Introduction

Susta Manasthiti Bal Bidhya Mandir (SMBBM) Butwal. (An organization for Intellectual/Developmental Disabled (IDD) Children and adult) is a voluntary, non-government, non-political and non-profitable organization established by parents of Intellectual disable's children on B.S. 2051 (18 oct.1994), to provide comprehensive services directed towards the welfare of people with Intellectual disability (IDD) and their families.

The main objectives of this organization are to rehabilitate these children in their family as well as in the society and establish such type of center in the western part of Nepal and to create public awareness and powerful group of parents to support and protect for their rights.

The history of the organization began with effort of the parents of IDD children in this area though; we didn't have manpower, physical facility and financial resources, not skilled and trained teacher, not enough space, even not any chairs and benches and other teaching materials. All the above basic things were managed themselves by founder parents. Some volunteer guardians became ready to teach/care them. In this way the Day Care Center was started in a very small room. At that time there were four parents and their five children only.

"SUSTA  MANASTHITI " is a "NEPALI" word. It means a delay in mental development compared to others of the same age. In English, it is introduce as "Mental Retardation" or Intellectual Disabled or person with learning disabled or Developmental Disabled. An Intellectual disability is characterized by significant limitations both in intellectual functioning and in adaptive behavior expressed in conceptual, social, and practical adaptive skills. This disability originates before age 18.

Aims and objectives of this Organisation

• To provide special education and practical skill for their day to day behavior development. 
• To provide meaningful employment and other of vocational opportunities/sheltered workshop. 
• To Educate the Community on the preventive aspects of IDD and make people conscious of their roles and responsibilities relating to people with Intellectual/Developmental Disabled. 
• To provide special training and rehabilitation in their own society. 
• To provide special awareness program in community. 
• To protect their human rights. 
• To establish care center and advocacy group all related areas. 
• Strengthen and empower the organization capacity. 

Legal Status

Susta Manasthti Bal Bidya Mandir,(SMBBM) Butwal is registered in District administration office ( Government of Nepal) in Rupandehi Lumbini . National Federation of Disabled Nepal ( NFDN), National association for the Welfare of Intellectual disabled (NWID) and also registered in Social Welfare Council . Social welfare council is a national NGO/INGO agency of government of Nepal.

Teacher & staffs

 In the very beginning there were only two teachers, but at present, there are 6 teaches staff, one helper and one driver are full time staffs, among them 4 teachers are working in Day Care Center, 2 teachers in Home Visit Program (HVP).Every day teacher goes door to door to visit children's in their own home, one helper in day care center & one driver for school van. Some teachers have 25 years experiences and well trained.

Parental Involvement & Executive Board

 The parents have 80% majority in the management committee of the organization. The teachers are also parents and guardians. In the executive committee of the SMBBM , there are nine member as per its constitution,  A parents  can have  only eligible for the  post of president, vice president, treasurer and secretary  . There is also provision for minimum 3 women seat. Some selected social workers & related government authorities are also in the board.

Numbers of Children's

There are 115 over children registered (March , 2021) from the deferent part of this region , among them 55 children's  are receiving direct day to day service under  Day Care Center  at Butwal center and branch center at Saina Maina village  Other 65 boys & girls are receiving service under Home visit program (HVP) & counseling service. Some multiple disabled with IDD and very small children are unable to attend the center daily because of different cases like physical disability, travel difficulty & parents have no time to bring his/her child in the school. Such type of children's is receiving services under HVP program.

Activities of day care center

In the day care centre adult girls and boys have been getting special education and vocational training such as reading, writing, behavioral training, candles making, envelope making, sewing, painting, dancing & singing etc. Children play with dolls & balls and moving here and there and enjoy themselves. At that time a teacher watches them very carefully and studies about their activities and interest, with this method we can identify his/her capacity easily.

Few Photo clips of Day Care Center 

Rehabilitation/ Income generative program

A.  Goat keeping/ farming

Time to time, in villages, we distributed /supported 187 goats to poor family for income generating propose related with Intellectual disability

B.  High breed vegetable seed distribution

Frequently we distribute high breed vegetable seed to villagers for increase their production. We already distributed such seeds more than 272 families related with Intellectual disability.

C.   Pig Farming

 As per family background and level of income, we distributed some poor family a pair of pigs for improve his/her income. 

D.  Candle making Dye distribution

To engage and generate the family income, we provide candle making dye for few adults' boys & girls ,To make candle, it is safe for boy/girl with Intellectual disability and also easily to sale.

E.  Swing machine/ Envelop making training

We distributed swing machines for some adult's girl, who is able & trained for swing, by using this machine they can earn little amount in her home.

F.  Yoga training 

  G. Dance

Behavioral Training

 Identification of Coins, Rupees, Cold, Hot, Color, (Red, Blue, White, yellow) cleaning teeth, wearing dress, shoes, shocks etc. 

Toilet Training, Cloth Wearing, Cleaning, Health Care etc. 

Health Check-Up/ Medical Support

Frequently we organize health camp in school. Health Check-Up, Physician & child specialist, Doctors from nearby Lumbini Zonal Hospital, and Siddhartha Children and women hospital, Butwal (about 200m.) and other private doctors & private clinics visit this center as and when we request. No fees are charged. Some medicines also provided free of cost. In that occasion, all service taker families including home visit program are also invited with their child.

Vocational Training

Candle Making, Painting, Sewing, Cutting, Tailoring, Envelope Making, insane strike, Drawing, Cooking Rice, Vegetable & Tea, working in Kitchen Garden, Class room and garden cleaning watering in the garden etc .

Counseling & Meeting

Counseling & Meeting

We are providing, regular counseling service, conducting parent's meeting, Mother's Club Meeting & Management Committee Meeting every month according to schedule time. Meeting also arranges as per need too. In this meeting , we discuses about the  development of children , financial and physical problems of organization, parents complains, teaches complains  fund raising, transportation problem and other related issues.

. Parents training & advocacy

Those parents, having an Intellectual /developmental disabled  ( IDD) child may increase stress, take a toll on mental and physical health, make it difficult to find appropriate and affordable child care, and affect decisions about work, education/training, having additional children, and relying on public support may experience uncontrollable tears, sadness, and feelings of hopelessness. Parent may he or she is somehow to blame for the disability or the situation. Parent may act out his or her anger or direct it toward another person.

This program improves the parent's knowledge about IDD,s  difficulties and the related educational and needs of their children and also improves their child learning accessible, Improve the emotional atmosphere at home by teaching them strategies that will help them, as parents, to prevent stress and other negative emotional that often arise in children with IDD and their families. It will be helps a positive family school relationship, adjusting their expectations of each other as significant educational contexts for the child.

      It's said that the first school for the child is a home for any type of children, according to this, the home and his/her parents is a more important to an intellectual disabled child,

The child may have a special need, but he/she also needs discipline in life. This means that they need to understand and respect the rules set by their parents/guardians. Parents might need to adjust a few of them along the way to help their learning process.

        It helps when the parents feel happier and more involved with their children's education. ,a good connection with the school lets parents understand the curriculum better and the advancement of their children. It also helps them feel more comfortable and happier with the quality of education. It can even motivate those who did not finish their education to continue it.

Mainly we focus on following points 

Ø  Parenting.The first way parents can support their children's education is by providing a healthy home environment

Ø  Communicating

Ø  Volunteering

Ø  Learning at Home

Ø  Decision-Making

Ø  Collaborating with the community

Ø  How can you learn more about special education?

Ø  What is the disability and differences between other disability & Intellectual Developmental Disability?

Ø  Role of parents on right based approach for IDD & responsibity of parents related with IDD children

Ø  Women and girls empowerment

Tour/Visit

Tour/Visit

Time to  time  we visited different historical places, Market, Temple, Normal School, and Community based awareness activities, Zoo, Funny Fare etc...

The outdoors is a key learning and play environment for all children. Being outside allows children to interact with their environment, greatly aiding their development. They enhance their socializing skills as they discover new and exciting things with their friends, and it is no different for children that have disabilities.

Outdoor activity increases cognitive functions such as thinking, remembering, decision making and learning. This is doubly important for children with disabilities as the outdoors can make learning much more fun. For children that have autism and IDD Intellectual/development disabled ,outdoor play provides them with the space they need to work off that excess energy and interact with new people. It has been proven that outdoor play helps enhance their mental focus, making learning become that little bit easier

Fees

This school provides free education and training to all with the active support and involvement of guardians and parents to reach the community's objects. No fees are charged, however donations are accepted. In the very beginning this school was established by the financially contribution of four founder parents.

Age Range

5 years to 35 years. (There is no age bar for the homeless & very poor children) 

Sports:

Every year we organize local and regional special athletic games under the rules and regulation of Special Olympics International. In that day, parents, social workers, political leaders and local authorities are invited. We also participate / invited National and International level Special Olympics. We have been participated in   International Special Olympics at China on 2006 and Las-angelus USA at 2016, In both event we are successfully won the silver medal.

Picnic

Every year we organize picnic program in summer for the enjoyment of children. All children, parents/ guardians and other related persons attend the picnic. Parents share all the expenditures of Picnic each other. In that day, children feel very happy & enjoying. Children dancing and other parents sing songs, Children and other parents eat delicious food and they (parents) also enjoy with children.

Mother's Club

 Parents, Mothers in particular meet at the center every last Friday of the month including HVP families. Some board members are also attending that meeting. Problems of children and the day care center are discussed during the meeting. This has been a good medium to exchange news and views of mothers. There has also been a tradition that one mother volunteer to provide tea and snacks at the meeting. This has been going well and is likely to continue well into the future.

International Disable day

 Every year we celebrate International disabled day, In that occasion all children's, & their guardians, SMBBM, S well wisher and social workers, local authorities are invited. We distribute fruits, tea & biscuits etc and also organize cultural program. 

Community bashed Awareness Program & Participation

Community bashed Awareness Program & Participation

Awareness raising means making people conscious about a problem or issue of people with IDD. We want to make a certain topic or issue more visible within a community. Awareness rising is very powerful, because it educates people about IDD which are new to them and encourages them to participate in bringing change.

Disability awareness helps in subsiding the stereotypical mindset of the society, hence providing vast opportunities for everyone to get involved in creating a positive, inclusive society for all.

Primary prevention may include: primary health care; prenatal and postnatal care; education in nutrition; immunization campaigns against communicable diseases; measures to control endemic diseases; safety regulations; program for the prevention of accidents in different environments, including adaptation.

Every year, we celebrate international disable day on Dec. 4 & Intellectual Disable Day on 18th Sept. Every year we organize community based awareness program in different villages. In this program, we aware to participant about what's the Intellectual Disability, how we care them, what are their rights, duties and responsibilities of parents, community as well as the nations. In that occasion, the Local Government's authorities, health post, Police security center, Village development board, political leaders, school and campus level teachers, social workers, local NGO, parents, and general public are especially invited. We also participated National & International form for the development of organization.

Building construction

After very long struggle, we succeeded to allocate a plot of land in a quiet and non polluted area by the Government of Nepal, Ministry of forest at Butwal Municipality ward No. – 7. By the remarkable support of Swiss Nepal Society (SNS), and our good wish wisher, Swiss couples Mr.& Mrs. Karl and Regina Mueller, SMBBM was able to lay the foundation of school building and one year later the school building was inaugurated by SNFA vice president Annemarie spar .

AMDA high school student union of Japan, number of benevolent citizens from Butwal and from Switzerland supported the school and in building construction. Now we have two story building with 11 rooms, 5 toilets, one big meeting hall, beautiful field and kitchen garden and various types of playing equipment, which was supported by National children welfare foundation (NCWF) Bhairhwa Nepal.

The map and design of the existing school building was prepared by Mr. Karl Mueller. During the construction period of the building, frequently he visited the construction site and giving various suggestions,

In the development process of SMBBM, Swiss couple Karl & Regina Mueller encourages us from very beginning to up to now.  They supported and suggested not only financially, they supported us morally & spiritually too, that was a very great tool for us. Their support has repeatedly played a key role in our success to run the day care center smoothly. So would like to express our heartily thanks to all supporters, Specially to Mr.& Mrs. Karl & Regina Mueller for their continues &  unforgettable support.

Home Visit Program

Home visit Program (HVP) is a one of the most important and effective program of the School. This program is especially designed for those Intellectual disabled people, who are very poor, and not able to join the center (daily) because of severe cases, like lack of knowledge, poverty, not able to pay transportation cost, parents have no time to carry their child to school and some other disabilities with Intellectual Disability. In this program, teacher from the school go door to door, meet with effected families, discusses about his/her children's difficulties, take all information. (We have a checklist; it covers all family status, economic, land, business, education of family health disease etc)

After the interview with family, teacher advice to the family, the cause of Intellectual Disability, prevention, how we can care the child, what are the duties & responsibilities of parents. Etc. Finally, teacher collects the reports and summit to the center, after that teacher staff discusses about the problems and point out the main objects what kind of service is needed? And finally a decision is taken.

Home visit program is very popular in villages especially in remote areas. Now this program is covering 30 KM.west , 15 Km. south, 20 Km. east and whole 1 to 19 ward committee of Butwal Municipality from the main center . This service is very effective as well as useful for the villagers those who are very poor and living in remote areas of village.

The program of serving the Intellectual disabled children at their doorstep is a remarkable achievement of this institution. It is very popular in remote area. At its beginning the program has achieved a great success and is being appreciated by the different sectors of society. Whenever the teacher go to the villages to visit the children. They become so much happy that the whole environment cheers up for a moment. In reality the physical and spiritual support of our well - wishers in the area of helping humanity through the help of disable is really a task of high appreciation.

Our services under Home Visit Program (HVP) are as follows.

Under HVP, we collecting report, including financial, education, and health and families members. Birth history of effected individuals, providing information to parents about Intellectual Disability, role of mothers and fathers , neighbors, causes, duties and responsibilities of whole family members, right of children etc. According to the capacity, interest, physical fitness and age range we prepare or schedule as follows:

Behavioral training

Identification of coins and note. Color, Red, blue, black, white, cold, hot, cleaning, household works etc. Special education. Like ka, kha, ga (Nepali word), 1, 2, 3, 4, 5 counting, A.B.C.D.etc. Physiotherapy, Speech therapy, Vocational training, etc.

Other Activities

Meeting with family member, organize health check-up camp, regular area meeting. Coordinate VDC office and other related organization. Teacher visits one family twice a week.

Extension of a Branch

We have succeeded to establish a branch school at Dudharaksy VDC, around 30 K.M. west from Butwal.  (At present Sainamaina Municipality). In the very beginning in that region, we have provided Home Visit program (HVP) At that area there were  around 60 people are found intellectual disability. We encourage and aware local parents as well as local government authorities on the establishment of a day care center for intellectual disabled people, after the very long struggle we able to got some land near the government public school.

After that we collect some fund with the active support of local parents, District development committee of Repandehi district  and some other social workers, In that way  school building was constructed. In that  Building there are two room and one toilet , SMBBM Butwal is supporting teachers salary, teaching materials and other  furniture fixture.

Some remarkable achievement of the organization

• 1.    Home visit program is so much popular that, nearest villages are keenly requesting us to lunch this program in their areas.
• We have some skilled vocational teachers. As a result, some of the adults are able to make candles, incense stick and envelop at their own home and sell them themselves in their own areas.
• We became able to arrange marriage between adult ID boys with normal Girl. Now they have happy life with beautiful baby.
• We have distributed 36 families' two pair of goats to the very poor family of Intellectual Disabled to increase their income as well as to rehabilitate those adults in the family.
• We have succeeded to exchange some scenario of the community as well as local government authorities as a result frequently we are receiving support from District Development committee,  municipality and some regular support from District education office . Now they are trying to provide some priority to such type of people.
• We became famous between local NGO & INGO and local authorities. As a result we are invited in every   community   based program and general assembly of different organization  
• We have won the second position in Shanghais International Special Olympics at 2007, and also successfully participated Los-Angeles special Olympics game on 2015 We are also the District level and National level champions in dancing competition in 2007 & 2008
• The Group of Student from Different Medical Collages and Nursing collages choosing our organization for the research propose.
• We are also become able to board member of Special Olympics Nepal and National     Association for the welfare of Intellectual disabled (NWID) Nepal. These are the umbrella organization for ID people at Nepal.
• Nomination: -  Our president Mr. Lok Nath Bhusal is Nominated  as a member  of  the disabled coordination  committee  of the local government , this committee is formulated under the constitution of  Nepal , This committee is working for the welfare of people with Disability to make the policy .
• Celebrating  silver jubilee We celebrated our 25th anniversary on January 25, 2020 On this occasion we publish our souvenir

Participation International Seminars-

• “A SOCIETY FOR ALL “ held on 1998 in Oslo Norway,  (Norwegian Association for persons with Development Disability, Norway)
•  AFMR – Asian Federation for the Mental Retardation which was held in Katmandu, Nepal on 1999
• We have successfully Participated China, Shanghais International Special Olympics 2007
•  We have successfully Participated Los –Angeles International Special Olympics 2015.
• National convention & international forum 2016 on 27-29 Oct 2016 at Orlando Florida USA.

Prospective

Emphasize vocational Training

• Productive occupation, Vegetable and Floriculture Industry contacts. Integration of Adult Disables.
• Staff & Teacher’s Training, Parents training & Awareness Program, Transportation of Children
• Future Financial Structures Government Support & Subsidies, Establishing Donor’s Club
• Hostel- Accommodation for children from remote areas, Establish to Rehabilitation center
• To develop/ establish same type of center in other places of the Nepal.

Supporters

Swiss Nepal Society (Switzerland) Karl & Regina Mueller

• Funds for school Building construction 2001- 02
•  Home Visit Program 1999-03
• Teachers & Parents Training, Community based Awareness Program, Building construction.
• Teaching Materials , Tools & Playing equipments
• Vocational Training Programs,  Sports Materials' for special Olympics
• Other general day to day running  cost  support
• Support , Recycled paper  envelop- 2007/08
• Support for building repair earthquakes damage 2016/2017
• Other technical & financial support  every year

 High School’s Students Union, Japan

Through AMDA International- Japan (Association of Medical Doctors of Asia)

• Funds for School Compound Wall.
• General Support for Public Awareness Program.
• Support for home visit program (2004 to 2005)

 Building Site    Provided by the Ministry of Forest, Government of  Nepal.

Esther Benjamin Trust UK

• Home Visit Program 2006-2008
• Building & Ramp construction
• Playing equipments
• Other general support

Trust One million Lina Mueller trust (2008) Switzerland (via- Karl & Regina Mueller)

• Teachers Salary
• Other

One, Teachers salary from Butwal Municipality Nepal    2008

One, teachers and one helpers salary from District Education Office (Nepal Government 2008.) 

Other expenses are managed by school management with the support of parents. Visitors  and other social activist.

School Bus supported jointly by Rotary club of Butwal,, Karl & Regina Mueller Switzerland and Government of Nepal for transportation and other office equipment (2012)

Conclusion

This is a only one model an Intellectual/Developmental Disabled care center at Nepal. This is managed and run by parents only. This is a welfare oriented organization established by the parents of Intellectual Disabled children with the aim to help their children becoming accepted members of the community and live a life in dignity.

It is our believe , that the quality of their ( IDD ) life will only improve, when their parents take active care and get involved in their education. We welcome anyone to be a member of this school and support organization with actively and of any form. :-

Our advice to parents is :

"

Make them happy,

Keep them happy,

Give them opportunity,

That's one good way of training these children.

"

For More Detail Information please Contact:

Lok Nath Bhusal (Founder, Parent & President- SMBBM)

E-mail: iddchildrenbtw@gmail.com mrchildren_btw@yahoo.com lnbhusal5@gmail.com

Face book :- ID children

url – https://www.intellectualdisabled.org