Showing posts with label intellectual disability. Show all posts
Showing posts with label intellectual disability. Show all posts

Monday, March 4, 2013

Coping with a change in disability employment service provider

Even though it was Sunday yesterday, A-One did his Lumosity training.  He had been reminded by his father, and didn't protest that it was the weekend.  However, he hasn't yet done his training today.

He's still plateau'ing in his scores, so no change much yesterday.  No information processing or working memory games, but he gained another PB again for the cafe game (familiar faces). He's really strong on that one.

 
This morning we attended an appointment with a new disability employment service (DES) provider, specialising in intellectual and learning disability, the only one in Queensland.  We have the usual hoops to go through, as we did a couple of years ago, including a Job Capability Assessment (JCA) at Centrelink next Monday. 
 
While his previous DES provider was good too, I was keen to try this new one due to their specialty. This one had been recommended to me by someone at the workshop I attended at University of Queensland last year.
 
A-One: Do you think the other DES people will think badly of me for changing? I don't want them to think badly of me because they were OK.  Sometimes they'd give me a lift to the bus stop, or even drive me home.

Mum: I expect they may be disappointed in losing a client, and I don't want to leave on bad terms either.  We'll give them a courtesy call to thank them for all their help, and tell them that this new service specialises in disabilities like yours, so we'd like to try it.

I'm glad that A-One is tuning into interpersonal aspects. I've seen him make similar comments when contemplating changing guilds in WOW too.

Tuesday, February 12, 2013

Thank God it's Friday?

After Thursday's good day, Friday wasn't so flash.

Mum: OK A-One, time to get on to your brain training.

A-One: It's Friday!

Mum: And ...?



Later in the day he tried one game, then something locked up on his laptop and when he tried again it was after midnight and the site was unavailable.  On Sunday night when I asked him whether he had completed Friday's training, he hadn't.  However, he resumed on Monday.

He was given both information processing, working memory and flexibility games, resulting in scores similar to the day before.  He commented that he didn't like one of the games, a working memory game.

Mum: That means you're starting to work at a new level of capability - that's good.

Still, his overall BPI and percentile were marginally up again.  He's now performing overall at 25.6% of the population in his age range.

Saturday, December 8, 2012

The penguin's still cheating Mum

A-One continues to do his daily online brain training, but in this hectic pre-Christmas season, I have not been able to add any clocks or reading exercises for a couple of days.  By including the additional logical, rather than arithmetical, problem solving game, A-One's problem solving is finally advancing beyond the 2nd percentile to 4.5th percentile.   Today he was offered a new attention game, so his attention BPI took a slight dive, but I expect he'll recover that fairly soon.  Even so, he gained 4 PBs.

His speed is now at the 59th percentile! He's still grumbling about the 'cheating' penguin which, for the level he's playing at now, travels faster than he can make his penguin move.

Faster A-One!
 
I've been visiting some of the sites listed in SharpBrains' market report.  One in particular appears to be based in Lyon, France Scientific Brain Training Rehabilitation Program which describes very well which cognitive functions are exercised by each of their 28 exercises. I'm particularly interested in the Executive Function exercises which include strategy through logical reasoning, and planning through forming mental images of which steps to execute.


Wednesday, December 5, 2012

Global market report into digital health offerings

I have just received the latest newletter from SharpBrains, an inde­pen­dent mar­ket research and think tank track­ing health and pro­duc­tiv­ity appli­ca­tions of neu­ro­science.  In my assessment they are strongly backed by academics, and have a long list of professional articles listed on their blog, including one by Barbara Arrowsmith-Young on why she wrote The Woman Who Changed Her Brain.

They report on fully automated applications designed to assess, monitor and/ or enhance cognition and brain functioning.  Even though the report is available for purchase, they provide an overview which includes a list of the top vendors worldwide.  Some of the sites I'd discovered so far are listed:

  • Lumos Labs is listed in the top five
  • the Arrowsmith program is listed first on the list of Service-based Companies
  • CogMed is listed in the list of companies to watch in 2013/14
I find it encouraging that my research has identified some quality offerings. 

Of course, my challenge has always been which programs are the right ones for A-One's specific cognitive impairments, so that his efforts in brain training translate to real improvements in his quality of life.

Tuesday, December 4, 2012

Penguins, the postal service, and problem solving

A-One's keen to have his laptop repaired, but it doesn't translate to moving faster than he usually does, even though he received a call early yesterday morning with instructions for sending it off for repair.  Hopefully we'll get it to the post office today.

Yesterday I encouraged A-One to do one of the non-maths problem solving games in addition to the usual games that his online training offers him as part of his program.  However, he was his familiar resistant self so it didn't happen.

When he did do his training, he achieved a PB for flexibility and his overall BPI at 701 was his highest so far, but he had attained that a few days ago, then went for a dip.

Today was more exciting.  He gained 3 PBs and his highest BPI so far, 142% up on his starting score just a few weeks ago.  And he was singing along with some music while he did the games!


A-One: This game is unfair - the penguin is going faster than I can!

Mum: Yes, that's to challenge you to improve your speed.

At the end of the games presented to him, his percentiles were:

Speed: 56th
Memory, Attention and Flexibility: all now above 20th
Problem Solving: 0.9th

I prevailed again upon him to try a non-math problem solving game.

A-One: No, I'll do only the ones they give me.

Mum: You don't have to do only those. You can do others as well.  Look, click on Problem Solving and choose one of the two non-maths ones.

A-One:  Alright ... I'm thinking which one.

He chose the same one that he had the other day, discovering the rule for grouping shapes.  A couple of days ago when he first tried it he made comments about it being a silly game, however today he followed it quietly and achieved the next level.

We went back to see how that affected his BPI, and it had increased, and his problem solving had gone from 0.9 to 2.3rd percentile!  He was pretty pleased with that.

So I might have more success in convincing him to add that game to his daily routine.


No clocks or reading comprehension - his co-operation level hasn't been so high.

Off to the post office ...

Saturday, December 1, 2012

Phone calls, phone calls, phone calls

Finding the timing and pace of A-One's daily routine increasingly like nails on my internal blackboard, I took the opportunity to go out early for some Christmas shopping yesterday morning.  Once I got home, we had 3 activities to negotiate:
  1. Follow up on A-Ones's laptop repair
  2. Find out what to do when he's late with his employment reporting to Centrelink for his pension
  3. Online brain training
A-One was very keen on his laptop repair because he didn't want to be without it over Christmas.  I was privately pleased that he seemed to have worked out how long until Christmas, demonstrating some sense of managing his time, but my husband told me later that he had told A-One he'd better find out what's happening before businesses shut down for the holiday season.

We rehearsed what he needed to say, and he handled the first call with some prompting from me.  He was told to expect a call back on his mobile in 10 minutes. 

I then wanted to start the second activity because our experience of Centrelink is that you can be on the phone for 30 minutes or longer before you get to speak to someone, and if it wasn't completed before close of business, it'd have to carry over until Monday.  I rang the number on our landline, but A-One became agitated and reached across and closed the call.

A-One: We can't call Centrelink yet because I'm waiting for a call back!

Mum: Yes, that might happen, but we'll handle it.  There are two of us, and we can take a call each if it comes to that.

A-One: No, I don't want to do that.

Mum: We'll run out of time if we don't kick off some of these things at the same time.

I called Centrelink again. Because this call was just about resetting his password which he's done several times before, I told him that if his mobile rings while he's on the phone to Centrelink, I'll answer his mobile.

As it turned out, he was on the phone to Centrelink when his mobile rang.  He looked at me anxiously until I answered his mobile.  While I was taking instructions on that call, he was fine handling the other call without me.  I completed my call while he was still on the phone trying to think up a new password.

After completing his call, at my prompting he logged in and found out that he could still report his employment for the lapsed period.  He needed my help to work out the numbers to enter for income and number of hours.   When he logged off, I suggested he put a repeating appointment in his iPod as a reminder for his employment reporting, and this time he acquiesced.  (I had suggested it a fortnight ago, but he didn't want to know about it.)

He was very keen to know what happened in my phone call about his laptop, so I stepped him through what he needed to do.  Again, we rehearsed what he would say and listed the two things he needed from the call.  While making the call, he frequently looked at me for guidance on what to say, and after completing the call, checked with me about what he had just done.

The topics of backups arose.

A-One: If I lose all my data, that would be terrible.

Mum: Yes, that's what backups are for.

A-One: I've never done a backup; I didn't really know how to do it.

Mum: Sometimes it's worth finding out how to do something to avoid something worse. What do you think?

A-One: If I haven't lost all my data I'll do a backup as soon as I get my laptop back.

To assist him with his employment reporting, I wrote out a table showing his income for the number of days and hours he worked, which can vary.  I showed it to him, asking if he'd find it helpful to put that in his iPod too so that he can refer to it next time.  He decided it was, and proceeded to enter it. 
On completing it he checked with me if it was correct, so I told him how he could check it himself using the rate per hour. 

We also had a discussion about the start and finish days of the reporting period, so that he knew which days to count.  Initally he didn't understand that, but I could see his aha! moment when he gave a correct example of which days were in which reporting period.

There was still another phone call to make about his laptop, so we rehearsed that, and he again handled the call with prompting from me.

After observing where he needed help with these activities, I wrote out a 'recipe' for making phone calls, similar to the 'Baked Fish and Vegetables' step-by-step recipe that I'd previously written out for him and which he'd used successfully.   We can use it for the next phone call.


Later on he did his online brain training.  I was out of the room when he called out to me.

A-One: Hey mum!  I just got a PB for Raindrops!

(Raindrops is the mental arithmetic problem solving game.)

Mum: That's great!  How did the others go?

A-One: I got 3 PBs!

I was left wondering whether working through the arithmetic for his employment reporting constituted a 'warm-up' for his brain training.  Did he just need to get those neural pathways warmed up?

On an A-One scale, we accomplished a fair bit today.  When he is motivated, he becomes a delight to work with.

Thursday, November 29, 2012

No writing!

I woke A-One an hour earlier this morning and let him know the time for brain training.  I mentioned that I wanted him to try some alternative problem solving games, those that did not involve arithmetic, so that we could see how his problem solving goes when it's not about maths.

He brought up the login page at my request. After he worked through the games, grumbling that whoever wrote them is mentally challenged, we looked at his results. No PBs today; in fact he went down in 3 of the games.  However his speed is now over the 50th percentile at 52.6!  Overall he is at the 16.5th percentile.

When he completed the set games, I asked him to choose one of the non-maths problem solving games.  He had a choice between shapes and words, both of which required him to discern the hidden rule. He chose the shapes.

He read the rules of the game and saying it still didn't make sense he proceeded to play anyway.  The game requires the player to guess whether a shape fits the rule or not, so the first couple of tries is trail and error to discern the rule.  However when he got a 'X' on subsequent guesses, he consistently wanted to go back to the start.

Mum: You don't need to go back to the start each time you get one wrong.

A-One: I can't get any wrong.

Mum: It doesn't matter whether you get it wrong, because that's how you find out what the rule is.

A-One: No, I can't get any wrong.

Nevertheless, he seemed to be getting the hang of it, but wouldn't play it again.  I'll be very interested to see how he goes over the next week, as long as he's willing to add the game to his daily list.

We then took up the clocks exercise to a familiar refrain. 'This is a waste of time.  I have better things to do,' as he sat down at the table.  He was willing to try 2 clocks only, taking a while to work them out and making several errors.

Mum: Where did you get the 47 (minutes) from?

A-One: It's correct!  That's what I say it is!

Mum: Let's count them up.

A-One (sighing): OK. It's 52.

After the clocks, we took the first couple of paragraphs from the Inquirer section of last weekend's The Weekend Australian.

A-One: I'm only reading as far as I want to.

...

Mum: Where did you read to?

A-One (without waiting for me to read): There.  It's saying that the government and people are spending as if nothing bad is going to happen to the economy, and the Prime Minister is saying Australia has a good economy.

Mum: OK. Now I want you to write that down.

A-One, quite vociferously: No! No! No! I'm not going to write it down!

Mum: OK.  I'm just letting you know that writing it down in your own words will be one of our future exercises.
 
 
 
Well do I remember the challenges A-One felt at writing his assignments when at school.  I recall one of his teachers wrote one of his assignments while he dictated.  She knew he knew the work and could see that writing it down was a barrier to his succeeding. This year's neuropsychologist's report also recommended something like Dragon Dictate if he needed to write assignments.
 
However, that's the compensatory approach. The Arrowsmith approach is to exercise, exercise, exercise the weak cognitive function.  I just need to find the right level of challenge so that he doesn't refuse.


Monday, November 26, 2012

An online service and other links

Last night I was following up some of the organisations represented at Friday's workshop at UQ.  A partner of Synapse is The Developing Foundation based on Brisbane. It provides a link to neuro-developmental therapy programs which include online consultations and assessments.  The site refers to brain neuroplasticity and lists experience with developmental delay, global developmental delay, and PPD-NOS.  There appears to be a great deal of alignment between the online therapy programs and my objectives - do they also incorporate online brain training?

An Australian researcher into Autism, from Macquarie University in Sydney, blogs at Cracking the EnigmaMacquarie also hosts the ARC Centre of Excellence in Cognition and its Disorders (which doesn't list UQ as a collaborating or partner organisation.)  More leads to follow up.

Sunday, November 25, 2012

Games, games & bills

Over the weekend A-One completed his daily brain training with Lumosity.  His BPI continues to steadily increase, with improvements in speed, memory, attention, and flexibility, but his problem solving remains determinedly around the 2nd percentile. By Sunday, his speed was almost at the 40th percentile, although he may be plateauing for memory.

 
He was telling me about his progress with his latest game purchase, Halo 4.  Playing it on the X-Box because his laptop is still out of action, he was explaining that there are four levels: Basic, Standard, Heroic, and Legendary.  He decided to start at Legendary and is already up a couple of levels! (Although he says it takes longer to complete a game.) Not content with restricting himself to the X-Box, he is also using another computer to play the online game Runescape.


As an aside, he was asking about how some online payments work, and noticed his board payment in  the transaction statement for his bank account.  We took this opportunity to talk about some living costs, using a household bill as an example. I don't have much confidence that any of it registered, however we'll keep trying to share cost of living realities with him, hopefully to provide increased motivation for brain training.

Objectives: Best Practice AND Online

On Friday I attended an all-day workshop at the University of Queensland for Research Officers working in NGOs. Its purpose was to build capacity for research in the Human Services NGO sector, through building relationships between the University's researchers and the service providers/practitioners in the Human Services sector.

I don't work for an NGO, however my interest was to discover more about how research works in the Human Services sector, access to funding for research, and how that might be applied so that specific, targeted brain training becomes more accessible.

I found it a very worthwhile day, meeting people working in the NGO sector and researchers from UQ.  In particular I met people from Synapse, the not-for-profit association supporting people with acquired brain injury (ABI), and the Centre of Excellence for Behaviour Support from UQ (based in Ipswich).




The latter is funded jointly with the Queensland Government to improve the quality of life for adults with intellectual or cognitive disability and challenging behaviour.   This group has developed a framework for developing a comprehensive research agenda for people with intellectual disability and challenging behaviours.  I learnt that the focus of this group is on positive behaviour support, especially for people with severe intellectual and cognitive disability. It sounded like it would be a stretch for that group to turn its attention to those with mild cognitive impairment.  However, the framework for developing a comprehensive research agenda may be a good base from which to start in developing a research agenda for people with milder cognitive impairments.

Based on what I learnt from the workshop, I have drafted my own vision to improve the services available to people who fall between the cracks of 'normal' cognitive ability and severe cognitive disability. How many people are on the disability pension, possibly on supported wage, who with some effective intervention to overcome their cognitive impairments, could move into gainful employment and eventually off, or receive reduced, government support?

My two objectives are:

Objective 1: Evidence-based brain training exercises become incorporated into best practice treatment options for cognitive impairments

Objective 2: Evidence-based best practice cognitive assessments and correlated brain training exercises become more widely accessible through online delivery



I have begun developing the compelling 'why' for various stakeholders:
  • People with cogntive impairments
  • Carers
  • Human Services Providers/Practitioners
  • Health Care Practitioners/Specialists
  • Educational Services
  • Government - Political
  • Government - Administrative
  • Employers/Business
  • Community/Society

Also the How? and the Who?

I learnt that evaluation (efficacy) measures need to be determined collaboratively to incorporate user, practitioner, and researcher perspectives.

...

I wasn't at home on Friday, so no brain training happened for A-One, despite his insistence that I don't need to be there while he does it.