Thursday, January 30, 2014

Public services for children with disabilities in Hong Kong

Yesterday, I got an email from a friend of a friend whose son has just been diagnosed with cerebral palsy. Her main question was how to access the public services here. 

Now my main experience has been with the preschool age and so that is all that I really know about. I thought I'd write out my experience here so that it might help other parents of preschool children newly diagnosed with a disability here in Hong Kong. 

In Hong Kong, there are two very separate systems in the medical world - public and private. In the private system, things are very expensive but move along very quickly. In the public system, there are occasionally long waits for a particular service, but on the other side it is virtually free. In addition, many of the highly qualified specialists are in the public hospitals (which are university hospitals), so for us, we NEED to be in the public system (also we can't afford to do everything private as our insurance would reject just about everything as it is a congenital condition).

So if a parent here suspects that their child has special needs, what should they do? (for me, this step was different as my girls were diagnosed in utero and were "born into" the system pretty much!) - the best way into the public system for kids with developmental delays is through the MCHC. These clinics conduct developmental checks and can refer you to a specialist if delays are found. Often the specialist developmental checks are conducted at Duchess of Kent Children's hospital. If tests are to be run to confirm a diagnosis, sometimes it is better to see a private doctor for these tests if finances allow, so that a diagnosis can be made quickly. 

(Note: I've also found the Child Assessment Service online which may be helpful - they take referrals from medical practitioners and they have a team of therapists, medical social workers etc. I'm sure this would be another way into the system, however I have no experience with them, and they appear to only be on the Kowloon side of Hong Kong).

Once a disability is confirmed, a doctor at a public hospital can refer the child to the relevant therapies in a public hospital. The most common are physiotherapy (for gross motor skills) and occupational therapy (for fine motor skills and also oromotor training). In general, children here aren't referred to speech therapists in public hospitals here until they are closer to age 18-24 months. It is important to obtain these referrals early as the waiting times are long, and in addition if the child is put on the waiting list for other special services, they are ineligible to apply for therapy services in the hosptials - however if they are receiving therapy in the hospitals, they are eligible to continue to do so until a place is available in a special needs preschool placement. 

After public therapy is arranged, the next important step is to ensure that the doctor provides a referral to the medical social worker at the hospital. The social worker will be able to help you with two things - firstly, the application to government subsidised preschool rehabilitation services and secondly, the application for the disability allowance.

The preschool rehabilitation services are available to any child who needs two or more kinds of therapy. In some cases, I know of children who could have benefited from the services, however they did not apply until it was too late. There are multiple options that a parent needs to look into, including integrated kindergartens, residential care and early education training centres. More information is provided on the link above. Not every child will be eligible for every kind of service, and the medical social worker will help you to figure out what is best for your child. Of all the options, ONLY the early education training centre is available in English, and within that category, there are only two options: Watchdog or CDC. Watchdog is much cheaper than CDC, but has a longer waiting list. If you choose Watchdog, be sure that the medical social worker ONLY puts down Watchdog on the form, otherwise you almost definitely will get into CDC first (even if it is your second preference) and won't have the option of going to Watchdog at all. Both Watchdog and CDC have private programs that you can enter while you are on the waitlist for the government subsidised program if that is important to you. You can do this in addition to, or instead of, public therapy that is provided through the hospitals.

The disability allowance provided by the Hong Kong government is not highly significant (I believe it's around $1500 a month for regular disability allowance, or $3000 a month for "higher" disability allowance). It also provides a significant tax-break by claiming a "disabled dependent allowance". The value of this tax-break could be up to $22,400 per year, depending on your income. And let's face it, having a child with a disability is expensive so if we are eligible for a little assistance, every bit can help.

Another thing you may be interested in applying for is the disability card. Any doctor, public or private, should be able to assist you with this application, AFTER you have either received a disability allowance, or you are on the waiting list for the preschool rehabilitation services. Maddy has one, although to be honest we haven't used it much yet. The main thing we have used it for is to flash it at bus drivers who ask us to fold Maddy's stroller - it is much more convenient if we can park it in the wheelchair area of the bus, and I feel it is safer for her as well.

Finally, one thing I have not yet done, but will definitely look into if we ever get a car is to apply for a disabled person's parking permit, or parking certificate for drivers who carry people with mobility disabilities. I'm not sure what the difference is, or exactly how they work (there are some disabled parking spots available around the city, as well as free metered parking and cheaper parking elsewhere), but the forms are available from the transport department.

So in summary: if a child in Hong Kong is suspected to have a disability, the first step would be to look for a diagnosis either within or outside of the public health system. Secondly, get a developmental check up by the MCHC (or maybe CAS?) who hopefully will refer you to a specialist. From that specialist, get referrals to public therapy services, if you want that. After that, get a referral to the medical social worker who can assist you with applying for rehabilitation services and the disability allowance. The disability card and parking permit are "optional extras" but could be hugely beneficial if you have a heavy toddler with mobility issues.

Knowing what you are meant to do can help to speed things up - for example, it wasn't until Maddy was seven months old that she was put on the waiting list for the early education training centre, and it took multiple appointments with the social worker to figure it out. With Briella, I knew about the long wait and insisted on putting her on the waiting list as soon as I met with the social worker. She was added to the list when she was weeks old and likely will be able to access these services for a full year more than Maddy as a result. 

I'd love to hear other people's experiences, so please if you have anything to add to this, please let me know either by commenting below or emailing me at nicolejoy81(at)

Thursday, January 23, 2014

Briella - 8 weeks

I can't believe it has been five weeks since I last updated! If I could summarise the last five weeks, it has been extremely busy - but wonderful. 

Having Briella has been my easiest "newborn" period in many ways. When Lana was three days old, I came down with Bell's Palsy which lasted for the next 2-3 months and was very very difficult for me. I joked that I didn't have postnatal depression, but I did have "Bell's Palsy depression" and in retrospect, I probably did. With Maddy, we were dealing with NICU and in addition, were still learning so much about dwarfism and about her future that it was overwhelming at times. That time around, I had "NICU depression". With Briella, however, I was prepared for it to be rough at first - and my expectations were exceeded since she was home so quickly. Briella is my first child with whom I didn't spend much of the first few months in tears! And that feels really good...

We had a wonderful Christmas with my family - mostly just hung around at home and didn't do much of anything. Great company, good food - it was really nice. 

As soon as January started, my schedule became nuts. In addition to all the doctors appointments, I'm in the middle of applying for Briella's Australian citizenship and passport, as well as my Hong Kong permanent residency. In terms of medical appointments, between the whole family, we have around twenty appointments for January - up to three a day. Many days this month, I have been at the hospital for over three hours. 

Life with a newborn is always exhausting - night feedings are not easy on anyone. Although Briella is my third baby, she's only my second newborn, since Maddy was discharged already sleeping through the night. I'd forgotten how rough it can be! In addition, I think Briella has a bit of mild reflux and many days goes through periods of time where it is extremely hard to settle her. 

If you have just one baby, you can sleep all day if you want - or at least get a good sleep in a few times a week. With three, that is much harder. With three and a hectic schedule, it is near impossible. We are surviving though, even if I'm somewhat delirious at times. 

In terms of what is happening medically with Briella, we have seen many doctors and they are FAR more relaxed in general than they were with Maddy. Her breathing is stable, her feeding is improving, she's growing and getting stronger. With Maddy, there was a great deal of concern about flying. With Briella, we have already been cleared to fly and we are planning to go back at Easter. The doctors will see how she is closer to that date and decide whether or not we should prepare supplemental oxygen for the flight, but either way she is safe to fly. 

Many of our appointments with Briella currently are focused on treating her clubbed feet. Typical treatment involves putting both feet into casts which go up to the thigh - however since Briella's legs are so tiny, the casts will likely fall off quickly. Instead, we have been using physio tape to stretch her feet into a better position. While this is not as effective as casting, it will at least stay on her feet. In addition, I need to do daily stretching exercises on her feet. 

In the next few months, we will continue to see how her feet go with this course of treatment. As she grows, we may start casting her feet instead. In addition to casting, she may need to have a procedure to lengthen the archilles tendon which is extremely tight. 

I've started so many blog-posts in my head but never get a chance to sit down and put them all into a coherent post. I'm sure our lives will continue to be slightly crazy over the next few months but I hope to update when I can.