Last week, I wrote on the first High Priority Area or HPA#1 – Quality Assurance for Autism Services. This was after I had kicked off this series on our nation’s first Autism Enabling Masterplan (AEM) with an intro a fortnight ago.
Today, I will continue with HPA#2 – Planning for Life. (For those interested, the full rendering for this second HPA can be found here.)
This is a tough one to be honest, because it’s all about our lives – C’s, his sibling’s and his parents’. From the time C’s ASD diagnosis was confirmed ’til kingdom comes!
What’s this about?
HPA #2 talks about how key stakeholders (caregivers) need to be well-equipped to implement “lifelong and person-centred case management” for persons on the spectrum.
While I would much prefer a ‘lighter’, less ‘corporate’ word like “care”, rather than “management”, HPA#2 certainly makes an important point here. It underscores an important principle guiding the AEM — any recommendation should cover a continuum of support needs and contributions for the unique person, who possesses his or her unique form of ASD, throughout his or her life.
HPA#2 also hits the right note with its opening line, which corroborates my earlier statement about how tough this is.
“For many families of children on the spectrum, receiving the news that their child has been diagnosed with autism, which is a lifelong developmental disability, is a difficult experience. Parents often report mixed feelings….the diagnosis brings with it more questions…” (AEM page 24)
If ever there was an understatement, this would be it!
Those were the days!
I remember well those minutes that seemed to stretch for hours as I waited for C to complete his autism assessment. Come to think of it, I remember the many anguish hours I’ve spent worrying over this boy in various hospital wards and treatment rooms, not to mention all the therapy sessions that usually followed.
Sometimes I’ll just be clearing work emails or taking calls while waiting. Anything really, just to keep myself distracted from worrying. But at other times, I just pace the floor or sit and wonder: what’s next for this boy? Even as I watch what the doctor, specialist, therapist, nurse or interventionist was doing with him. Or take copious notes of what follow-up actions my wife and I were to undertake before the next appointment descends.
In short, what will C’s life look like in the next five, ten, 15 or 20 years? What about ours?
Typically when these questions pop into my head I would feel the beginning tendrils of despair creep up on me. When that happens, I quickly try to stop and pull my anxious wandering mind back to the present. Because it just feels too overwhelming to ponder the what-ifs when clearly there’s no instant crystal ball answer to be found. In fact, it often feels like I’m watching a noose being slowly pulled tighter and tighter around my neck!
To look at the long expanse of time ahead just seems too much, so I’d rather not think too far but instead, focus on the here and now.
HPA#2 however, gently reminds me that I can’t stay in the present forever. At least not for the sake of C’s future well-being.
What is and isn’t available right now?
According to the AEM, families with newly ASD-diagnosed children at our country’s main hospital for kids can receive preliminary support from nurses resourced to handle autism queries. There are also follow-up “Next Steps” workshops that provide info to families on early intervention programmes.
Thereafter, however, it starts to get a bit hazy. Since no two ASD persons are exactly alike, it stands to reason there’s no one-size-fits-all “treatment”. Different families will have to start rummaging around for answers and the most appropriate intervention options available.
While info isn’t hard to find most of the time, knowledge of what best steps to take post diagnosis is anything but straightforward. And it gets harder as the child grows and develops from pre-school to post education when they near adulthood.
There are so many things to consider when choosing intervention: time, distance, which specific intervention to prioritise at the moment of decision (most ASD persons have two or more comorbidity behaviours ranging anywhere from sensory to social to attention deficit and more), and capacity of caregiver (usually either or both parents) to stay the course.
In truth, what caregivers like me desperately need is a coordinated system of planning across C’s lifespan.
As of now, there isn’t anything remotely close to that available.
Solution?
Under the HPA#2’s section on recommendations (pg 27), there was just one.
To introduce a lifelong case management (LCM) approach.
For that to happen, a “case manager” needs to be around long enough to provide continuity. The kind that journeys “with the individual on the spectrum and the family members throughout their lives.”
The first ten to 20 years would be ones where this case manager provides “support in forward planning and in identifying services to meet the needs of the individuals and their families.” Later as the ASD person “grows older, the case manager can also increasingly take on the role of a life coach, supporting them in areas such as decision-making and self-advocacy.”
In tandem with LCM is the importance of PCP or Person-centred Planning. This entails a process of life planning that takes into account the ASD person’s views, aspirations, strengths, preferences, areas of difficulty, and any support strategies/systems needed at “each stage of their lives.”
Are you feeling with me the weight upon the shoulders of such a case manager?!
And can there be any doubt as to who would best serve that role, apart from a parent or caregiver? I mean, this is for life, so who else apart from family’s going to stick around that long?!
Excuse me while I pause and take a deep breath.
It’s on me, my wife and his sibling!
The bottomline is clear: C’s lifelong care falls squarely on the shoulders of his parents and sibling.
That C should become independent enough one day to care for himself is certainly a distinct possibility. After all, his ASD is considered moderate. And having seen so many more cases of children and persons with severe ASD, I’m in danger of coming across as unkind if I were to make C’s case sound like the Mount Everest of special needs care.
Having said that however, the journey of helping C reach independence must still fall upon us, his family.
And so, we need to amass any and every kind of aid and support we can get our hands on at the various stages of C’s life and development. Things that HPA#2 recommends.
Like having an LCM, and putting in place a PCP.
LCM? Us, who else!
PCP? Not quite there yet because….well, let’s just say it’s a roller-coaster ride from day to day as our expectations and C’s often clash!
Like having a curated collection of IEPs (Individual Education Plans), ITPs (Individual Transition Plans) and Health Passports (which documents among other things, the person’s details, medical history, communication abilities, desires and wishes).
IEP? Checked (though it’s time to update that now).
But the rest? Unchecked as of now, as he’s still just ten years old.
We have time, I tell myself. We have time.
Right?
(Check in next Saturday when I unpack HPA#3 – Learning for Life)
Sobering. Clear. Responsible. And an obvious expression of grace. Thank you.