医療的ケア児者・重症児者向け事業所「うさぎのみみ」を作りたい

Help us provide care and support for children with Severe Motor and Intellectual Disability (SMID) and/or technology dependency as well as their family care givers. We are aiming to raise 5,000,000 Japanese yen (≒45,500 USD / 38,500 EUR）to partially cover the initial cost of 8,000,000 JPY to purchase a welfare vehicle, medical care equipment and rehabilitation/training tools.

 

 

"Leave No One Alone" Project
~Opening a day care center towards an inclusive society ~ 

Usagi-No-Mimi (meaning “rabbit’s ear” in Japanese) is the institute founded in 2020 committed to supporting residents living around Nishi-Tokyo City with Severe Motor and Intellectual Disability（SMID) and/or technology dependency such as intratracheal suction, respiratory management and tube feeding.
 
We are striving to realize a society where no one is left alone. Our mission is to provide them with a place to belong and opportunities to express their lives. 
 
Rie Honma, the chairman of Usagi-No-Mimi, has been nursing her son with SMID in home for some decades. In 1996 at his age of 6, he was diagnosed with a rare disease called ALD (Adrenoleukodystrophy) and a long-term medical care became necessary due to the development of the disease.  Contrary to the norm back then, Rie chose to raise him at home instead of relying on the hospital care.

 

The first ALD family association in Japan 

 

Back then, it was deemed impossible to care for a child with severe disabilities at home and hospital nurses were the only appropriate resources to rely upon.  Moreover, there was no reachable facility around. Local government often repeated that raising him at home was "unprecedented." 

 

After being turned down by local government and even health care workers, Rie desperately searched for the family association in vain. No one to consult with, nowhere to rely upon, no one to receive care from...

 

“If that’s the case, I will create the family association myself. There HAS to be a place where family care givers can regain themselves”

 

That was when Rie established the first ALD family association in Japan. In 2012 the association has grown into A-future, the NPO offering patients and their families the information for improving QOL, building awareness among government, medical and related industries, and building network with research institutions.

 

Creating “a place” where anyone can belong to

 

Through counseling over 1,000 patients and family care givers, we became keenly aware that most of the people with SMID and children with technology dependency are not provided with enough support. In many cases, they were also not accepted by the facilities to be taken care of and left isolated in the society.

 

To support them among local communities and provide them with a place to belong to, we decided to establish Usagi-No-Mimi along with our fellows who resonated with the project. 

 

Why new facility?

Why do the people with SMID, children with technology dependency and their family care givers feel “left out” in the local community?

 

For example, they face problems such as:

• The family care givers are forced to bear the burden when facility is not located within their life-area
• Even if there were facilities available, the family care givers are required to accompany the patients for medical care
• The local community cannot support nor understand because the family care givers were often disconnected from the community due to the home care. 

Once more, we asked ourselves "why not create one if not available?"

 

 

The project was kicked off. We believe it is necessary to provide them with their “place” to belong to in addressing these issues.

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Establishing Usagi-No-Mimi, the facility for people with SMID and children with technology dependency

 

In fall of 2021, we are establishing a day care center “ Usagi-No-Mimi” in Nishi-Tokyo, Japan.

 

We are going to provide 2 services: a "child development support" which takes care of pre-school children and supports child development, and "life nursing care" which provides daily life support for post-graduate (over 18 years old) during the daytime. 

 
↑Visions and plans mapped out in notebooks.

 

Opening Usagi-No-Mimi is not only the challenge for us but also for the local community. We are committed to bringing all our experiences and knowledge into creating "the place" which the people with SMID and children with technology dependency have longed for. 
 

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