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The 3rd Asia-Pacific CBR Congress

Howawa Day Care Center for Children (Musou, Social Welfare Corporation)

(Setagaya Ward, Tokyo)

Key Words: Special Needs, Children with Severe Disabilities Needing Medical Care, Collaboration of Medical Care and Welfare

The creation of a system that enables anyone with a disability, regardless of severity, to live all his life in the community– this is our corporate mission. To carry out this mission, we have established a system whereby doctors who can provide medical care at home and nurses belonging to home-visit nursing stations can collaborate with each other in providing developmental medical care at Howawa, a day care center for sick children. Here, necessary support is given to the children according to their specific needs and age through the collaborative efforts of medical care and welfare to prevent the future deterioration of their quality of life.

◆ Background

In reality there is no perfect social system that allows people to live happily, to be cared for, and to die with dignity, but special medical care and support is vital for sick children with disabilities – the kind of support which enables them to live a fulfilled life as they grow according to their stage of development, no matter how severe their sickness or disabilities may be.

◆ Service Outline

In collaboration with pediatricians who provide home medical care and with home-visit nursing stations, Howawa was established in Sumida Ward and Setagaya Ward of Tokyo for children with severe disabilities requiring special medical attention. Without such collaboration, and by depending only on a welfare organization, round-the-clock services would be impossible to render. Our day care centers are rented and renovated homes, just like in other similar projects of Musou in Handa City, Aichi Prefecture.

Photograph 1

Basic Data

●Coverage Area: Special wards in Tokyo (major urban areas)

●Population: About 9 million in the 23 wards of Tokyo, including some 1,500 children who need special medical care

●Issues:Shortage of places where children with special medical needs can stay during the day; and isolation and exhaustion of the families with such children

■ Year of Establishment

Azumabashi of Sumida Ward was opened in January 2013, and another one in Seta of Setagaya Ward was opened in June 2013.

■ Contents of Services

● Objective: To improve the quality of life of children who need special medical care through the collaborative efforts of developmental medical care and welfare

● Purpose of Services and Target Groups: To support children with developmental disabilities between zero (0) and six (6) years old in need of medical attention by providing medical care and welfare services to improve their and their families’ quality of life by connecting them to the community.

● Stakeholders:

  • 70 persons, including children in need of special medical care and their families
  • Clinics providing home medical care by doctors and home-visit nursing stations
  • Staff who support clients’ activities during the day
  • People in the community

● Main Sources of Revenue: Remuneration from our welfare services for children with disabilities and subsidies

●What We Have Implemented: At Howawa Day Care Centers for sick children (in Azumabashi and Seta), pediatricians specializing in home medical care, visiting nurses from home-visiting nursing stations, physiotherapists, and welfare specialists of Musou collaborate in providing medical care for the children. Regular staff members of Musou who have undergone requisite training (e.g. for the right way to perform the suction of sputum) are in principle assigned a ratio of 1:1.

 Figure 1

上図 ここから
<左>
Hospital (Neonatal Intensive Care Unit, NICU)
Work
Rest
Child rearing (siblings)

<中>
Home
Children with severe diseases/disabilities
Families
Clinic dispatching home medical care

<右>
Schools
Howawa
→Go to
←Make home visits
Home-visit nursing station
ここまで

■ Special Features

■ New Services in Tokyo (for Special Needs)

If we think about the mission behind the services we provide in Handa City, Aichi Prefecture, it all boils down to providing the support needed by people with disabilities to help them live a full life, no matter how severe their disabilities may be, and even after their parents are gone. This mission of giving support whenever and wherever to children needing special medical care in daily life is what Musou was aiming for as the welfare system had not provided it yet. To begin our support for such children, we decided to launch Howawa’s services, which combines medical care and welfare services.

It must be noted that these children needing special medical care are not covered by any long-term care insurance unlike the elderly or even by child welfare policies. In order to generate support for these children, we chose to offer our services first in Tokyo, as we were convinced by our collaborating nurses who said that “Unless we improve the situation in Tokyo, it’s impossible to save children all over Japan.”

■ Making use of existing local resources

Instead of spending several billion yen to build a large-scale facility, we decided to rent a house and renovate it as a small-scale, barrier-free day care center with the capacity of five (5).

Since Howawa Seta was formerly a western-style house that used to be rented out to foreign residents, and since it was already barrier-free, all we had to do was to install an elevator.

 Figure 2

上図ここから
「地域分類」
Area
Major urban areas (23 wards of Tokyo)

  • Population: about 9 million

「地域課題」
Issues
Shortage of places where children in need of special medical care (0 ~ 6 years old) can stay during the day; isolation and exhaustion of families

「インクルーシブの方法」
Inclusive Approaches

  • Needs-based:
    Needs are addressed by doctors, nurses and physiotherapists who do not wish children with special medical needs and their families to be isolated.
  • Center-based:
    By establishing centers to stay in, the potentials of children and families are made visible to many people. These places have seen the collaboration of medical care and welfare services.

「事業/プロジェクト運営」
Services / Project Management

  • Sources of Revenue (by proportion) :
    Remuneration and subsidies: 100%
  • Networks:
    Clinics for home medical care
    Home-visit nursing stations
    Center for Advanced and Specialized Medical Care
    Special Needs Education School

「エンパワメントの対象」
Target Groups for Empowerment
Children who are highly dependent on medical care

「変化」
Results

  • Community:
    In parks, children with severe diseases have begun playing with other children in the community. Specialists from the medical and welfare fields have begun to hold joint meetings.
  • Users (families):
    Children have made new friends and can play with each other. Parents have started having other children. They feel alone no more and willingly participate in the life of the community.

上図ここまで

* * * * *

■ Creating a community-based system (implementing medical care and welfare services)

Howawa Azumabashi is located not far from Aozora Clinic, which also offers home medical care. It has been about 20 months since we began our close collaboration.

This area of Tokyo still retains the warm atmosphere of the good old days when people in community took care of children.

About a year has passed since Howawa Seta was established in July 2013. Since there is an international school and many foreign residents, including children, who live in the community, local residents are quite ready to accept diversity in people, which made it easier for Howawa to blend into the community.

Photograph 2

These children can hardly go out if not for the medical and welfare support that Howawa is providing. At Howawa, they come to know the world outside their own homes, and by playing with friends, they can live normally as other members of society.

■ Ripple Effect (Project as a Model)

Since its inception, we have always hoped to expand the number of Howawa centers like a franchise. Livelihood support for children needing special medical care tends to follow the medical model, but at Howawa, we see to it that each child can enjoy life and childhood by receiving support based on the life model, which became possible through the professional cooperation of contract doctors, visiting nurses, physiotherapists and caregivers. By combining the ideas from the support given to persons with disabilities in Handa city, Aichi Prefecture, with the day care services for sick children in Tokyo, another form of service will begin in Sendai City, Miyagi Prefecture. This shows that the Musou model is steadily increasing in number and in coverage.

In September 2014, Florence, an authorized non-profit organization (in Chiyoda Ward, Tokyo) and a pioneer of day care services for sick children also started a day care center for children with disabilities called Helen in Suginami Ward, Tokyo, to provide day care services for extended hours. It may seem like competition to us, but behind the scenes, we work with each other by accepting Helen’s staff for training on Howawa’s projects, which probably best illustrates that Howawa’s program is gaining influence.

◆How Things Changed

●Working on Individuals

Howawa offers day care services for children aged zero (0) to six (6) who are highly dependent on medical care in daily life. According to Mr. Toeda, the Chairperson of the Board, visiting nurses always ask this question to the parents at detailed interviews prior to admission, “When are you planning a second/third child?” When their first child became disabled and started needing medical care, many parents naturally gave up the thought of having another child, but here at Howawa, we think having a brother or a sister will do good for children highly dependent on medical care. Considering the future life of children with disabilities after their parents are gone, their siblings could give them invaluable support, no matter how severe their disabilities might be, by following the life model instead of the medical model. For these reasons, clinics specializing in home medical care and home-visit nursing stations, which closely collaborate with Howawa, give their full support to parents when the 2nd and 3rd child are born.

● Working with Communities

Musou enforces a strong policy that is more important than profitability, and that is to keep the centers small, and this policy has been implemented in all its programs and services, including the ones in Handa city. Mr. Toeda, who initiated the services, believes that if they could identify designated areas where only persons with disabilities could gather, “they will end up living isolated from the community.” In Howawa especially, because we believe that the living environment of children aged 0 to 6 could have a great impact on them later in life, we limit the maximum capacity to 5 in order to maintain the high standard of their QOL. At the same time, we conduct small-scale projects/services by using available rented houses and making the least renovation to them, which has helped people in the neighborhood understand that children highly dependent on medical care can still live an ordinary life in the community. The 2nd Howawa was established in Seta of Setagaya Ward for strategic reasons. Because Setagaya Ward had the largest target population in the entire Tokyo area, and since there is an international school nearby, we think the community residents would be open to diversity.

■ Current Issues and Way Forward

One of the current issues is the need for a place where children can go to after school. Since the mission of Musou is to provide continuous support “from birth to death,” the day care services offered by Howawa for children highly dependent on medical care between the age of zero (0) to six (6) is only a part of Musou’s ideal. To carry out the mission of Musou, which is to provide comprehensive care services, it would be important, for instance, for such children to be able to stay at Howawa until late, just like when they are at home, and even to stay overnight if necessary. To pursue its ideal, Musou may have to create accommodation sites for small-scale programs, while creating systems that are flexible enough to respond to possible changes in disability category resulting from advanced medical technologies, and challenging some legal restrictions.

■ Analysis Using the CBR Matrix

◆ Areas covered by Howawa

Howawa offers day care services for children highly dependent on medical care, and it mainly covers the area of “Health” through the collaboration of medical care and welfare. Some positive impact may have been felt indirectly, but since it started only a year ago, its objectives probably have not been attained yet.

<CBR Matrix 1>

 Figure 3

◆ What Howawa aims to achieve

The present services of Howawa only covers the area shown in the CBR Matrix1, but Howawa has a vision of becoming a “second home” for children with severe disabilities and their families. This vision may be achieved either by creating a service model similar to those of Musou (the social welfare corporation based in Handa, Aich Prefecture) or by having those service models complement each other.

<CBR Matrix 2>

 Figure 4