it could have worked. Not ideal, but again, we definitely could have made it work. I learned in an email after the house had been let, that the owner and his wife had heard of our story and very kindly wished us the best in finding a home.

But – and this is the crux of this current piece – they felt the fair thing to do was to rent it on a first come, first serve basis.

Part of me can understand that train of thought. In many aspects of life, that philosophy works. When you go to get a coffee at the local shop, you wait your turn in the queue. When you enter the drive through at McDonald’s with your kids, it’s first come first serve. I get it. But when it comes to the special, and often complex, needs of the disabled, applying the first come, first serve ideal usually doesn’t work.

There is a reason the disabled parking spots are closest to the store.

When it comes to people who are disabled and have complex, medically fragile needs, there is a reason they are (or should be) placed at the very top of waiting lists, be it housing or medical – because their very life can depend on that service NOT being first come, first serve. Think triage in a hospital ED. Those most in need get seen to first. Why? Because THAT is fair.

Look, I certainly understand that life is not fair. I will, after all, one day lose my first born child. So, no, life is definitely not fair.

I challenge you, dear reader, to consider where in the sand that fairness line should be drawn.

Do we relinquish the idea that those most in need, those with medical fragility or disability, should be tended to first?

Do we take away the parking places closest to the store and just let people with disability park where they may despite the hardship it would undoubtedly cause?

And should we apply the first come, first serve mindset in housing too, be it rental or social housing?

A point to contemplate: If the answer to this last question is yes, it means the most vulnerable people in our society are being left to fight for a place to call home amongst the thousands of other people who are also searching for a home – but those people can actually fight amongst the crowd. THAT is the difference between equal and fair.

I ask you, what is most fair in this often tragically unfair world of ours?

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Life this week in one sentence

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Sometimes, it only takes one sentence to encapsulate one’s current life situation.

“It’s your fault that we are gonna be homeless.”

Sometimes, it only takes one sentence to tell of a child’s innocent worry.

“Will Santa find us?”

Sometimes, it only takes the start of the sentence.

“When we become homeless…”

Sometimes, it only takes one sentence to cut like a knife.

“If you were a good mammy we would have a home.”

Sometimes, it only takes one sentence to demonstrate the embarrassment of a 9 year old child.

“I told a friend at school that we are gonna be homeless and then he told the whole class out loud and they all stared at me!”

Sometimes, it only takes one sentence – never before said – to convey underlying heartbreak.

“I wish I had a brother – I mean one I can play with”

Sometimes, it only takes one sentence to express the inexpressible fear and turmoil in child.

“I don’t want to be alone tonight so can I please sleep with you?”

Sometimes, it only takes one sentence to shout out the life-changing, detrimental effects pending homelessness is causing.

“I hate life because no one cares what happens to us and if we end up living on the streets and die.”

And sometimes, just sometimes, it only takes one sentence to provide much needed reassurance.

“I promise you baby, I am doing everything I can possibly do to make sure we have a home for you and Brendan Bjorn, so don’t worry…don’t worry.”

I promise.

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Life can’t be wrapped up in a soundbite

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A few days ago, our country’s leader addressed the media about the homeless/housing crisis. For many of us, his words cut to the quick. Soundbites delivered with spin designed to create doubt among the public (ie: the voters).

This morning, I read the latest column by my favourite journalist, Gene Kerrigan. His latest piece, Pity the hapless, misunderstood Taoiseach, literally brought me to tears because he captured so much of what I feel. Read it, please. Toward the end of the article, Gene imagines our Taoiseach on Calvary with Christ and how – even about Christ – our Taoiseach would undoubtedly spin out those same soundbites, designed to create doubt amongst the people, about the rest of Christ’s story. You know, the parts that would make him “undeserving” of public support, sympathy, let alone worthy of receiving any help in his hour of need.

To Gene I say:
Nail on the head! Thank you for once again being a voice for those who cannot raise their’s loud enough to be heard.

To our Taoiseach I would like to say this:
About an hour ago I found myself in tears yet again. I was changing my 12 year old severely disabled and medically fragile son’s adult sized nappy. Runny stool was everywhere. As I attempted to clean him up, the runny stool got all over my dressing gown. In an attempt to finish the job at hand as quickly as possible so my son didn’t begin to have reflux and aspirate (as he does that if laying flat for even a few minutes), I leaned over his body at the wrong angle and my back went into spasm (I have degenerative disc disease now, on top of rheumatoid and osteoarthritis). Finally, he was cleaned up, despite the pain in my back, and I had to drop the soiled nappy onto the floor. It splattered everywhere because I hadn’t been able to seal it up while holding him in the position he needed to be in. That is the moment I began to cry. 

I’m not crying solely over runny stool. I’m crying because I don’t think you, as the leader of our country, care about people like me. I’m crying because Gene’s article brought home to me just how divisive your soundbites are when it comes to people on social welfare or in need of social housing – like me.

With all respect due, let me tell you a few things. As I have been on this earth longer than you, and as I tend to give motherly advice to those so much younger than I, please indulge me here.

  1. You can’t assume you know anyone’s full story. In all likelihood, no one will ever truly know anyone’s full story because no one can enter into another person’s soul to see what it is that drives them on, what it is that brings them to their knees, or what it is that fills their heart with love.
  2. You can’t suggest that everyone on social welfare or in need of social housing is “less than” you, because again, you don’t know their full story. Take me for instance: I worked full time while I put myself through undergraduate studies. Then I did it again, working full time while putting myself through graduate school to earn a Master’s degree. I used to have a profession, a business card, got up every morning (nice and early) and put on lovely clothes to head to my professional work. I was that kind of person you seem only to respect. But then my eldest son was born. You know, the one I mention above. His name is Brendan Bjorn, and for him, I had to leave behind all of those qualities of life and characteristics you praise. But if you saw me now – about to be homeless with 2 young boys, one of whom is severely disabled, me in a dressing gown still smelling of crap, well dare I say you wouldn’t think much of me. 
  3. Life. It’s not about getting ahead financially. In fact, money should only enter consideration when it comes to addressing our basic needs and a bit extra to make us comfortable. Once greed comes into play, the meaning of life gets lost. Trust me on this one.
  4. Death. It is never a good idea to use insulting, divisive soundbites in regard to anyone’s death. Ever. Death is called a loss for a reason. I’ve seen my share. Both of my parents are long dead. I’ve lost 5 pregnancies to miscarriage – one was a little girl with Down Syndrome. Her heart stopped in utero. And my beautiful son Brendan Bjorn…barring an early, unforeseen death on my part, I will one day experience his death as well. So please, don’t create more harm and hurt among the people with such insulting soundbites.
  5. Lastly, life can’t be wrapped up in a soundbite. Life is a complex and intricate experience that at the same time should be simple and whole. Life is not meant to be about who is better than, who is lesser than, who is deserving, who works hardest and gets up early or who is deemed unworthy. It simply is not about those things. Again, trust me on this one. I’ve lived a lot of life in my almost 52 years.

 

25 days to a milestone

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Tonight as I gave Brendan Bjorn his evening dose of no less than 7 different medications, I was chatting away to him as I typically do. “Christmas is only a bit over 3 months away, Brenny!” I said with anticipation of my favourite time of year. And, as he typically does when I chat to him, he smiled broadly while staring into my eyes, soaking it all in. I started thinking then – Christmas…already? One thought led to another and before you know it I realised I had nearly forgotten something no mother should ever forget:

It’s only 25 days until Brendan Bjorn turns 13!

Once I got past the dismay in myself forgetting this tremendously important milestone for my first born child, I began instead to think about what the day, October 1st, will mean. Well, for me, it will mean nothing short of a miracle.

If you had asked me this time last year, I would have said chances are Brendan wouldn’t see 13. His health was in that serious of a decline. But here we are, thankfully now able to count down in days to the special birthday when he will become a TEENAGER! This amazingly gentle, fragile child who has shown his indomitable spirit time and time again, is going to be a teenager. I am truly overcome with emotion as I sit here writing this in the quiet of the night.

When you are on this journey with a child who has such a precarious life-limiting condition, each day you have is one that you couldn’t count on having.

25 more days.

It is also 25 days until my little family find ourselves living somewhere other than where we currently are, although where we will be is completely unknown. We face homelessness and may very well end up having no choice but going to live in a hotel. Now there is a sentence I never thought I would write about myself. 

As I finished giving Brendan Bjorn his medications earlier tonight, my thoughts went from his birthday to where will we be for his birthday? Will he be safe? Will we be in a home? Or will we be in a hotel, him in a flat hotel bed without a specialised pressure relieving mattress, his health…his life…then put in serious jeopardy? My heart sank.

My joy at his milestone birthday disappeared as quickly as it came.

25 more days.

This journey with Brendan Bjorn has taught me that one day can completely change a person’s entire life. This journey has also taught me that you can never be sure what is going to happen from one day to the next.

So, with this journey’s learnings, I can only hope that these next 25 days will change our 3 lives for the better, not for the worse.

I can only hope that come Brendan’s milestone 13th birthday, we are safe, secure, and happily together in what will be our long-term family home.

Only 25 more days until October 1st. 

 

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