Portage teaching as the start of a regional intervention system 

Shoko Watanabe, Ibaraki Prefecture Portage Association 
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Networking of Community Intervention starting from Portage Teaching  

Naomi Sukegawa, Toride-City Health Center 
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Portage teaching as the start of a regional intervention system 

Shoko Watanabe, Ibaraki Prefecture Portage Association

In July 1988, the International Portage Conference was held in Tokyo.  I was privileged to speak at session A, on "Issues relating to instructions under the portage program".  I presented the situation of Ibaraki prefecture where parents who were undergoing the Portage teaching were promoting the idea of early intervention through the community.  After my presentation, there was a discussion about the key role played by community nurses and what is needed to realize an ideal situation for early intervention.   

I thank you for this opportunity to present my follow-up of research from my previous presentation ten years ago.  My presentation is not about academic research, but I will be sharing with you how the Portage program has been promoted and what we have achieved in Ibaraki prefecture.  Some of the participants from abroad may not be familiar with the system in the prefecture of Ibaraki.  Instruction under the Portage Program in Ibaraki was set up as a project for health centers in 15 cities and towns as prefectural project.  It is the only prefecture in this country to do so.  

I hope my presentation will help give some guidelines to people who want to start teaching the Portage by her/himself without belonging to certain organizations.   

First I would like to introduce Ibaraki prefecture.  It is situated in the Kanto region with a population of 2.97 million made up of 19 cities, 44 towns and 23 villages.  The prefectural economy is based on agriculture and is conservative in nature.  Public transportation in the prefecture is very limited; therefore, one must drive a car everywhere.  For this reason, each region has maintained its regional characteristics without being affected by other regions.   

For children with developmental delay, there are counseling centers, health centers, hospitals and schools for children with MR.  Every city has a community health service center and there are some cities with day-care intervention centers.  However, the early intervention which is taking place in the facilities I mentioned consists of early diagnosis, a developmental examination, and observation of progress.  I understand the situation in Ibaraki is no worse than in other prefectures; Ibaraki has a lot to improve regarding services for social welfare, education and health-care.   

The situation has not changed much in the last decade at the prefectural level, but Portage teaching has spread widely in Ibaraki.  The fact that little progress has been made by the prefecture has led Portage teaching to develop even more.   

The Portage program is presently being carried out in health centers in 15 municipalities and in  chapters formed by parents who wish to receive the Portage instructions in 13 municipalities.  30% of all communities in Ibaraki have access to the Portage program.    

The parents are largely responsible for the dissemination of the program.  Parents founded and operate the Ibaraki Portage Association.   
Next, I would like to talk about how the association was founded.  I started teaching 5 children with Down syndrome in Mito City in 1984.  Within a half a year, more parents came from other communities to receive Portage teaching.  As I heard it was very difficult for parents from distant communities to come to Mito City to receive instruction and also that there were parents who were unable to travel to Mito City for various other reasons, I decided to make home-visits to such parents.  As I started to visit other communities, I found that there were even more parents interested in the Portage program in those communities.  Thus, Portage teaching spread and in 3 years there were 5 groups of parents I visited for Portage teaching. 

I was very much aware of regional differences however. As I taught in various communities, I realized the regional differences among the communities were greater than I expected.  The prejudices and discrimination against those with disabilities were strong in some areas and there were many improvements to be made in the fields of social welfare, education and health care.  There was a lack of understanding and awareness among administrative bodies.  The parents and I discussed the social issues a great deal as they could not be solved by only receiving Portage instruction.  The parents visited the health centers and the community administration to advocate the necessity of providing the Portage program to support parents who raise children with developmental delays.  In 1987, the parents of 5 groups took the initiative to found the Ibaraki Portage Association to promote Portage teaching in other communities in Ibaraki prefecture.   

In the brochure the parents made at time of foundation of the association, the parents stated: "It is our wish to provide parents with the early intervention which is necessary from the time they find out that their children have disabilities and to provide appropriate interventions by appropriate instructors.  We hope that parents can raise their children in an environment where they receive adequate medical, educational and welfare services in  
the communities where the children were born." 

Thus, the circle of parents expanded, and today, there are 14 chapters in 10 cities, 3 towns, and 1 village with over 200 members.  The association is operated by the parents: the chair and executive members of the association are made up of the parents themselves.   

From the beginning, the association has organized such events as the annual "community-based intervention conferences" in various communities in the prefecture , seminars or out of town classes.  A newsletter is published once a year: we are also active in exchanging information and forming study groups like the "Early Intervention Research Group" in health care centers.   

Individual teaching is carried out at each chapter.  Group teaching take place concurrently at 6 chapters.   

Since the regional situation of each community is so diverse, it is difficult for us to find a focus point for prefecturally-oriented activities.  Instead, for the last 2 years, the association has been divided into 3 blocks; the northern block, the southern block and the western block.  Each block concentrates their attention on the activities suitable to their situation.  This year the parents who receive Portage instruction through the health care centers are forming a group, too.   

Teaching at the health care centers first started in Toride City in June, 1988.  Then it spread to Taiyo Village, Ryugasaki City, Sowa Town, Sanwa Town, Sakai Town, Sashima Town, Inashiki Town, Ishioka City, Asahi Village, Iwase Town and into the Eastern block including Edosaki Town, Shintone Town, Kawachi Town, Azuma Town, and Sakuragawa Town.  Currently, there are 11 locations in 15 communities.   

Most of the health care centers were informed of the Portage program by the parents or by the regional Portage activity centers.  Why did those health care centers incorporate the Portage program into their developmental counseling projects? 

The regional characteristics of the 15 communities vary: some are more populated and more accessible to transportation and medical facilities, and others are agricultural communities with decreasing birth-rates or poor medical services.  Therefore, the content of the services provided by the health care centers or the number of facilities varies from community to community.  For the health care centers with a large number of community nurses, the workload is divided into different specializations.  However, in those with fewer community nurses, fewer people must cover more fields in health care.  Also, in the more populated communities, it is difficult for health care centers to communicate with other sections of city hall.  In the agricultural communities, the smaller size of the administration and closer relations among the villagers make things much easier.  The connections to the specialized institutions are limited in city communities and the smaller communities are often even more isolated.  Needless to say, funding is always an issue in the smaller communities.   

However different the situations surrounding the health care centers are, the reasons the community nurses wanted to start the Portage program are similar.  They questioned the effectiveness of the psychological assessment, behavior observations or group teaching they were providing.  They questioned whether the parents were satisfied with the services they received from the community health care centers.  Then, they started to wish they could provide more practical support for the parents.   

No matter how much enthusiasm the community nurses had for Portage teaching, a project needs to be approved by the administration.  Often, local administrators were reluctant to initiate any kind of projects if clear outcomes were not apparent.  They were especially reluctant to start such programs as the Portage program, an early intervention program for children with handicaps, which they had never heard of.  It was a barrier we had to overcome.  We did so by explaining the program as a kind of support for parents who have trouble in child-rearing.  We argued that the cost of the program was not much and showed the outcomes of the program from other neighboring communities which had incorporated the Portage program earlier. 

We started developmental counseling projects at the health care centers.  Some health care centers wanted to educate community nurses so they themselves would be able to give instruction with the program and others requested instruction be given only by Portage instructors.  Variations occurred depending not only on the number of community nurses, but also on how the health care centers situated the Portage program in their system.  In any case, they gave me clear objectives on how to start the Portage program at the health care centers.  I started the program with seminars for the parents.  I wanted the parents to take the program not because they were told by the community nurses but out of their own choice.   

The teaching methods varied for each health care center.  But for all centers, I asked the community nurses to extend their services outside the centers to promote Portage teaching in society.  The nurses collected information on regional education, welfare, and health services for the children and how to connect to such institutions.  This helped the nurses realize the issues of the communities and share the concerns of the parents.  Although they may not directly associate with the children, by studying the system, they can gain the trust of the parents to be treated as partners.  Having community nurses contribute to helping the children is the start of early intervention.  

Currently, there are some centers where the community nurses can teach by themselves and my role in relation to them is changing.  Ms. Sukegawa will report on the details of my activities at the health care centers following my presentation.   
The Portage program has been incorporated as a developmental counseling project by the social welfare council since April, 1988, starting in Tokai Village and Shimotsuma City.  

The Tokai chapter in Tokai Village was founded in 1985 and group teaching started the following year.  The project of group teaching, the "Tsukushi Class", received funding from the Asahi Newspaper Company and became a project of the council.   

In Shimotsuma City, the Portage program became known when the parents who were receiving instruction in Mito City made speech at a conference for a group of parents with children with handicaps in Shimotsuma.  The council heard of their experience with the Portage program and of the necessity for such a program, and decided to incorporate the Portage program.   

The significance of the developmental consultation project in Shimotsuma is stated by the social welfare council as follows:  

The Shimotsuma Social Welfare Council accepts the Portage program as a consultation project and aims to establish the project, based in the city, as a social asset.  The goal of the council is  to set up the system to support the children in their future as well.  The operations of the council have advantage of not being restricted by the constraints of the various rules of the administration and the barriers between the different administrative blocks.   

 After the Portage teaching was incorporated, all the social welfare councils set up toy libraries.  The libraries are popular among the children with or without disabilities.   

 Through my experiences in teaching at the chapters, health care centers, and social welfare councils, and through my activities with the Ibaraki Portage Association, I realized that the Portage program needs to be taught not only at the request of the families, but also by the community, in order to be based in the community.  

  Who can prove the program is the teaching needed by the parents?  It is not us, the Portage instructors, to decide if we are needed.  It is only for the parents to decide if the program is what they need.  Once they decide the program is good for them, they will spread the word in the community.  The community does not accept only the word of the instructors, nor of academic presentations, nor lectures by eminent researchers.  The community need to be convinced of the need of the program by listening to the experiences of the parents who undergo the program themselves.  Also, the community must benefit from the program as well.   

 Why must the Portage program be based in the community?  It is because the principle of the Portage program is based on early intervention, and that is where things must start.  

 The current issue of community-based intervention is that it does not have a starting point.  The current system is based on no certain principle of early intervention.  We can promote the idea of early intervention by teaching the Portage program.  Also, we can prove that the starting point of early intervention is the support of the parents through the outcome of teaching.  I have already discussed the function of the Portage program as community-based intervention system in the municipalities with smaller populations.   

 From my experience, I would like to emphasize the importance of home-visits, to teach in the communities where the families live.  Otherwise, the program cannot be established as community-based. 
 
 

Networking of Community Intervention starting from Portage Teaching 

Naomi Sukegawa, Toride-City Health Center 

I would like to make my report on Toride City.  Toride City is situated in the southern end of Ibaraki prefecture and is 40 km from downtown Tokyo taking only 40 minutes by train.  It is one of the few cities in the metropolitan area to have both convenient access to the city and a good natural environment.  The population as of April 1, 1998 was 83,942 , and the number of the newborns was 781 in 1997 with a birth rate of 9.3 %.  The birthrate is slightly lower than the national and prefectura l level. 

There are several general hospitals in a range of 40 km, although the intervention system has not quite been established., The Portage program was incorporated in Toride City in 1988 and developed close contacts with other related organizations with the purpose of supporting children with handicaps in the community.  I have been working as a community health worker and will report on the activities of the last 10 years.   
    
2.  Activities and role of community health centers and public health units 
Health centers 

1.   There are health centers located in every municipality providing such services as health consultation, advising, and health examinations for residents of the community.  Six community health workers are involved in Portage teaching as a part of maternal and child health services.

 
2. Public health units 

  Public health units are provided by the prefectures and cities and come under the jurisdiction of the prefecture.  Their services are involved in mental health, incurable diseases, tuberculosis, and AIDS by collecting information on community health services to connect each community and to give technical advice to the communities if necessary.   

4.  Portage teaching in Toride City 
 

1. Name: 

Consultation for communication 

2. Teaching Style: 

two or three times in a month 
eight idividual cases 
 

3. How the community health workers are involved: six workers are assigned to children who are taking the Portage program. Two workers take part in the teaching of individual children by Ms. Watanabe: one to write up the instruction cards and the other to observe and record the information on the children.  For several years, two of the workers involved in the Portage program have been giving Portage teaching to several children under the instruction of Ms. Watanabe.   

 

		1996	1996	1996		1997	1997	1997
		A	B	C		A	B	C		D
4 month old check-up		795	693	91.3%		789	732	92.8%		1
7month old counseling		754	635	84.2%		785	490	62.4%		0
12 month old counseling		775	512	66.1%		732	460	62.8%		3
1-1/2 year old check-up		749	698	93.2%		767	696	90.7%		18
3 year old check-up		762	725	95.1%		732	682	93.2		50

 
 
 

A Number of children subject to check-up or counseling 
B Number of children who took the check-up or counseling 
C Rate of check-up or counseling 
D Number of cases which resulted in starting the Portage program 

1. Through home visits for newborn infants 2 children (1.5%) 
2. At infant check-ups and counseling  72 children (48.6%) 
3. Through telephone inquiry from parents  52 children (35.1%) 
4. From reports from kindergartens, day-care centers or intervention facilities  
5. 13 children (8.8 %) 
6. At the time of sibling counseling  4 children (2.7 %) 
7. Introduced through other Portage parents 4 children (2.7 %) 
8. At the time of tooth brushing class at age 2 1 child (0.6 %) 

Nearly half of the children started the Portage program through infant check-ups and counseling, and nearly 40 % started through telephone inquiries by parents. 

(4) Conditions of the infants taking Portage teaching 

1. Down syndrome  --  10 children (6.7 %) 
2. Epilepsy or infant spasms --  5 children (3.4 %) 
3. Cerebral palsy  --   3 children (2.0 %) 
4. Chromosome abnormalities  --  2 children (1.5 %) 
5. Hearing disabilities   --  2 children (1.5 %) 
6. Hydrocephaly    --  1 child (0.6 %) 
7. Microcephaly   --   1 child (0.6 %) 
8. Subdural edema   --   1 child (0.6 %) 
9. Spinal bifida    --  1 child (0.6 %) 
10. Developmental delay   --   38 children (25.7 %) 
11. Delayed speech   --   84 children (56.8 %) 
Total 148 children

6. Necessary approaches to the community as the Portage teaching progressed for children 
 

( I ) To schools 

At the community health units, Portage teaching is offered up to to the time of elementary school enrollment. As teaching continues, lack of information and problems about schoool palcement have become apparent.

Since 1991, a seminar for parents on school placement has been conducted once a year with the cooperation of the school board. 

In the case of M, who was about to enroll in elementary school in a few months, we thought it was necessary to collect more  information about local schools from the teachers in charge of special education. We visited classes for children with mental distrubances and observed special education classes.  We asked the teacher in charge to explain the teaching style and content of the class for children with mentally disturbances and in the special class, and at the same time, we explained the progress and current status of Portage teaching for M. 

The teacher in charge of special education at N elementary school came to aobserve the Portage teaching for M. 

We started to exchange information on M between the community health center and N elementary school unit M enrolled in the school. 

We also exchanged information about S with local elementary school T as in the case of M. 

Thus, we developed a system of exchanging information between the community center and local elementary teachers. 

Since July 1995, community health workers, workers in day-care facilities formothers and children with handicaps, and speech therapists in general hospitals in Toride City have been attending regularly a workshop on special education conducted bi-annually by special education teachers from schools in Toride.  At the workshop, we exchange information on the children we currently teach and follow-up information on the children at schools who had participated in the Portage program.   

There many children who go to day-care centers or facilities for mothers and children with handicaps while they receive the Portage teaching.  First, on the phone, we explain the condition of the children at individual teaching settings as in the Portage program and ask the facilities how the children are adapting in the group setting. 

Since telephone sessions were inadequate, we wrote up an information letter for the facilities to describe the teaching content and chil's condition during Portage teaching. We sent a letter to the facilities every time the child had a session. 

Teachers and workers from related facilities came to observe Portage teaching after reading the information letter so they could incorporate the Portage program into their workplaces.  We obtained information from them on the children in group settings.  Our exchange of  information has continued.    

(1) Benefits of incorporating the program as a community health center project 
 

After a child is born, the community health center is involved a great deal through home-visits or infant check-ups. Using the Portage program , we can take necessary and appropriate measures for counseling or guidance at an early stage of development. 

The Portage checklist gives a new perspective at the time of infant check-ups. Also, our involvement with the children from the time of their birth allows for total and long-term observation of a child's development. 

The community health center carries out pregnancy classes and various check-ups for the members of the community.  It makes it easier for the family to visit us for consultation on child-rearing, development and concerns about their children.  

As a public service provider, it is easier for us to connect and exchange information with such facilities as kindergartens, nursery schools, day-care facilities, elementary schools, or medical facilities with which the Portage children are involved. 

By showing the effects of the Portage program as the center project to the administration, the project benefits by being able to secure funding. 

The parents can utilize the center or community hall as a place for meetings by parents whose children are at school or taking the Portage Program. At the meetings, the parents have the opportunity to exchange information or engage in various activities. 

Through Portage teaching, the center can be involved in supporting child-rearing in Toride City.

  I learned about the disabilities and the conditions of handicapped children when I was at the school of nursing, and I pitied such children.  Then I visited a family whose child had Down syndrome; the rooms were dark and the curtains were drawn.  The mother and child were not cheerful and I felt certain that having a child with disabilities was very sad.  I did not receive any instruction or briefing from the senior student with who I visited the family, and I still remember the visit to observe the family.    

  From June of the year when I started working as a community health worker, Portage teaching was started in Toride City.  At the beginning, I did not understand the meaning of Portage teaching.  As my observation of the teaching and my involvement with the children continued, I have noticed my attitude toward the children changing.  I started thinking that the children with disabilities are not always to be pitied.  I realized that each child was very special and valuable.  What they have is uniqueness rather than handicaps.  It has become a great pleasure for me to see the children I teach with the Portage program achieve the tasks which I help analyze.  At the same time, I realize the depth of potential for development in each child.  Portage teaching gives me a concrete direction to follow in supporting families of children with unbalanced development.    

  Children develop in various ways.  There are children diagnosed with pathology, children in the gray zone, and those with slow development in speech. We, the community health workers, encounter these children at various stages of development.  We need to assess the status of the children precisely and show what is necessary to support the children in a concrete direction.  Portage teaching allows us to do that.  I also think that parents should have a choice in how to bring up their children and that the methods are not limited only to the Portage program.   

8. Tasks for the future  

  The teaching a child receives at the community health center in the Portage program is only a part of the life of the child.  The children belong to other facilities as well.  They attend  kindergartens, nursery schools, day-care facilities, hospitals and other intervention facilities.  We believe in the importance of sharing information on a child among the related facilities.  Currently, we are in the process of establishing a clear relationship among facilities.  We have been working with the children through the community health center using Portage teaching, so on various occasions we feel the need to promote understanding of the Portage program.  Also, to establish health service projects for the mother and child in more clear and concrete way in Toride City, we feel it is necessary to appeal to and connect to the related departments in the city administration.    

  We would like to set up a yet better system of intervention in the future to meet the needs of every case we need to cope with based on the network we have.