Four down. Two to go.
Surely this series I’ve been writing on the Autism Enabling Masterplan (AEM) and its six High Priority Areas (HPA) can’t get any worse. Right?
And yet, it just did. With this week’s HPA #5 — Residential Continuum.
Since blogging about my country’s Autism Enabling Masterplan (AEM) a month ago, I’ve come away feeling increasingly helpless. Not because help isn’t available, but rather that it’s needed at every stage of the rest of my son’s life.
Also, the feeling of helplessness is bolstered by the reality that much of what passes for help currently is still falling far too short of the real and present needs in the Autism Spectrum Disorder (ASD) community.
A major one being housing and shelter, as revealed by this 5th HPA.
One of the things my wife and I were in agreement on was that we wanted to raise our two boys to be close. Knowing the day will come when they will only have each other, as a reminder of the four-strong family we once were, it just seems like the right thing to do.
C’s special needs further cemented the importance and even urgency of this intent.
So we made sure that J always played with his brother, took care of him and loved him. That meant, teaching them both how to get along, resolving sibling squabbles over playtime activities or birthday and Christmas presents. Even the kind of bantering boys get into that end in pillow fights and scream fests.
I’m happy to report that our efforts haven’t gone to waste. These past two years with Covid have even helped to strengthen their relationship, given the increased amount of time spent at home.
Every moment they have together is a moment to add another “brick” to an important foundation — their lifelong sibling bond and relationship. One that needs to last their entire lifetimes, and not just their parents’.
For how long have my wife and I really? Another 30 over years, if prevailing mortality rates are anything to go by?
Reflections like this often make me pine for a larger family, where there are more people to spread the love (and get the help) when the need arises.
One of which is having a permanent roof over our heads.
Where will he live?
The fifth HPA is all about developing a continuum of residential options throughout the lives of those in the ASD community.
[Full rendering of this HPA can be found here]
The report urges quicker and more dedicated resources to make this happen soon. Not because there are no existing options. Rather, these are few and far between. They also tend to be too narrow in scope, catering only to a specific “type”, when we know that the community’s needs can fall anywhere on the spectrum.
The harsh reality is caregivers (usually parents) age, even as their special needs child or ward inches ever closer to adulthood.
With that comes the inevitable issues like employment (as discussed last week) and a roof over their heads. While parents living in owner-occupied properties can will their estates over to the child, the question lingers: can the child manage the place and live there independently his or her whole life?
And what of those with meagre means?
Most ASD folks come from small families, meaning they have at most one or two siblings. Aside from the usual reasons why many families are this way this century (plus the attending repercussions), with the ASD community, it’s also got a lot to do with the extra challenges of caregiving that forces parents to think twice about having more children.
My wife was light years ahead of me when she broached the idea of having a third child, back when I thought that two was more than enough. You see, C was already more than a handful during his first two years (being in and out of hospitals and various treatments). So my wife reckoned that another sibling might help ease the burden on J to care for him after my wife and I are six feet under.
We tried, but God had other plans. So the burden of care will fall squarely on J’s shoulders, and his significant other, should he decide to tie the knot one day.
It’s unlikely that our scenario is unique. Which is probably why the report advocates for a more community-based solution when it comes to providing a shelter and a home for persons with ASD.
No “one-size-fits-all”, yet they all need a home to “fit”!
The report stresses that there is no one-size-fits-all solution. There is no single prototype residence that meets the needs of every single person in the ASD community.
No surprise of course, given the wide spectrum of needs. It is ASD after all. As the saying goes, if you meet one person with ASD, you have only met one person with ASD.
Not the entire community.
So what we sorely need is a wide variety of housing options in the community. And we need to work with the ASD individual to “determine which option would best meet their needs.” (page 45 of report)
These could be specialized residential developments, multi-generational apartments, shared living arrangements, home nursing options, and assisted living facilities. But which one to pick will depend on sustainability, level of family support, financial strength, and the abilities and needs of the ASD person.
But it’s not just about the type of housing.
It must also depend on the living arrangements that allow for structured and predictable routines, adequate space and privacy, the presence of calm, “sensory” rooms, as well as internal and community facilities to cater to their daily needs.
But even more critical is the reality that C, and others like him, cannot exist apart from typical communities and experiences. They must stay plugged into the real world constantly, and vice versa.
It’s what the inclusive society I keep advocating for in this blog of mine ought to look like.
So what’s next?
For now, I can only see my C living with us in our home for as long as my wife and I are alive. That’s the community he is familiar with. It’s where home is for him.
But after reading HPA#5, I know I can’t just ignore the reality of what’s to become of him after we’re gone. And despite the siblings’ close relationship, I cannot assume it will remain so forever, especially when the time comes for his older brother to venture out on his own. And that could involve starting his own family.
When that time comes, would it be fair to expect J to shelter C? Or can C live independently on his own? I’m hopeful he can. I’m hopeful that by the time C hits adulthood, he will have a low level of support and daily living needs.
To that end, we must do what we can to train and equip him from now till that eventuality.
To be independent, able to take care of himself.
And always with a roof over his head.
(Please join me again next time when I unpack the final piece: HPA#6 – Planning for Life After Death)