Kalyani Life Institute

Rehabilitation Programme and pre- Vocational work for intellectually impaired persons with autism

Location - B-4/382, PO:- Kalyani, Dt:- Nadia

Email:- [email protected] www.klionline.net Ph:- 9830017416 PROBLEM STATEMENT

In Indian communities, social stigma and superstitious assumptions are still prevalent about children born with autism, cerebral palsy or any other mental or physical retardation. Discrimination against persons with disabilities is above all a human rights violation, and, indeed, it also holds back economic development. Persons with disabilities including autism, cerebral palsy and mentally retarded, who come from the poor BPL families of Rural part can not provide their own minimum standard of living. Peoples from these unprivileged sector can not spare their earning for a persons affected with autism and mentally retarded. Therefore after attaining age of 18 these persons removed from the mainstream of the society. Affordable services, such as personal assistants, peer-counseling services, assertive devices and technology and accessible transport are a prerequisite to enable persons with disabilities to live independently in the community and to participate in economic activities. 1. In Indian communities, social stigma and superstitious assumptions are still prevalent about

children born with autism, cerebral palsy or any

M other mental or physical retardation. Educating

E Indian communities is a challenging task for the

L organization.

B 2. Parents of children with autism are often dissatisfied with their communication with O teachers and society which becomes worse as the

R children age.

P 3. Integrating the child with mainstream

educational institutions and society. E 4. In India, raising a child with ASD puts a H tremendous strain on families due to competing T

commitments and expectations of parents from the child in comparison to the other children like , G academics.

N 5. This initially leads to social withdrawal with I later reintegration into social networks.

N 6. The impact is multidimensional, involving the I personal sphere and the wider community with F negative experiences of discrimination. E 7. The parents actively try responding to these D challenges through a range of approaches with help from existing and new social support networks and health care providers. 8. Professionals from the health, education, and religious sectors have a low awareness of the unique needs of families living with ASD which leads to a considerable economic and emotional burden on families. 9. Diagnosis gets delayed as doctors treat it as mental retardation or schizophrenia or blame bad parenting. 10. Superstitions and social stigma plays a havoc in Indian society for ASD and other mental , disorders particularly in rural India. GEOGRAPHICAL AREA OF WORK

Haringhata, Gede, Majdia, Duttapulia, Ranaghat,

Chakdaha, Jagulia, Haringhata, Kalyani of Nadia,

Bansberia, Chinsurah, Mogra, Bandel of Hooghly,

Kanchrapara, Halisahar, Naihati of 24 Parganas. M i s s i o n

We champion the rights and interests of all people with Autism, Asperger’s, Dyslexia, etc. and aim to provide these individuals and their families with help, support and services that they can access, trust and rely upon, which can make positive difference in their lives. Our mission is Inclusion, Mainstreaming and Segregation for betterment.

V i s i o n

A peaceful and healthy world offering the children and youth suffering from autism an opportunity to join the mainstream of the society.

S h a r e d V a l u e

Every Child and Youth has a right to healthy life.

L e g a l i t y ( r e g i s t r a t i o n )

Registered under Society Act 1961, endorsed with Persons with Disabilities Act, Kalyani Life Institute runs with a regular school plan under National Trust of Ministry of Social Justice and Empowerment, Government of India. What is the issue of concern?

Parents and family of autistic and similar children are dissatisfied with their communication with teachers and also in society. The communication worsens as children age. Parental and professional views always do not match.

On the other side as the child ages without proper intervention the following problems are on rise. Anger and aggression Self injurious Behaviour Meltdowns and tantrums Irritability Non compliance Hyper activity Impulsivity

If not intervened on time it may become near to impossible to include them into the mainstream society. E x e c u t i v e S u m m a r y

Kalyani Life Institute was established on the 26th day of February 2010. The program was first implemented through early intervention with beneficiaries from their initial entry to ten years of age and Daycare has beneficiaries aged above ten years. The toddlers, children, and youth are intervened and taken care of by special educators and psychologists. The beneficiaries are given speech therapy, elementary and advanced educational skills like writing, reading, drawing, singing, dancing, playing. They are life skill education which includes all daily chores like eating, toilet habits, dressing up etc. Other than these they get vocational training, e-learning, physiotherapy and psychological counseling. Parents and family members are also given training and they are allowed to work as volunteers. Individual and family therapy, group counseling are done on a regular basis so that the families can help their children parallel along with the organization at home. Regular community awareness programs are conducted to encourage the community about PwDs.

T h e G a p W e ' r e F i l l i n g

We develop educational, vocational, social and recreational opportunities to their fullest. We grow the awareness and understanding of our community and society to remove the social stigma. We integrate our beneficiaries into the mainstream of society.

W W W . K L I O N L I N E . N E T B A C K G R O U N D

Persons with disabilities have poorer health outcomes, lower education achievements, less economic participation and higher rates of poverty than persons without disabilities. Disability may increase the risk of poverty, and poverty may increase the risk of disability. Lack of support to persons with disabilities may increase the risk of poverty, seeing that efforts to promote development and poverty reduction have not always been adequately inclusive of persons with disabilities. Discrimination against persons with disabilities is above all a human rights violation, and, indeed, it also holds back economic development. When persons with disabilities and their families cannot access essential public services and support mechanisms that open up economic opportunities; when they cannot take part in income-generating activities or when they are prevented from making wider contributions to the lives of their families and communities, there are far- reaching economic, as well as, social consequences. Persons with disabilities including autism, cerebral palsy and mentally retarded, who come from the poor BPL families of Rural part of Nadia, North 24 Parganas and villages of hooghly can not provide their own minimum standard of living. Peoples from these unprivileged sector can not spare their earning for a persons affected with autism and mentally retarded. Therefore after attaining age of 18 these persons removed from the mainstream of the society. Households with a person with a disability experience material hardship, including lack of access to safe water and sanitation and food insecurity 9 and are faced with extra costs due to disability- related expenses.Affordable services, such as personal assistants, peer-counseling services, assistive devices and technology and accessible transport are a prerequisite to enable persons with disabilities to live independently in the community and to participate in economic activities. Magnitude that the project aims to address to the betterment and Mainstream the concerns of Boys women and girls with disabilities throughout plans to implement at the regional levels, and actively involve them in the planning, monitoring and evaluation of development programmes. It will impacted mostly to introduce measures and policies to ensure that persons with disabilities, including women,children, youth, older persons and indigenous persons with disabilities, are protected from poverty and benefit equally from mainstream poverty alleviation, development and wealth-creation programmes, which should contribute to the implementation of disability- inclusive social protection systems and measures in line. DOING GEMBA, DATA COLLECTION AND MEASUREMENT

Kalyani Life Institute carries out it’s primary Gemba at the institute itself. Overall approach is participatory in nature. Impact The improvement of the children is carried out by observation by parents, qualitative testing and analysis by Assessment the special educators , physiotherapists and psychologists. The following qualitative tests are performed by the psychologist to measure the beneficiaries improvement: 1. Developmental Screening Test 2. Vineland Social Maturity Scale 3. Seguin Form Board Test 4. Indian Scale for Assessment of Autism (ISAA) . ANALYSIS OF DATA CONNECTED WITH THE PROBLEMS & DETERMINING POTENTIAL CAUSE(S) USING APPROPRIATE QUALITY TOOLS

The following qualitative tests are performed by the psychologist to measure the beneficiaries improvement: 1. Developmental Screening Test 2. Vineland Social Maturity Scale 3. Seguin Form Board Test 4. Indian Scale for Assessment of Autism (ISAA)

ANALYSIS OF DATA CONNECTED WITH THE PROBLEMS & DETERMINING POTENTIAL CAUSE(S) USING APPROPRIATE QUALITY TOOLS

The qualitative statistical tools and measurement will be made using the data till now within the next step of submission.

VALIDATION OF CAUSES, IDENTIFYING THE ROOT CAUSE AND FOCUSSING ON IT Kalyani Life Institute along with its qualified and highly competent team studies the recent advances and intervention strategies for each and every PwD. For every newcomer family and PwD the root cause of problem is analyzed using advanced technology and tools. The family and parents undergo individual and group counselling. Training is imparted to parents to help their children at home. When the problem is diagnosed and validated, early intervention process is started. CHOOSING THE BEST SOLUTION

KLI deals with Persons with autism, cerebral palsy, ADHD, Down’s syndrome, multiple disabilities and other forms of mental disabilities. For successful implementation each PwD needs his/her own time. Psychologists, special educators, physiotherapist , professional social worker, physiologist and management takes decision for the best possible solution. KLI also takes into account for helping those who are economically and socially disadvantaged. After the intervention process starts regular monitoring is done using scientific tools and methods. Accordingly alternative solutions are brainstormed for the best outcome. Our team always remains updated with recent advances through journals, research papers and other sources for implementation.

PLAN THE CHANGE TRIAL IMPLEMENTATION OF GENERATE POTENTIAL BEST SOLUTION FOR SOLUTIONS VALIDATION

Educate the families S.M.A.R.T analysis is used This area is not and parents on Laws, for the contingency applicable for our Policies, Human Rights planning. Though till beneficiary group as now we have not used and opportunities every child with Gantt chart but are available for their mental disabilities is planning to do soon, so children. that we can submit it unique thereby every during your next step in solution is unique. processing. Same way every parent /family is unique depending on their economic, social, spiritual and educational Outlook. O b j e c t i v e s

For differently abled toddlers, children and youth, this organization do it's level best to support the social security, mental trauma, and trivial family issues that are common to these ill-fated families.

The organization acts as a welfare family where parents of these persons with disabilities can find a mental shelter forever and grow awareness of the laws and human rights issues associated with their children.

W W W . K L I O N L I N E . N E T C How has this need been determined? With the passing due to biological and environmental conditions autism and related problems are on rapid rise. Beneficiaries are referred to Kalyani Life Institute by doctors, psychologists, psychiatrists and schools. We have many beneficiaries from local communities where people are unable to afford even two square meals daily. KLI tries its level best to help the beneficiaries who come from these families. Due to lack of sufficient funds we are unable to meet this rising requirement. Children and youth from distant places regularly come to KLI for special education.Children from families where both the parented need to work are facing problem. KLI wishes to build a home and needs more infrastructural facilities for this.

Has this issue been helped or addressed previously?

Yes, Persons with Disabilities have undergone special education, dance and music therapy, sensory activities, occupational therapy, applied behavior analysis, physiotherapy and speech therapy by trained therapists and pathologists and educators. Physiological, educational and psychological development of PWD with autism, cerebral palsy and multiple disabilities have been assessed periodically by distinguished board members consists of physician, mentor and psychologist. For differently abled babies, children and youth, this Milestone organization do its level best of support for social security, mental trauma and trivial ONE family issues that are common to these ill-fated SUPPORT FOR SOCIAL SECURITY families.

The organization acts as a welfare family where parents of Milestone these persons with disabilities can find a mental shelter for TWO ever. WELFARE FAMILY

To support each individual to access Milestone and develop educational, vocational, THREE social and recreational opportunities.

DEVELOP EDUCATION

To grow the awareness and understanding within our community Milestone and society to remove the social stigma for Autism. FOUR

REMOVE THE SOCIAL STIGMA

W W W . K L I O N L I N E . N E T WHAT ARE we TRYING TO ACCOMPLISH?

For differently abled toddlers, children and youth, this organization does its level best to support the social security, mental trauma, and trivial family issues that are common to these ill-fated families. The organization acts as a welfare family where parents of these persons with disabilities can find a mental shelter forever. To support each individual to access and develop his/her educational, vocational, social and recreational opportunities to their fullest. To grow the awareness and understanding of our community and society to remove the social stigma. To integrate our beneficiaries into the mainstream of society. Kalyani life Institute has received several awards and nominations for its work in the field of Disability. KLI is referred by doctors and other stakeholders to parents and families with PwDs. Since the Programme initiation, we have been successful in integrating our beneficiaries into mainstream educational institutions and society to live a life of dignity. Our main achievement is highly-satisfied, confident and smiling parents and family members of our beneficiaries. Till now all our projects are finished within the time span and present projects are running on time. THEMATIC AREA OF WORK

The Kalyani Life Institution currently provides day care to Seventy Five children with developmental disabilities, including cerebral palsy, autism, mentally retarded and Down’s syndrome. The program includes basic social and life-skills training, and fundamental education focusing on counting and reading skills. Impact Assessment

Improvement in Developmental Quotient

Improvement in Social Quotient Impact Assessment

ale Sc ity ur at M ial oc d S lan ne Vi

t en sm ses As m tis Au of rd da an St ian Ind No of Beneficiaries over the year

100

0 6 6 7 7 7 7 8 8 1 1 1 1 1 1 1 1 : p c r n p c r n e e a u e e a u S D M J S D M J

Diagnosis As on June 2018

Other 14%

Downs 5% Autism 38% CP 9%

MR 34% As on June 2018 Male-Female Ratio

Girls 35%

Boys 65%

Age distribution : 15 nos

10 nos

5 nos

0 nos -5 0 5 0 0 + 2 -1 -1 -2 -3 0 5 0 5 0 3 1 1 2 Budget and Project Sponsors

WORKING BUDGET:

15,00,000 INR

25L

20L

15L

10L

0L 2011-12 2012-13 2013-14 2014-15 2015-16 2016-17 2017-18 Sponsor

15L 10L 5L 0L Bank Interest Indv Donation Inst Donation National Trust

WWW.KLIONLINE.NET PROJECT SUMMARY AND FUTURE PLANS

1. Open a residential home for beneficiaries coming from distant places, Nuclear families and working parents. 2. Open new avenues for the new type of vocational training programs to make the PwD self-sufficient. 3. Open branches of Kalyani Life Institute in other states of India and also in other districts of West Bengal. 4. Increase number of beneficiaries to be ready for mainstream. 5. Reach out to the underprivileged communities for awareness and help them to help their PwDs Family members. Approximate Budget of the Proposed Program (In INR)

Project name - Rehabilitation, Vocational work for differently-abled

Therapy Budget (In INR)

Year 1 Year 2 Year 3 Sl Heads of Expenditure Own Own Own No Per annum Project grant Per annum Project grant Per annum Project grant Contribution Contribution Contribution expenditure (85%) expenditure (85%) expenditure (85%) (15%) (15%) (15%)

1 Speech Therapist 300000 255000 38250 330000 280500 42075 363000 308550 46283

2 Occupational Therapist 300000 255000 38250 330000 280500 42075 363000 308550 46283

3 Physio Therapist 216000 183600 27540 237600 201960 30294 261360 222156 33323

4 Psychologist 300000 255000 38250 330000 280500 42075 363000 308550 46283

5 Vocational Educator 240000 204000 30600 264000 224400 33660 290400 246840 37026

Dance and movement 6 240000 204000 30600 264000 224400 33660 290400 246840 37026 Thrapist

7 Art and Craft Therapist 216000 183600 27540 237600 201960 30294 261360 222156 33323

8 Special Educator (Four Nos) 960000 816000 122400 1056000 897600 134640 1161600 987360 148104

9 Care Giver (Four Nos) 768000 652800 97920 844800 718080 107712 929280 789888 118483

10 Aaya (Six Nos) 864000 734400 110160 950400 807840 121176 1045440 888624 133294

11 Computer Trainer 180000 153000 22950 198000 168300 25245 217800 185130 27770

Total 4584000 3896400 584460 5042400 4286040 642906 5546640 4714644 707197 Administrative Budget (In INR)

Year 1 Year 2 Year 3 Sl Own Own Own Heads of Expenditure Per annum Project grant Per annum Project grant Per annum Project grant No Contribution Contribution Contribution expenditure (85%) expenditure (85%) expenditure (85%) (15%) (15%) (15%) 1 Co-ordinator 360000 306000 45900 396000 336600 50490 435600 370260 55539

2 Night Guard 144000 122400 18360 158400 134640 20196 174240 148104 22216

3 Internet Charge 30000 25500 3825 33000 28050 4208 36300 30855 4628

4 Electric Charge 48000 40800 6120 52800 44880 6732 58080 49368 7405

5 Sweeper 60000 51000 7650 66000 56100 8415 72600 61710 9257

6 Room Rent 240000 204000 30600 264000 224400 33660 290400 246840 37026 Vehicle (For transportation 7 of disabled person) (Three 540000 459000 68850 594000 504900 75735 653400 555390 83309 nos) Total 1422000 1208700 181305 1564200 1329570 199436 1720620 1462527 219379

% of Administrative Budget 24 24 24 24 24 24 24 24 24

Grand Total 6006000 5105100 765765 6606600 5615610 842342 7267260 6177171 926576

First year project cost Rs 6006000 Rupees Sixty lakhs Six thousand only First Year Grant required Rs 5105100 Rupees fifty one lakhs five thousand one hundred only First Year Own contribution Rs 765765 Rupees seven lakhs sixty five thousand seven hundred sixty five only Second year project cost Rs 6606600 Rupees sixty six lakhs six thousand six hundred only Second Year Grant required Rs 5615610 Rupees fifty six lakhs fifteen thousand six hundred ten only Second Year Own Rs 842341.5 Rupees eight lakhs forty two thousand three hundred forty two only contribution Third year project cost Rs 7267260 Rupees seventy two lakhs sixty seven thousand two hundred sixty only Third Year Grant required Rs 6177171 Rupees sixty one lakhs seventy seven thousand one hundred seventy one only Third Year Own contribution Rs 926575 Rupees nine lakhs twenty six thousand five hundred seventy six only Total Project Cost Rs 19879860 Rupees One crores ninety eight lakhs seventy nine thousand eight hundred sixty only Grant required Rs 16897881 Rupees One crores sixty eight lakhs ninety seven thousand eight hundred eighty one only Own contribution Rs 2534682 Rupees Twenty five lakhs thirty four thousand six hundred eighty two only