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

Standard

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:

Beach-house-photos-025-1360x908

 

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:

DJMzTDtXoAA8xAs

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.

One thought on “Understanding the housing needs of a severely disabled child with profound care needs

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s