- This topic has 13 replies, 3 voices, and was last updated 1 month ago by Zeng.
- January 25, 2021 at 8:43 pm #9588ZengParticipant
Hi Josh! Thank you for establishing this website. It’s very helpful and meaningful, especially because we can find answers from other people’s similar questions on the forum. And after browsing almost all the questions on this forum and reading other materials online, I still have some questions. Therefore, I would like to ask for advice from you and other friends.
I am Jiahui, a Chinese girl. I am a wheelchair user and I need a helper to take care of me. Several days before, I was admitted by a Master’s program of The University of Tokyo (Bunkyoku campus). Needless to say, I am eager to go, but I have some concerns:
1. I understand that we need to wait for several months before having our helper from the government, so there is a transitional period. My mum or my helper in China would like to help me, but they can just stay for a month at most with a tourist visa. Therefore, can I hire a helper at my own expenses? I read from other answers that some helper companies won’t like to do this. Do you know any companies that could provide helper for me?
2. It is a good news that a student can get a helper from the government, but are they reliable? I am worried that if a helper cannot come one day, I cannot even get up from my bed. So, could they make sure to stick to the service plan?
3. Since I don’t have any relatives in Japan, and I just have some friends, I need to be aware of the possible accidents or trouble that I might meet in the future. In your experience, have you met any unexpected situation that affects your life? Also, are there some examples that handicapped people (especially those who from foreign countries) meet troubles (like cannot get a helper)?
4. Due to my body situation and my rare disease, I guess I am entitled to get high level benefits. As for the helper time, if it is around 300 hours (as you said in the video), we have around 10 hours a day. Generally speaking, how do people plan this time? Do they break the time into several parts?
5. I see from the disability services office page of UTokyo’s website that they have some services for students and teachers. It says that what services we can get is based on our conditions. It also gives some example, from which I see that teachers can get personal assistant, but it is unknown for students. Do you know anything about the disability services in universities?
Thank you for your patience to read these questions. I’d be gratitude if I could get your suggestion. I am still trying my best to search for more information from other places. I hope you are good these days!
Thank you in advance,
JiahuiJanuary 25, 2021 at 10:00 pm #9589JoshKeymaster
Hi there Jiahui,
Mark, who (relatively) recently moved to Tokyo and is at University of Tokyo can give you the best answers, but I’ll do my best in the meantime.
- While it is possible to do this (I did 13 years ago), in general the care provider companies are thinly stretched and will want to cover their official users first. That being said, there is nothing wrong with reaching out to some companies to ask. Additionally, you may be able to hire students and train them to help.
- I won’t lie, I have been “forgotten” on a few occasions over the past 13-14 years but it is quite rare. Even if you are forgotten, most companies have an emergency phone number you can call and they will try to send someone ASAP.
- I have been hospitalized and even went in an ambulance once! In these situations, the staff at the care companies were very supportive. You will also likely get a care/case manager at the city hall who you can reach out to. I would suggest that when you select care providers, try to get at least one that is run by staff with disabilities as these companies tend to be supportive and help care for each other.
- The time you get depends on many factors, including which city you live in… so, please understand it is not a guarantee. You will have to make a “care plan” with your case worker from the city and then share that with your care providers. When you make this plan, it helps the city see what help you need and therefore how many helper hours you get. After the number of monthly hours are determined, you do not need to follow it strictly. Generally, on the 15th of each month, I make my care attendant schedule for the next month and tell the companies I use what hours etc I want. Some days I may use 5 hours, but then other days I may use 15 hours. Usually, I break it up depending on toilet breaks etc.
- Mark is the expert so I’ll ask him to reply!
Keep asking questions – we’re here for you!January 25, 2021 at 10:50 pm #9592bookmanParticipant
Congratulations on your admission to the University of Tokyo!
As Josh mentioned, I have been working at ‘Todai’ since the fall of 2018 as a historian of disability policy in Japanese and transnational contexts. If you’re interested, you can read more about me on my website: bookmanresearch.com.
Just to give you a little bit of background about myself: I am an American wheelchair user with a rare degenerative neuromuscular condition. My legs are completely paralyzed, and I have limited use of my arms. I also use a ventilator and take immunosuppressants for my heart transplant. Due to the severity of my condition, I have almost round the clock care.
Please keep in mind that the advice and answers I am going to give you are informed by my own experience and may not hold true for everyone. Still, I will do my best to provide you with the best information that I can.
1) As Josh mentioned, it may be possible to hire private caregiver(s), but most companies are likely to prioritize their registered clients. There are various reasons for this, but it is worth noting that Japan is suffering from a significant caregiving labor crisis at the moment, and it is often hard for disabled people to recruit and retain helpers.
2) I can say that my state-sponsored helpers have been very reliable when compared with the people I worked with in the United States.
3) Of course, you cannot predict everything that happens when you study abroad. I’ve actually written an entire article on this topic for Accessible Japan: “Accessing Academia: Strategies for (Self)Advocacy and Study Abroad with a Disability.”
4) The way you break down your care will be dependent on several factors. For instance, the amount of care hours you are afforded by the government, your daily habits, study schedule, and so forth.
5) Regarding disability services at the University of Tokyo, I would point you towards the university’s “Disability Services Office.” You can contact them about any specific inquiries that you might have!January 25, 2021 at 11:33 pm #9593ZengParticipant
I want to express my sincere gratitude to you two, Josh and Mark! When I was writing this letter, I was worried that I might bother you, so I tried my best to make my questions easy to read. And when I get the response from you (two experts) in such a short time, I am really excited and I really want to say: thank you very much!
After reading your response, I have more knowledge about the situation in Japan, and if you don’t mind, I would like to ask some further question:
1. What is the reason of the caregiving labor crisis? Is it a temporary condition because of the coronavirus, or is it a long-standing issue? Besides, if the situation is not so good, I should have some preparation for it. Since when I reach Tokyo, my mum can only help me a month. Can I contact with the companies in advance on the Internet? (And Josh’s advice is helpful too, I would try to contact with the students).
2. The good comment on helper’s service let me relieved. Thank you very much! Besides, will the helper for me be the same one? Or I will meet different people in different days?
3. According to Josh’s experience, we can break the care time depending on toilet breaks. Therefore, you mean I can… like need the helper from 9:10-9:30, and then from 11:30-12:00. And the care time doesn’t have to be continuous? By the way, if I have used up my care time, can I hire the helper for more time at my own expenses?
Thank you again, Josh! And thank you too, Mark! I will read your research carefully tomorrow. I hope I’ll have the opportunity to have a cup of coffee or tea (or anything you like) with you two in Tokyo!January 25, 2021 at 11:47 pm #9594ZengParticipant
I was so happy right now that I want to introduce myself.
I am a student of history too. I have got a master degree in China on medieval European history. And my focus in UTokyo will be the relations between America and Japan in the post-war period, especially their cultural relations.
Therefore, I believe I could learn a lot from your research!January 26, 2021 at 10:03 am #9595JoshKeymaster
It is a pleasure to help!
January 26, 2021 at 1:11 pm #9598ZengParticipant
- Mark can likely give you good context regarding the labor shortage, but it is mostly due to lower wages…
Yes, you can always start contacting the companies, but remember most companies will only speak Japanese.
- Generally, one company cannot do all the care for a person. For example, I use three different companies. The companies try to use as many different helpers as possible. If it is only one helper and that person gets sick or cannot come, then another helper cannot easily help you (since they are not trained). If you have many helpers trained to help you then even if one suddenly cannot come, another trained staff can. Every week I have maybe 10 different people come.
- Yes, I’ll often divide it like that. It does not need to be continuous, but I think a shift must be at least 1 hour long (then add on from there in 30 minute periods). Yes, if you go over, you can pay for extra time.
Thank you very much to your information, Josh!
1. OK. It seems that I need to practice hard for my Japanese from now on. By the way, are there some lists of the contact information of the helper companies?
2. OK. It seems more reasonable than just cooperate with single helper!
3. All right, I got it. Besides, what is the service time available for us, from 8:00-22:00? And what about the night? (Sometimes I need to go bathroom during the night… ) Generally speaking, how much should people pay for the helper service for about 300 hours a month, before partly being covered by the government?
Thanks again for your patience!January 26, 2021 at 2:02 pm #9599JoshKeymaster
There isn’t really a big list, but the city you chose to live in will have a list of registered companies you can contact. You can reach out to the city you are thinking about living in and they will send you the list.
In theory, any time is fine. My helpers come at 6:00 and the last one leaves at 23:30. However, if you have an emergency, you can call for help in the middle of the night.January 26, 2021 at 3:57 pm #9600ZengParticipant
Thank you so much, Josh!
I guess I will live near my campus, so I need to contact with Bunkyo-ku government, right?
It seems that the time is flexible, which is a good news. By the way, when I have emergency, approximately how long will they take to reach my house?January 26, 2021 at 4:27 pm #9601JoshKeymaster
If that is where you want to live. You may want to live in another area and commute. That is up to you.
There is no guarantee about the length of time to arrive. There is likely not a staff at the office to go right away, but instead one of the staff may have a company mobile phone. You call the number and tell them you need help and either they will come, or they will phone your helpers one by one and ask them to go. Once they find someone, that person will need to get dressed and then go to your house. So, it may take some time!January 27, 2021 at 12:47 pm #9603ZengParticipant
Thank you for giving me such a valuable information! I got it.
So now, with the advice from you and Mark, I will start contacting with UTokyo, finding accommodation and helper.
Thank you so much! Hope we can meet at Tokyo!
1 user thanked author for this post.January 27, 2021 at 12:53 pm #9604JoshKeymaster
A pleasure to help!
Feel free to ask as many questions as you like :) (Though it may be good to break them up into different topics for new questions.)
Also, please join my other website about accessible travel around the world: http://www.tabifolk.com. Maybe you can share information about where you live too!January 27, 2021 at 1:28 pm #9605ZengParticipant
Thank you! I get the point!
Yes, I am a local in Guangzhou, and I have been in Beijing to study. So I can share some of my experience in these two cities!
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