Support a differently abled person live independently by Raphael

One of our many objectives when planning the long term goals for a person with intellectual disability is to train the students in such a way that they eventually become as independent as possible. This gives them self confidence and helps them in living a life with dignity in the community. Not all students can achieve the same level of independence. The more able ones are given training in vocational skills such as ,but not limited to, gardening and horticulture, paper bag and candle making, cooking and hospitality. Vocational training modules are implemented and goals set based on individual ability. Thus when learning how to cook the students also learn the importance of hygiene; when making candles they also learn about colours, measurement, and quantity. Apart from the above, the students participated in sports and cultural activities, inter-school and inter-district in the last 6 months.

Many students with intellectual disability are affected by Epilepsy and this can be a problem when they are working. Staff around them need to be aware of the warning signs and take all precautionary measures. Also they learn at a much slower rate and thus the task that seems simple to a typical child, has to be broken into many tiny steps. There will be many festivals in the next six months and the students will prepare to celebrate. Those working in the candle workshop will be extremely busy preparing wax filled diyas for Diwali. The students will participate in the craft workshops which will be organized by Spic Macay as a part of Virasat Festival. Sports day will be celebrated on 14th November. The annual picnic will take place on 3rd December..

SANIYA BISHT, date of birth 6 November 07, date of admission to Raphael 25 October 2021. 15-year-old Saniya lives with her parents, younger brother and grandparents in Dehradun, Uttarakhand. Her father is in the Army, her mother is a housewife and her brother is in school in class 8. Saniya also attended the same school till class 2 but was unable to cope up with the regular curriculum. She was referred to a special school and after a change of a few schools, she joined Raphael. Initial assessment findings indicated moderate intellectual disability with developmental delays. She was able to identify and could write numbers from 1 to 50. She was also able to tell the time by the hour, read and write some two letter words in both Hindi and English. She communicates verbally and is independent in all activities of daily living. She was placed in the Prevocational class and given training in skills like cooking, hospitality and other domestic skills. Such has been the impact of the trainings that she can now cook a variety of dishes at home. She has become an integral part of the recently started canteen. Over the course of almost one year, she has been trained in other activities also, and has become a good dancer. She has participated in national level dance competitions. She has good etiquette .Saniya has the potential to eventually become a good employee and a worthy asset to her home.

As the lockdown eased and restrictions were gradually lifted, students started to come back to school. Children with disability have perhaps faced the largest setback during this time with difficult access to online technology, missing out on any social skill development and many have perhaps regressed in what they have learnt. It is common knowledge that they require constant repetition of instruction to maintain skills and this was just not possible. Most of our beneficiaries are from the lower economic strata of society and the parents themselves faced the challenge of loss of jobs and illness. However, we have managed to vaccinate every employee and student above the age of 18 years. Strict Covid protocols are in place but it is often difficult to implement some for persons with disability, for eg, wearing a mask is difficult for the most. The re-opening of the school has been a great relief for teachers, parents and students alike as it has made teaching easier and more effective Evaluations of Individual Education Programme goals set for 6 months were done and it was good to see that most goals were achieved. A new set of goals was set for each student for the following three months There were many events during this period. Several festivals were celebrated. On occasions like Independence Day, Janmashtami and Raksha Bandhan, the students participated in special performances with much enthusiasm and interest. A two day Special Olympics State Level Selection camp was organized in Rishikesh, Uttarakhand on 19th and 20th October. The games included Handball, Table Tennis, Badminton, Volleyball and Powerlifting. Eight students from Raphael participated, and five students from these were selected for the next level of games. Congratulations to Sonali, Priyanshi, Nikita, Deepak and Layba. Special educators Madhu Rawat and Neeraj Bhatt attended the camp as coaches. In September 2021, 26 children were assessed for sensory and occupational therapy needs by a visiting Occupational Therapist – Ms Theresa, from Samvedna, in Thatyur, Uttarakhand. She spent a week at Raphael and made a programme for each child. This will be implemented by the concerned staff and a follow-up for the same will be conducted as and when needed. On 14th Oct Dussehra was celebrated and both students and teachers participated in various events. The students performed a dandiya dance, followed by another dandiya by both students and teachers, and then one with staff only. The effigies of Ravan, Meghnad and Kumbhkaran were burnt in the presence of three students who were dressed as Lord Ram, Lakshman and Sita. The highlight of the programme was when chocolates were distributed among the students.

A total of 21,800 diyas for Diwali were made by some students under the guidance of their vocational trainer. They had been making diyas since August and have worked very hard to ensure that they were of good quality. Not even one diya was leftover this year and many disappointed customers were turned away empty-handed.

The Annual Sports Day was celebrated on 15th November and all the students participated with enthusiasm. The students took part in the March Past, the 20-meter race, 20-meter walk, Bocce, sack race, etc. A Tug of War also took place between the teachers and the students, and the students won. The day concluded with a prize distribution ceremony. On 3rd Dec 2021 on the occasion of world disability day, a school picnic was organized in which the students enjoyed their time participating in some sporting activities like glass passing and tug of war. Some students were also taken for the factory and site visit. As a part of the Positive Parenting Programme series, a session was conducted on ‘Thinking beyond Labelling’ for the parents of the children in the Early Intervention Programme. The topics covered in the session were ‘Activities of Daily Living - How it works, how to use Visual schedules and Solutions to Sensory Issues’ The session was attended by 18 parents. Christmas was celebrated on 20th Dec before the students went home for the winter vacation. The children sang carols and performed a couple of dances. The highlight of the programme was Father Christmas arriving on a motorcycle ringing a bell and carrying a bag of gifts. A ‘selfie’ board was created for the Raphael family for which everyone was invited to take selfies and post them on the board. Siblings and parents were invited to Raphael on 20th December to join the children in playing different games. The children then had lunch with their brothers and sisters. The siblings saw how they could have fun and include their disabled siblings in activities. From 21st to 23rd December the Principal held parents counselling sessions for parents of the residents who were going home. Number of people impacted and how they were helped A total of 98 were impacted by the programmes provided by Raphael. Parents and guardians were also impacted; it was a relief for them when their wards could return to school. Throughout the lockdown period, constant parent counselling was done so that they could work with their children on home-based programmes given by the teacher. They were encouraged to work on long term rehabilitation plans for their children. Many students showed regression of earlier learned skills, especially social and language and communication.

There were no challenges in the utilization of funds and no specific hurdles that had to be overcome. The activity plan for the next six months: The school will reopen on 24th January after the winter vacation. However, this will depend on the Covid situation. In case the students are not able to return to class, sessions will be conducted online. Individual Education Plans will be evaluated and new goals will be selected for the quarter. With Raphael’s Founders' Day in April, students will be busy with preparations; this programme too may be virtual. Inservice training for special educators on “INCLEN-Diagnostic Tool for Autism Spectrum Disorder" and "Developing a positive attitude towards Persons with Disabilities.” Online disability awareness programmes have been planned for government teachers; this may be affected by the election protocol. The positive parenting programme will continue with "Positive Behaviour Support,” “Building communication skills” and "Good practices and Care at Home” for parents. An exhibition in the Resource Room will be organized for ideas on low-cost aids and accessibility.

Priyanshi

15-year-old Priyanshi belongs to Barkot in Uttarkashi district and her family comprises of her parents and siblings. Her father runs a grocery shop and her mother is an Anganwadi worker.

Priyanshi joined Raphael on 29th July in the year 2015. In her initial assessment, it was found that she had a problem of drooling with difficulty in speaking and walking due to cerebral Palsy. At the time of admission, her intelligence quotient was found to be between mild to moderate with developmental delay and she was also found to be partially dependent on daily living skills. According to the Educational assessment, she could name the objects which were familiar to her and was also able to match colours and shapes. In the six years of training so far, she is being trained in academic, self-help and social and communication skills. She was also provided with Physiotherapy sessions.

Presently Priyanshi is in prevocational class and is getting training in functional, academic, social and communication skills along with Physiotherapy sessions.

Despite being a cerebral palsy student, she has indomitable courage and willpower and has demonstrated her talent by attending the IAYP camp in 2019 and where she completed all her tasks well, in the same way, she is expected to do her tasks on her own. When at home, she sweeps and mops her house and washes her clothes and utensils. The same tasks are done by her in Hostel also. She rejoined the hostel in July this year after an ease in some lockdown restrictions.

The long term goal set for Priyanshi is to train her in academics, social, communication, domestic and daily living skills so that she can help in domestic work as well as in her father’s shop. Thus, she will get training in the above skills for another three years.

Since Uttarakhand was in lockdown from April to July 21, no major events were held. Regular activities continued as far as possible for the residents, with only skeletal staff to assist a total of 93 children and young adults with disabilities continued to receive the online intervention.

Funds were utilized as all staff were paid their full salaries. The biggest challenge was in looking after the residents with skeletal staff. Over the next 6 months, we hope to stabilise, continue normal activities.

Impact story: Aditya Gupta12-year-old Aditya lives with his parents and 2 younger sisters in Rudrapur, Uttarakhand. His father runs his own shop and his mother is a homemaker. Initial assessment findings suggested that he has mild to the moderate intellectual disability with development delays and Down syndrome. His speech was unclear and he communicated in one word. He was partially independent in his daily living skills. He was able to tell body parts, common objects and could match shapes and colours. He was admitted to Raphael’s residential Centre on 12 July 2018.Aditya joined the primary group where he was trained in academics, daily living and communication skills. He has learnt to write from A to Z in English and can write 1 to 10 when dictated. Since April his class teacher has been conducting regular online teaching and he has been responding very well and has learnt at a good pace. When given a clue he can write vowels and some consonants. He copies two-letter words. He can make his own bed. He sorts and wash vegetables and puts them in the proper place. He takes interest in dance and yoga with his siblings. During this lockdown period, he has learnt cycling and helps his mother with small household chores. According to his parents, his vocabulary has increased.

The objective of the programme is to generate awareness about Persons with Disability through advocacy; identify and assess children and young adults with intellectual & other developmental disabilities (such as, but not limited to Autism, Cerebral Palsy & Down Syndrome); educate & train children with disabilities to realise their potential and facilitate their rehabilitation in the family and community.

The focus of the training is on functional academics; language and communication skills; and the acquiring of daily living, house-hold, domestic & vocational skills. The emphasis, throughout, is on ‘inclusive’ learning and activity, and to facilitate independent living.

The services include 2 assisted independent living programmes in a simulated ‘home’ environment for young adults and residential dormitories for those below 18 years; a Therapeutic Centre that provides physiotherapy, speech therapy, psychological assessments and counselling, school readiness and early intervention services; a Resource room that provides suggestions, ideas and information for persons with special needs to enable them to participate fully in all aspects of living.

Young adults with disability learning to live independently

The young adults with disability living in the assisted independent living programme made garlands and diyas for Diwali. They celebrate birthdays by inviting 2-3 friends for lunch to a small restaurant near the home. They visit the shops and learn to buy grocery and vegetable and fruit. They also learn to use local transport. On Holi they prepared chips and ‘pakoras.’

Program Update

We provide residential facilities to children and adults with intellectual and associated disability. 25 adults, having been abandoned many years ago by their families. They are with us permanently. 7 young children, who were found abandoned also how live permanently in our hostel. Caregiver working in 3 shifts takes care of the in full day. The young and some of the more able residents attend classes in the day school, learning a variety of skills. The older residents help with domestic shores, gardening and making paper bags. 3 nutritious meals a day, including tea, is provided to all residents. The meals include eggs, milk, fruit and fresh vegetable. All other needs including clothing and medicines are taken for.

(i) On 19 January, senior residents’ custodial group went for a picnic at Maldevta.
(ii) In February, the Social Welfare Department Dehradun organized a meeting in Raphael regarding Voter ID. 23 residents received their voter cards, making them eligible to vote in the forthcoming elections
(iii) On 23 February, the local Red Cross Society held a workshop on giving ‘First Aid’ to children suffering from epilepsy. They gave tips on handling children having epileptic fits and seizures and also gave information about immediate aid to a child who has hurt himself/herself before being taken to the hospital. This was attended by all the staff.
(iv) On 28 March, a campus cleaning campaign was initiated and all students and staff joined hands in this drive to keep the campus clean.

Story from the field

Bharat joined Raphael in the year of 1981 at the age of 11 from Brahampuri leprosy colony, Rishikesh. He had mild cerebral palsy with mild intellectual disability. He could understand everything but could not speak. He expressed his needs through gestures and some small words. He showed the potential to benefit from formal education so he was admitted to Raphael’s Primary school where he studied upto class 4. He could read and write and reads the newspaper every day. He was given vocational training and worked as a helper in the Candle making workshop. Bharat has been progressing steadily. Gradually he was trained to work as an office assistant and placed in the Resource Centre as a helper on a monthly stipend. He does all the office photo copying, sets up everyone’s computer in the morning and carried files from one office to another. In 2016, he was placed as House Parent of Martyn Cottage (Assisted Independent Living) where he is responsible for four young adult males. He has taken in the assignment with dedication, commitment and keeps check on the routine of the cottage. He trains the residents of Martyn Cottage in home living skills. He is independent and does all his work by himself. He has opened a bank account and deposits part of his stipend in the bank independently. Bharat is always very cheerful. He recently cast his vote, for the first time, in the State Legislative Elections held in February 2019. He took an independent decision to vote for his party of choice.