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)gmail.com

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. 

Three weeks

It has been a wonderful week at home since my last post. Briella is a sweet little newborn who mostly sleeps very well - although she can be a lazy eater. She's very easy going, and we've been out and about quite a bit. She snuggles into the Boba Wrap carrier (which I LOVE!) and sleeps almost the entire time we are out of the house. Now that she is three weeks old, she is more alert and enjoys observing whatever is going on around her.

Last Friday, December 13, we went back up to the hospital and Briella was formally discharged. We were given not one or two follow up appointments, but TEN of them. Such is life with a newborn with special needs! Because of the holidays, they don't start until after the new year - but January is going to be a very busy month for us!

On Friday, we saw our orthopedic doctor as well. The most immediate concern is Briella's feet. We plan to do some taping to see if that will help, and in the new year we will probably start casting. Both of these involve manipulating the feet into a more "neutral" position, and then using tape or casts to hold the feet in that position. This will be repeated weekly or so, and hopefully over the long term, the position of the feet will improve. 

When Maddy was discharged from NICU, it was also early December. This is the peak season for colds and flus, and as such, the doctors recommended that she have the vaccine for RSV. RSV is the main cause of pneumonia and bronchiolitis in young children, and children who are at risk (such as those who like Maddy and Briella have airway malformations and restricted lung capacities) are advised to have the vaccine. It's not a true vaccine which causes the body to create antibodies, but rather an infusion of the antibodies themselves. Every season, a child needs five shots and when Maddy was born, these shots would have been paid out of pocket - for a total cost of HKD$40,000!! (about $5,000USD/AUD). At the time, we couldn't justify the expense. Fortunately now, that cost is covered by the public health system here in Hong Kong (only for at-risk children) and so Briella will be able to get those injections for free and we can sleep a bit easier this flu-season! (particularly since this time last year, Maddy was hospitalised with bronchiolitis). 

Friday was a busy day - in addition to our time in the hospital, and also attending Lana's school Christmas concert, my parents and sister arrived in Hong Kong to spend the holidays with us! It has been wonderful seeing them again, and for them to meet little Briella. Every day I am amazed at how blessed we are that she is healthy and strong and HOME! 

Last week, we took Briella to have some professional photos done. I'll finish up this post with some of my favourites :)

Two weeks old

Today, Briella is two weeks old. It is crazy how fast the time has gone - but in other ways it seems as though she's been with us for far longer than that! We are loving having her at home, but it is exhausting! She is still learning to eat and so feeding her takes a lot of time and energy. On top of that, I'm pumping breastmilk for her as well, which also is demanding. I'd forgotten how much work a newborn is - I haven't had a newborn at home for over five years, since Maddy came home much later. It is all worth it though! 

Yesterday, we went up to the hospital again - I thought it was to be discharged, and for some reason I was expecting to get up there, talk to the doctors straight away and then leave within a couple of hours. It wasn't anything like that though! I arrived at 10am and was promptly told to wait outside of the ward since it was not visiting hours. The nurse told me that she would call me by 3pm to let me know "if Briella had to stay, if she was given more home leave, or if she would be discharged". Not what I was expecting! I posted on Facebook and had a few comments about how the nurse sounded nasty, and in some ways it seems that way - but it is just the difference in culture here. Sometimes it sucks - but she wasn't being cruel or rude, just following protocol and letting me know all possible outcomes. Regardless, it was very impersonal and lacked any kind of warmth that you might get in a Western hospital. 

To cut a long story short, after a few hours, Briella was given more home leave and so we have to go back up to the hospital on Friday to repeat the above experience. At least this time I know what to expect! I think if all is well, she will be discharged then. She is doing very well at home, but she is still not yet back up to her birth weight and I think that is the main thing they want to check again. The feeding issues can make it harder for little ones to put on weight - so we need to keep making sure she's drinking enough every day!

In other "news", Briella's ear started "bubbling" yesterday. Most kids with diastrophic dysplasia develop cysts on their ears within the first few weeks after birth. They stay swollen for a few weeks and then harden, forming "cauliflower ears". The cysts can be treated by a variety of different methods, including compression or draining the fluid. When Maddy was in NICU, hers were treated primarily through compression - you can see some of her head bands in this post here. For Maddy, it kind of worked - her cysts are mostly flat, but they do have a bit of scar tissue in both ears (you can see the end "result" in the header of this blog). For Maddy, however, the compression bandages ended up forming a pressure sore behind one of her ears, and also started misshaping her head, so the doctors decided to stop. We'll see what happens with Briella's ears. She was born with perfect ears so hopefully they don't scar too badly!

Here's a few phone-pics for you to enjoy:

 

Maddy's NICU file is kept on Briella's bed - the doctors and nurses had to review her case in preparation for Briella's birth. Briella owes Maddy big time - I'm positive this is the reason why Briella had a far "easier" time in NICU than Maddy did.

 Sisters

This is what happens when you have older sisters ;)

Together

They say that a picture says a thousand words. So here is how our afternoon went yesterday:

Briella was given home-leave on December 7th, my due date, at only 11 days old. We will go back to the hospital tomorrow morning to be formally discharged. Life with her at home is exhausting, but wonderful - just as I knew it would be :)

December 6

On December 6, 2010, we brought Maddy home from hospital.

On December 6, 2013, I went in to the hospital to find Briella without a feeding tube, and taking all of her feeds orally!

Since we got up quite late, I didn't have a chance to talk with the doctors today so I don't know when discharge will be, but I hope and expect it to be very soon. I'm confident that she is ready to come home and that we are ready for her to be at home :) I fed her an entire bottle tonight and she is a LOT easier to feed than Maddy was when Maddy was first discharged! 

It was really hard to leave Briella today - I think partly knowing that we are so close to the end - and also (as you can see from the pictures above), she was SO alert. She's generally such a sleepy baby - as many newborns are - and I don't know if I've seen her this alert and awake before. I just wanted to stay and chat and cuddle with her... 

I'm very eager to talk with the doctors tomorrow to hear what their plans for Briella are - hopefully we'll be home together very very soon!! 

Nine days

When Maddy was born, she spent her first 124 days in NICU. Four months and two days. She was discharged straight from NICU and never spent any time in the special care baby unit (SCBU - an area for babies with less serious needs who are closer to being discharged).

Yesterday, I got a call from the hospital - they "graduated" Briella from the NICU to SCBU. So in total, she only spent nine days in the NICU! 

The day Briella was born, the doctor said to Bernard "Don't expect things to be the same as they were for Maddy. You have to realise that Maddy was our first case of diastrophic dysplasia so we were still learning. But now, Briella is our SECOND case!" - cracked me up... with one child, we doubled their experience ;) 

Briella is still in the hospital and continually doing better and better with her oral feedings. Two days ago, she could take 30mL, yesterday she took 45mL at one feed, and then when I was there, I fed her 55mL before she spat it up all over both of us ;) The goal is that she can take up to 60mL for all 8 of her feeds - however they may let her go home if she is doing well enough. Maddy was only taking about 70% of her daily goal when she was discharged three years ago. With the improvements that I see, it is entirely possible that she will be home next week. 

I keep pinching myself to remind myself that it is real. After our experience with Maddy, I hadn't even imagined that things could go this smoothly. Apart from one frustration with one of the nurses, I haven't had any issues with anything at all this time around - compared with last time where it felt like a fight from about day three... 

My parents and sister will be coming over to Hong Kong for Christmas - they get here on December 13. I think the odds aren't bad that Briella will be home before they get here :) That will be nice...