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  • #9588

    zeng
    Member

    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,

    Jiahui

  • #9589

    josh
    Member

    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.

    1. 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.
    2. 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.
    3. 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.
    4. 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.
    5. Mark is the expert so I’ll ask him to reply!

    Keep asking questions – we’re here for you!

  • #9592

    bookman
    Member

    Hello Jiahui,

    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!

     

  • #9593

    zeng
    Member

    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!

  • #9594

    zeng
    Member

    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!

  • #9595

    josh
    Member

    It is a pleasure to help!

    1. 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.
    2. 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.
    3. 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.

     

  • #9598

    zeng
    Member

    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!

  • #9599

    josh
    Member

    Hi again,

    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.

  • #9600

    zeng
    Member

    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?

  • #9601

    josh
    Member

    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!

    • #9603

      zeng
      Member

      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!

  • #9604

    josh
    Member

    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!

     

    • #9605

      zeng
      Member

      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!

  • #9686

    lorena99
    Member

    Hello! My name is Lorena and I’m currently living in the United States and I’m minoring in Japanese. I am also a wheelchair user, and I’m interested in studying abroad in Japan. I’m not too sure about a location just yet, but I would be fine anywhere as long as it’s accessible. At my university, it is usually recommended to study abroad in the country you’re studying the language from (ex. Japan and Japanese). I have already spoken to my academic advisor and she said she would look into seeing if there are any study abroad programs with wheelchair accessible schools. We had a program in Kyoto planned for this summer but it was canceled, but the school wasn’t wheelchair accessible so it wasn’t too much of a disappointment for me.

    I was reading the other comments above about finding a helper, and I was wondering which companies I should look into. I don’t have a helper here in the US and my mom is the one that usually helps me with daily activities, but due to personal reasons, she isn’t able to travel out of the country. The only things I need help with is getting out of bed, showering, getting dressed, cooking, and other daily tasks. Most of the questions I have about helpers have already been answered in previous posts, but I will let you guys know if other questions arise.

     

    Thank you in advance,

    Lorena :)

    • #9688

      bookman
      Member

      Hello Lorena,

      If I understand your post correctly, you’re looking for both a school recommendation and caregiving companies to facilitate your study abroad.

      As for the former, I can say from personal experience that the CIEE exchange program at Sophia University in Tokyo is a great option. CIEE is USA based and generally abides by ADA regulations. Furthermore, they have some experience dealing with foreign students with disabilities (myself!) and that will be a big plus for you. To put things in perspective, I was the first wheelchair user ever to study abroad in Japan according to both the US and Japanese governments…and while I don’t think their claim is 100% accurate, the fact that they are able to make that claim says something about the amount of programs, information, and accommodations available for foreign students. Disability inclusion aside, Sophia University is well-regarded in Japan as one of (if not the) top school for internationally-orientated research programs, and it has a large selection of English-language courses (in addition to Japanese, of course). Waseda University, Toyo University, and the University of Tokyo also have some options.

      As for caregiving companies, it really depends on where you end up studying, and even then scarcity means that most of us on this forum will not be able to give you concrete recommendations. Your best bet is to coordinate with your local city hall once you arrive in Japan, and they will be able to provide you with a list of companies. With that said, if you’re only planning to study abroad for a semester (or less), it will be rather tough to complete the process of applying for a disability passbook and you may be ineligible for caregiving services. It might be in your best interest to look for ways to bring someone with you from the United States or hire someone locally via a private contract. Just my 2c.

      Anyway, feel free to reply with any further questions that you might have. And I hope others will chime in if I’ve missed anything :)

       

       

    • #9691

      zeng
      Member

      Hi Lorena,

      Although I am just admitted by a school, and I will still be in my own country until this autumn, I have some information and I hope it can help you a little bit.

      For student exchange program, I guess other than the website of your own university, maybe you could also find some information on the website of your target school in Japan, since some program might be open for individual application? But its just some information comes from my classmate.

      And for the accessibility of campus, I see that some universities, including the Kyoto University and Tokyo University have Disability Support Office, so maybe we can have a look.

      Sorry if my information is not helpful. But I will go to Japan soon, so I am willing to give more information in the future.

      Good luck!

  • #10954

    lorena99
    Member

    Hello!

    I apologize for the very late response. I appreciate the answers from both of you. After some thought, I might wait a bit and possibly apply for those schools after completing the four years at my current university in the US. Since Mark mentioned it is more difficult to fill out the disability passbook and be eligible for a caregiver, I figured I would try applying to some universities instead. I’m currently a Sophomore, so I’m not sure if I have enough time to prepare. I also looked more into those universities mentioned above and noticed that the EJU was required for international students. Jiahui, if you see this, did you have to take any exams similar to that one?

    Thank you for all the help!

    Lorena.

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