Last April, I wrote a blog piece about social housing waitlists for people with disabilities based on the 2017 Social Housing Report. The 2018 Summary of Social Housing was released this week. Today’s blog piece is basically a copy of the one from April, but with the updated figures for 2018. May those who can affect positive change in this area listen.

The questions that remains are this:
Why are so many people with disabilities waiting for social housing?
Why are we leaving society’s most vulnerable to languish on these lists? 

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? Because 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 2018 published by Rebuilding Ireland in September 2018 using data compiled in June 2018*

In this report, disability is divided into 5 categories: Physical, Sensory, Mental Health, Other, and Intellectual. The total amount of households with disabilities shown waiting for suitable social housing is 5,095. The breakdown is as follows:

• Physical – 1,696
• Sensory – 361
• Mental Health – 1,522
• Other – 42
• Intellectual – 1,474

There is also an Exceptional Medical Needs category, not listed with Disability, and that figure is 1,063.

There are 4,037 people awaiting suitable social housing who have Enduring Physical, Sensory, Mental Health or Intellectual Issues.

12 Counties saw an increase in the amount of households on the disability social housing waitlists. Those counties are: Carlow, Donegal, Fingal, Kildare, Kilkenny, Laois, Limerick City/County, Longford, Meath, Monaghan, South Dublin and Westmeath.

There are 1,696 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.”

 

Last night, I took some time to browse through the latest Argos catalogue. Brendan Bjorn’s 14th birthday is coming up quickly on October 1st and there is something you should know about finding a suitable gift for a child such as my angel: It can bring up carefully concealed emotions, hidden at least since the last birthday or Christmas.

I usually enjoy daydreaming as I look through a catalogue – this is what I’d buy to make a cozy, homely sitting room; that is what I’d buy to have a well-equipped kitchen. But last night, as I began the often elusive search for the perfect gift for Brendan Bjorn, I found myself in tears.

He is turning 14 years old and I am still looking in the pre-school section of toys. 

You would think, after all these years on this journey with my precious son, I’d be well used to this search. I’ve long given up the thought of age-appropriate toys or games. The idea of soccer balls or a computer or a bicycle are long gone. But the past few years have been different. He’s lost his ability to extend his arms with intent to trigger a simple toy to make its music play or its lights entertain him. It has been nothing short of heartbreaking to watch him lose this ability. I don’t know if he’ll regain those abilities after his spinal fusion. I hope so. God how I hope so! 

I continued to turn the pages, searching for that one perfect toy. I didn’t find it. I searched, cried, and continued searching. He has enough stuffed toys. He has plenty of decorative lights to surround his bedside. He has his TV and DVDs that keep him entertained and happy.

The fact is not lost on me that celebrating his birthday is actually more for me and his brother Declan than it is for him. It’s the two of us who want to celebrate this milestone for Brendan, on his behalf…and so we will. There most likely won’t be any toys this year – a fact Declan and I simply have to understand and accept. It’s part of this unique and often challenging journey.

Sometimes, toys can bring tears.

I’ve decided instead to get a bunch of brightly coloured foil balloons to place at the foot of his medical bed. Brendan LOVES balloons! I’ll get a small cake, put candles on it and we’ll sing Happy Birthday to him. There will be loads of love and kisses…and undoubtedly, there will be some tears. 

Something happened this afternoon that put my world right again. All of the stress and worries of the day suddenly disappeared as I was beautifully reminded that, sitting on the couch next to me, was a child who loves me, and needs me, immeasurably.

As I read the words of his school assignment from today, I felt such a warmth
from deep within my soul rise up and out it came in the form of tears. 

I wish I could find the words to describe just how fiercely proud I am of my son, Declan. He is innately compassionate, loving, gentle, and altruistic. He is bright, inquisitive, and oh so humorous! He is a caretaker to his older brother, Brendan Bjorn, and at times, he is also there to comfort me with a hug or kind words of encouragement. He is living a life that is beyond his mere 10 years…a fact of which I must always be cognisant…and this journey brings unique challenges that he wouldn’t otherwise have if he wasn’t the sibling of a disabled brother who demands so much of my time and energy.  Declan needs me just as much as Brendan does and at times, even more so.

As I read the words of his school assignment from today, I felt such a warmth
from deep within my soul rise up and out it came in the form of tears.

 

I now share those words with you…

“My Superhero

My Superhero is my mom. My mom looks after me and my brother who is disabled and my brother Brendan cannot walk or talk which is a hard job for both of us. And my mom manages to keep all of us healthy which probably isn’t easy for my mom. And me and my mom have a lot in common. She likes to write books and I like to write books! So it may be hard but we all take care of each other.”

I’ve just spent the last hour crying. There is a good reason we carers are referred to as #carersincrisis, you know. Because we are in crisis, have no doubt. What sent me into a stream of tears? Well, upon doing my son Brendan’s cares this morning, I found that he has yet another skin breakdown. Please, keep reading so I can explain why I’m crying; why I’m so angry.

Today is 3 weeks until his tentatively scheduled spinal fusion…after waiting on the urgent list now for over 16 months.

The skin must be healed by then or they won’t be able to do the operation due to infection risk having an open wound.

Simon, do you understand the implications of this new development? Do you understand that if he had received the spinal fusion within the 4 month time frame, these skin breakdowns would not even be occuring because his body wouldn’t be continually crushing in upon itself from the ever-worsening scoliosis? And do you understand that if he declines to the point of being unfit for a spinal fusion, he will die a slow death betrayed by his own body? 

Do you understand that it feels like my heart is being torn out of my own body as I look at my precious first born child laying on his medical bed suffering? Do you?

Simon, my son turns 14 years old 2 weeks from today, on October 1st. I have given everything I have, and then some, to assure Brendan receives all the proper care, attention, love and everything else required for his complex medical care. So please hear me when I say this: His current skin breakdown, his current medical complications from the scoliosis, and his current suffering, are 100% not my fault.

They are the fault of a broken system that is leaving children like my son to decline until they are not even fit for the surgery they need. 

And that is nothing short of barbaric and inhumane.

In the next 3 weeks, I will use all of my skills and experience to see this latest skin breakdown healed in time. It isn’t in an easy spot to heal, especially considering there is also an area of vulnerable skin on the verge of again breaking down going from his right side all the way around to mid-back at his waist. This latest skin breakdown is on his left groin area where his leg meets his torso.

You see, Simon, because of the worsening scoliosis, his left leg is even more out of socket than it was on June 1, 2017 when he was first placed on the urgent waitlist for a spinal fusion. And, his lower ribs are pushing down on his pelvic bone. All of this causes an exaggerated deepening of creases.

Had Brendan’s spinal fusion happened last year as it should have, NONE of this would be happening now.

That’s worth repeating.

Had Brendan’s spinal fusion happened last year as it should have, NONE of this would be happening now.

I’ll end this blog piece asking you to truly empathise…put yourself in my shoes. Maybe even go home to your wife and read this blog piece to her. What if this was your precious first born child? What would you do? You’d never have let this happen. That’s what you’d do, I have no doubt.

So please, fix this, not just for my son, but for all of the children in Ireland who are suffering inhumanely. Now. 

 

In 30 days, if all goes according to plan, Brendan Bjorn will be admitted into hospital for a spinal fusion to take place the following day. In 30 days, I need to move into a suitable bungalow and prepare for this very risky, life changing, necessary operation for my first born son. And in that time, I need to finish raising funds for half the cost of said suitable bungalow.

I am a nervous wreck. Full stop.

There is no amount of meditation, medication or mindfulness to take away this stress.

Moving – It’s not like the average person moving house. Nope. To move Brendan means moving a small hospital and arranging all new care:

• Organise a removal company (and that expense)
• Call HSE to get Brendan’s medical bed relocated to the new house
• Call the shower trolley company to move that piece of equipment
• Transfer meds to a new pharmacy
• Find a new GP immediately
• Find a new Paediatrician immediately
• Get files transferred to above doctors asap
• Set up appointment with the new therapy team (via school? who?)
• Set up appointment with OT to do home evaluation of various needs
• Order a new overhead hoist system
• And Declan…in all of this…Declan and a new school for him and all that entails.
• Nevermind the pets. They’ll just come along for the mad ride.

So yeah, I’m a nervous wreck. 

I wish people could truly understand this journey, this life – even what just one day in our lives is like. It’s most often a struggle. Of course there are joys, and there is so much incredible love. Absolutely.

But inside of me, churning like a dark sea storm, are all my fears and worries. 

Brendan Bjorn is so fragile. He doesn’t have just scoliosis. Doesn’t have just cerebral palsy. The list of his medical issues is very long, and each one complicates the other, resulting in his desperate fragility:

• Severe brain damage from congenital CMV infection in utero
• Epilepsy, including Lennox-Gastaut Syndrome & ESES, sleeping and waking.
• Cerebral Palsy – severe, quadriplegia
• Scoliosis
• Osteoporosis
• Hip dysplasia
• PEG fed over 24 hours
• Lung disease
• Compromised immune system
• Unilateral deafness
• Chronic acid reflux
• High aspiration risk
• High pressure sore susceptibility and care
• Non verbal
• Sleep difficulties
• Sensory issues
• Unable to sit, roll, hold anything in his hands…or even scratch an itch.

So yeah, I’m a nervous wreck. 

30 days and so much to sort out. So much to do.
30 days and such a risky operation for my precious boy. I’m terrified.

Some days, I just wish someone would organise it all for me, or even just a part of it, and I could just show up with the boys. The weight of it all is taking its toll on my own health and wellbeing. And guess what? Knowing the stress is doing that to me stresses me out even more! It’s a catch-22.

Now, what about that meditation, medication and mindfulness….