All About Autism

[specialboymum]

Fizz:

specialboymum:

hi parents,


need your advice.
my son's case has been with KKH CDU since he was first diagnose with ASD. We did not go through any of the service they refer us to (all his therapies are at private practice) but we do go back there once a year for follow up and also get psychological assessment for school enrollment.

Now he is in primary 1, KKH has to discharge him since they only handle pre-school kids. The nurses at KKH told us that we could send him to Child Guidance Clinic at Institute of Mental Health. The nurses also added they could refer him to CDU but that doesn't mean they are transferring his case to CGU for continue follow up. . However, if I don't have any referral from them and if I need to go there in future.. I will need to go through the whole process of getting referral at poly clinic... do series of assessment to confirm he is ASD...

I'm a bit lost and don't know how to proceed from here. On one hand, I don't require any of the CGU service for the various kind of therapies, since I'm already making my own arrangement. However, at certain point of time, I may require some letters from the doctors or other recognized professionals to help him to get additional support at school for example exemption from oral exams or mother tongue (if it really get too difficult for him to handle).. where else can I go to get such help?

I just saw the PD this afternoon. I was asking her about the options after CDC KKH since he is going to P1 next year. She gave me the opetion of going private totally or being referred to CGC at Outram. I am still undecided. But I asked her for referral to CGC (meant for P1 to teens) due to cost and there is continuity (they will transfer his records there).

I guess you can still call up KKH to see if they can refer you there based on your prior records. My next appointment is June next year. I guess they will discharge him too.

Thanks. Think I will clarify again. It doesn't make sense to me that we need to start all over again i.e get referral letter from polyclinic, go through diagnose and be informed he is \"autistic\" again, when they could just transfer the file over to CGC

I'm also considering the private route, but is a registered psychologist's letter be sufficient for application for any exemption in future? Because the psychologist reports I got from KKH, are not valid without a medical doctor's signature.

[mashy]

I think for me, I will ask not to be discharged if that’s even possible. After all, he was just diagnosed 1 yr. How can they discharge him do quickly? Doesn’t discharging mean they are cured?

[Fizz]

mashy:

I think for me, I will ask not to be discharged if that's even possible. After all, he was just diagnosed 1 yr. How can they discharge him do quickly? Doesn't discharging mean they are cured?

Mashy
Discharging doesn't mean cure. In CDC, they are appointed to specialise in preschool kids. Anyone older will be under CGC. So in my case, although not discharged officially, they will refer him to CGC to continue his OT or ST. As he will still have a review with the PD in June, any issues after he goes P1, officially we can still call CDC back. It is like segregation of target patients within the public health sector, who will handle who.

[mashy]

But when he was first diagnosed, how come they didnt refer immediately to cgc? Since he was already going p1 this year. Instead they told me to go private therapies! If he was referred then, he could make use of the therapies at cgc? I have issues with the way they work. Totally not thinking for the patients.

[Fizz]

mashy:

But when he was first diagnosed, how come they didnt refer immediately to cgc? Since he was already going p1 this year. Instead they told me to go private therapies! If he was referred then, he could make use of the therapies at cgc? I have issues with the way they work. Totally not thinking for the patients.

Mashy
To be honest, I was pretty upset when the ST first broached the subject of looking a social skills group for my son privately. I felt that there was no accountability and continuity. She told me that apart from the SSG that he attended, there was no more of such groups. You are kind of left in the middle of nowhere. Yesterday, I told the PD outright that I did not feel that any direction was given. So I asked her the route for therapies that follow in P1. She stressed that EIP will stop once the child entered Primary school. This would be taken over by the AEDs and education counsellors, or/and private. As she focused mainly on my son's SSG, I asked her about OT and ST. I cannot afford to spend so much on OT, ST and SSG, all in private. Upon probing, then she told me the possibility of being referred to CGC.

But but but, when the nurse called me this morning to confirm the appointment at CGC, she said that CGC is only for behavioural management, no OT and ST. Till now, I have no indication what my son needs except SSG.

I feel that the public hospitals are lacking in such staff. So they are trying to direct those who can afford to private. But it's also true that private is faster. An appointment made with OT or ST in CDC will prolly see you 2 months later. Haizzz...KKH is a children's hospital. They should at least cater to 12 years...

[mashy]

Fizz:

mashy:

But when he was first diagnosed, how come they didnt refer immediately to cgc? Since he was already going p1 this year. Instead they told me to go private therapies! If he was referred then, he could make use of the therapies at cgc? I have issues with the way they work. Totally not thinking for the patients.

Mashy
To be honest, I was pretty upset when the ST first broached the subject of looking a social skills group for my son privately. I felt that there was no accountability and continuity. She told me that apart from the SSG that he attended, there was no more of such groups. You are kind of left in the middle of nowhere. Yesterday, I told the PD outright that I did not feel that any direction was given. So I asked her the route for therapies that follow in P1. She stressed that EIP will stop once the child entered Primary school. This would be taken over by the AEDs and education counsellors, or/and private. As she focused mainly on my son's SSG, I asked her about OT and ST. I cannot afford to spend so much on OT, ST and SSG, all in private. Upon probing, then she told me the possibility of being referred to CGC.

But but but, when the nurse called me this morning to confirm the appointment at CGC, she said that CGC is only for behavioural management, no OT and ST. Till now, I have no indication what my son needs except SSG.

I feel that the public hospitals are lacking in such staff. So they are trying to direct those who can afford to private. But it's also true that private is faster. An appointment made with OT or ST in CDC will prolly see you 2 months later. Haizzz...KKH is a children's hospital. They should at least cater to 12 years...

With regards to OT and ST, u can go kkh rehab. I'm puzzled why they never refer cases to rehab. They do OT And ST even for older kids. It's like altho they are in kkh, they are 2 different companies. Yes, I also think they lack reponsibility. They just give u an assessment and expect u to go figure out on your own. They don't even care if u are financially able to do it or not. I wonder if NUH CDU operates similarly. Anyway I'm happy with kkh rehab and I will be staying with them. Can't afford pte fees.

[Fizz]

Mashy


I will try CGC first. If my son can do without OT and ST with behavioural management, all the more better...less visits and less time consuming. If not, then I have to go through the whole referral process to get into KKH Rehab :slapshead:

[Double E]

Mashy

U are lucky that your boy is referred to KKH’s rehab and u are paying a subsidized rate. For many of us that are managed by KKH’s CDU, do not have access to the rehab. My boy was referred to the rehab only because our pte PD wrote to KKH to check his ears, so even when we go to the rehab, we pay pte rate. This is a serious gap that KKH needs to address. And comparing the therapists in rehab and HPB (referred by KKH CDU) , I find that the therapists in rehab are better and more experienced and they conduct useful courses for like "It takes two to Talk" for parents.

[specialboymum]

Gee… wonder why the information I got from KKH CDU different from all of you. The doctor and nurses at CDU said that therapies at KKH rehab is not for kids on the spectrum, therefore they placed me on the waiting list for CDU service… which in end I decided not to wait for it.


I find that CDU is understaffed and many are inexperienced. I think my son will be stuck and not progress if I totally rely on them to plan for his intervention program. Very often, they leave me feeling lost and don’t know how to proceed. Glad that we are at internet age, when I can google more knowledge and or exchange information from forum like this.

[mashy]

specialboymum:

Gee.. wonder why the information I got from KKH CDU different from all of you. The doctor and nurses at CDU said that therapies at KKH rehab is not for kids on the spectrum, therefore they placed me on the waiting list for CDU service.. which in end I decided not to wait for it.


I find that CDU is understaffed and many are inexperienced. I think my son will be stuck and not progress if I totally rely on them to plan for his intervention program. Very often, they leave me feeling lost and don't know how to proceed. Glad that we are at internet age, when I can google more knowledge and or exchange information from forum like this.

Then that's becoz they have never been in contact with them! The rehab centre have social skills group, handwriting classes, sch readiness Prog etc. those on the spectrum can also attend! In fact they are trying to find another kid to pair with my boy for social skills therapy. They have a gym for children doing OT and sound proof room for those who needed quietness. The therapies are ready and I've not heard of a waiting list existing in rehab unlike in CDU.