Introduction
Throughout the world, physical disability affects millions of people. In developing countries where access to medical care is often limited, the plight of the physically disabled is particularly harrowing. In India, an estimated 3% of the population is afflicted with physical disability amounting to approximately 30 million physically handicapped people in the nation. 1% of the nation or 10 million people suffer from locomotor disabilities, out of which approximately 55% of cases can be attributed to polio.
Those who have the most difficulty accessing medical and rehabilitation care, education and vocational opportunities often come from the rural parts of the country. Due to their lack of mobility, many families choose not to enroll their physically handicapped children in school. Also, due to the lack of facilities in rural areas, children are not properly rehabilitated and are unable to improve their physical functioning. Therefore, these uneducated and dependent people become a burden to their family and to society. In addition, there are social stigmas associated with the physically handicapped. In India, superstitions about disability such as "it is due to a curse or it is because the parents didn't do the correct prayers" are still present in rural areas. In some instances, families or rural communities embarrassed by the appearance of disabled children restrict their integration into society. In more extreme cases, the family and community abuse their disabled members emotionally and physically. Therefore, it is important to study the condition and social environment of the disabled living in rural India.
Some NGOs in India have taken up the task of rehabilitating,
educating and training disabled people. Amar Seva Sangam is one such organization
that serves the needs of the disabled in the rural region of Tirunelveli
district of the state of Tamil Nadu. Amar Seva Sangam (ASSA) has a twofold
approach to serving the disabled Ð in house rehabilitation and community
outreach.
The in house rehabilitation facilities are situated in a
small village called Ayikudy, where ASSA owns a 26-acre land area. The
facilities include an integrated elementary and middle school, a vocational
training institute for the disabled, a medical evaluation & rehabilitation
center and an orthotics (caliper) workshop, as
well as a spastics center for educating the mentally challenged and living
accommodations for disabled students, some staff members and volunteers.
As part of the community outreach, ASSA has community physical and mental rehabilitation workers who rehabilitate children and adults living in poverty in their own homes as well as social workers who promote awareness about disability issues amongst the public, organize disabled self-help groups and assist the disabled with social issues including education and vocational training.
One of the SangamÕs major
"in-house" activities called "Home Care" is to provide
accommodations, rehabilitation and education for over 100 disabled
children. Children with physical
disabilities who are living in poverty in the rural areas of the district are
admitted into the ASSA's "Home for the Handicapped," where they are
provided with accessible daily living facilities, physical rehabilitation
including referrals for free surgery, an integrated school education and
sometimes vocational training (in computers, book-making, tailoring, or typing)
many of which they might find difficult to get in their rural hometowns. Upon admission to home care, the
children are usually unable to function fully in their village. Their stay at
ASSA should rehabilitate them to a level where they can function independently
in their home, at which time they then "graduate" or are discharged
back to their family where it is hoped they will continue their education or
begin working.
Amar Seva Sangam continues the support of the children that
are graduated to their homes through a program called Village Based
Rehabilitation (VBR). Since the children returning home are usually returning
to a poverty stricken household, the VBR-1 program assists students by
providing them with their school fees, notebooks, textbooks and school
uniforms. These students are also invited to ASSA's in-house facilities twice a
year during their school holidays for a period of 10-15 days where they are
given physical rehabilitation and exercises, along with adjustments to their
appliances such as prosthetic (caliper) devices
and crutches. For those students who begin working or discontinue their
schooling, they are put under the VBR-2 program where they are only provided
with the biyearly rehabilitation visits to ASSA. (There is also VBR-3, which
assists persons who NEVER lived at the Sangam, through financial assistance and
home visits by social workers and physiotherapists.)
ASSA's "Home Care" provides students with a
protective environment where all the facilities for the handicapped are easily
accessible such as disabled-friendly bathrooms, ramps for wheelchairs and
everyone is provided with nutritious meals. It also provides a regimented
environment where they are required to exercise and study daily and are
provided with tutoring for class subjects and opportunities for cultural and
sports extracurricular activities. After rehabilitation, children are thrown from
this nurturing environment into the real world where the conveniences of
disabled friendly facilities may not exist, especially for the poverty
stricken. Some questions emerge from this migration. After graduating to VBR, do these children maintain their
improved physical functioning? Do they continue their educational pursuits? Are
they well integrated into their community and what are the attitudes of the
rural community towards the disabled?
The purpose of the study is to examine (1) the impact of
"Home Care" activities and (2) the functioning of children and youth
enrolled in VBR 1 and VBR 2 by examining (a) their living and social
environment, (b) whether they are maintaining the physical functions they have
gained, (c) whether they are maintaining the educational accomplishments and
extracurricular participation they had at ASSA's "home care", (d)
their current educational and/or occupational endeavors and (e) how well the
participants have integrated into daily rural life after staying at Amar Seva
Sangam.
The number of students who were in "home care" and
who are currently in "village based rehabilitation 1 and 2" totals 60
people. Out of this, a random sample of 36 subjects was taken and information
about these students was collected.
To measure the impact of ASSA's home care activities, the
records of the children who were previously under home care and are now under
VBR 1 and 2 were obtained. To obtain information that wasn't available or that
was missing in the records, "housemothers" - the ladies who act as
caregivers of the disabled children during "home care" were
interviewed. By these two methods, information about the child's home care was
obtained including how the child was referred to ASSA, the child's mobility
upon admission and mobility upon discharge and independence of ADL upon
admission and upon discharge.
All the information about the functioning of children and
youth enrolled in VBR 1 and VBR 2, were ascertained by visiting the subjects at
their homes or their schools and interviewing them and their families, if
present.
(1) Referrals
The impact of Amar Seva Sangam is
profound, however, this impact would not exist if people did not know about the
Sangam and its mission. Therefore,
it is important to examine by what method children are being referred to the
Sangam. The study found that the
majority of students admitted into ASSA heard about it through word of
mouth. This figure states that
most of the villagers in the Tirunelveli district of Tamil Nadu are aware of
the Sangam's activities. 31% of
students were referred to ASSA through a field social worker, meaning that the
Sangam's staff is making a significant impact in regards to identifying and
referring disabled children. The
remaining 11% knew about ASSA as they had a friend there.
(2) Mobility

Upon admission to Amar Seva Sangam,
students were at various stages of mobility due to their disability. Crawling, the most hindering form of
mobility was also found to be the most predominant. 71% of students were
crawling before their admission into Amar Seva Sangam. 3% of students were walking with one
leg (or hopping) while 6% would walk using a hand on knee gait (using their
hand to lift the leg). Only 20%
could walk independently, and some of these students could not walk for long
distances.
Upon examining the students' mobility upon discharge to
their own homes, it was found that the amount of students that could walk
completely independently had increased by more than 70%. All students (100%) were able to walk
independently when they were discharged to VBR.
(3) Activities of Daily Living
Activities of daily living (ADL) involve activities that
constitute everyday life, such as eating, going to the bathroom, changing,
bathing and going to school. To
measure the impact of "home care" rehabilitation, it is of extreme
importance to measure the level of independence that children reached in regards
to their ADL, as these are necessary tools for proper integration into
society. The participants'
housemothers were questioned as to the subjects' level of ADL independence upon
their admission to "home care" and then upon their discharge to VBR. It was found that across every
category, there was an increase in the number of students who were independent
in their daily living activities. All of the categories, except one, showed
that every participant in "home care" became completely independent
upon their discharge. This means
that all the students who were previously unable to bath, change, eat or use
the bathroom independently learned how to do so during their stay at Amar Seva
Sangam.
The one exception, going to school,
although not showing a full recovery, still managed to show a large
improvement. Before coming to ASSA, only 40% of students could walk to school
independently. However, upon discharge, 94% of students could walk to school on
their own, while the other 6% who could not walk, still traveled independently
by tricycle or wheelchair.
Once discharged from home care to VBR, the disabled students
are faced with the task of adjusting to their new homes in the rural areas,
which are often poverty stricken. By interviewing the VBR participants it was
determined that the average monthly income for the entire household of the
disabled participant was 1908.21 Indian rupees ($42.41 US). The average number of family members
living in the house was 5 people.
Family income ranged broadly from 400 Indian rupees ($8.89 US) a month
to 8000 Indian rupees ($177.78 US) a month. The national poverty line in India
has been established at 2000 rupees ($44.44 US) or less per month. 75 percent of the study population was
below the poverty line, 14 % earned between 2001 ($44.46 US) to 2500 ($55.55
US) rupees and 11% earned above 5000 rupees ($111.11 US). Some of the different types of jobs
held by family members are day labourers or coolies (who find available labour
work on a daily basis), beedi rollers (beedies are a popular type of cigarette
in India), farmers, shop owners, cloth making, sawmill work and automotive
work. The households that earned
the most money had a father who worked in the railway industry earning 5000
rupees per month ($111.11 US), a teacher earning 8000 rupees per month ($177.78
US), and a political representative, also earning 8000 rupees per month.
(Though it is quite evident that most of the families are poor, it is important
to note that people in these households in general had enough to eat and were
not malnourished.)

The houses that the VBR participants lived in were mostly 2
room concrete structures with an attached kitchen area. Within ASSA, the
bathrooms were readily accessible to disabled students, but outside "home
care," it was found that some might have had difficultly going to the
bathroom. Forty-nine percent of
the participants used an attached bathroom in their house, forty-five percent
of the participants used an open or outdoor toilet (which means they would go
outside in the field or side streets), and six percent used an outside-attached
toilet (an indoor toilet within another building).

Out of the study group, six girls out of ten had an indoor
bathroom while the other four girls used an outdoor, open bathroom. In the interview, when asked what
difficulties if any they faced, three girls out of the four reported that using
the open, outdoor bathroom is a difficulty, while none of the males cited using
the bathroom as a difficulty. Seven out of 36 families had bathrooms built
specifically for their disabled child.
It is worth mentioning that all seven families were either below the
poverty line or just above it, one family only made 500 rupees a month. This shows that regardless of their
status, the families aim to help the functioning of their disabled child.
(2) Physical Functioning
Within "Home Care," the children's lives are
regimented and students must use their calipers and perform physiotherapeutic
exercises. However, outside of the
Sangam, it becomes the students' own responsibility to maintain or increase
their physical mobility. 35 of the
36 students interviewed have maintained their ability to walk independently, while
only 1 person out of the 36 reported that she needed to hold on to someone for
support while walking.

When asked if their ability to walk and move around had
improved, stayed the same or worsened; 39% of those interviewed said that their
mobility had improved, while 55% said it had stayed the same and only 6% said
their mobility had worsened.

Of those people whose mobility had decreased, one was using
their calipers (orthotics) and crutches regularly while the other were
not. One was a female who wasn't
wearing her calipers because she was embarrassed about being seen in public
with calipers and because of the weight of the calipers. She was also the one
individual who reported along with her family that she could not walk
independently and could only walk a very short distance before falling. The second student whose mobility
worsened was a male. His mobility decreased because the roads near his home are
in disrepair and he has a difficult time walking on them, but he still
manages.
During their rehabilitation in home care, students are
assessed by physiatrists (physical and rehabilitation specialist doctors) and
physiotherapists and are referred for free surgery and given free appliances
such as calipers (orthotics), specialized shoes, wheelchairs, etc. While in
VBR, students are given the opportunity to get their appliances fixed or get
new appliances free of charge. The proper usage of appliances such as calipers
are very important, as it prevents further deformities such as scoliosis and
improves walking ability and physical functioning. For those provided with
appliances, it is expected they use it on a daily basis in order to maintain
their physical functioning. Seventy percent of those interviewed used their
appliances on a daily basis.
Twenty-two percent were irregularly using their appliances. The other eight percent did not need
any appliances to assist them with walking. Reasons that were cited for not using appliances were that
they caused pain, bruises, that calipers were heavy, that their appearance was
embarrassing, that they could not climb stairs with calipers on and that they
needed to repair their appliances, but they hadn't come to ASSA to get it fixed
yet.

(c) Exercises
Another important variable in preserving physical
functioning for the disabled is performing prescribed exercises. The health
care workers at ASSA have taught all the children exercises they need to do for
strengthening of useable limbs and muscles and prevention of deformities.
During, "home care", due to the presence of physiotherapists and
housemothers ensuring daily exercise, 35 out of 36 or 97% of children did
exercises daily, while only 1 out of 36 did it once in a while. When asked how often they do exercises
now that they are in their own homes, 53% said they never do exercises, while
30% said they do it daily and 17% said they do it once in a while.

(d) Activities of Daily Living
One of the most important measures of physical functioning
is whether one can perform the activities of daily living. After administering
the questionnaire it was determined that currently at their own homes, 100% of
the participants were bathing independently, 100% were eating independently,
100% were changing their clothes independently and 94% or 34 out of 36 were
attending to their toileting needs independently. Of the 2 who said they needed
assistance for going to the bathroom, one was male and he stated that he needed
to use an outdoor field for his needs. However, he could not defecate with his
calipers on, but he needed his calipers to walk to the field. Therefore, he was
carried to the field. (It should also be noted that although 100% of the
participants could bathe independently, many of the participants said that
because of their disability and because they don't have running water in their
houses, they need water brought to them.)
(e) Conclusion
The fact that almost all the participants are still walking
independently, that mobility has improved or stayed the same in the majority of
people and that almost all of the participants are able to perform their ADLs
independently, shows that the disabled rehabilitated by ASSA are maintaining
their level physical functioning after being sent to their home.
The fact that the majority of participants (70%) are still
using their appliances regularly is a positive indicator. To encourage the
other 22% to use their appliances appropriately, new technology calipers that
are light weight and cosmetic to improve appearance can be suggested. Also, VBR
participants and their family should be constantly educated on the importance
of regular appliance use during social worker visits and during their biannual
visit to ASSA.
The fact that 53% of the VBR students never do exercises is
a potentially harmful indicator. Physiotherapists should ensure that both
children and their families are properly taught the exercises that the disabled
students need to perform and encouraged to do it daily. Also, children can be
taught and encouraged to do exercises independently while at "home
care" without the physiotherapists or housemothers' assistance, so that
they can transfer this practice when they are in their own homes. Also, ASSA's
advent of self-help groups (SHG's) which some VBR students are part of, can act
as a central meeting place for participants to get together and do exercises as
a group. For the cases where doing exercises are very imperative, ASSA could
have physiotherapists, along with social workers, doing house visits.
(3) Home Care vs. VBR - Comparison of Educational
Performance and Extracurricular Involvement
(a) Educational Performance
Grades are a very important part of any student's life. For
many, it is necessary to maintain a good grade average for acceptance into
college, and thereafter a good job.
Therefore, it is important to see if moving from home care to VBR will
have a great affect on how a student performs. Fifty-two percent of the studentsÕ grades remained the same
from ASSA and VBR, thirty-five percent of students grades decreased and
thirteen percent had increased.

A few students cited the lack of opportunities to get
tuition or tutoring as the reason for their decrease in marks. Other possible
factors could be the increase of workload in higher standards, lack of regimented
study times and difficulties with a new school without handicapped facilities
(for example, one student said that they have to go upstairs for classes and
therefore arrives late for classes).
(b) Extracurricular Activities

Students at the ASSA are encouraged
to participate in extra-curricular activities including sports such as cricket,
kabadi (a game similar to tag), tricycle racing; Indian cultural activities
such as Thirukural (recitation of Tamil literature), folk songs and other activities
such as debates, dramas, etc.
During home care, 88% of students participated in
extra-curricular activities. It was found that upon leaving Òhome care,Ó the
number of students participating in extra-curricular activities dropped to 53%.
Children doing sports dropped from 73% to 21%, people doing Indian cultural
activities dropped from 23% to 3% and those doing other extracurricular
activities dropped from 21% to 11%.
Possible factors for the drop are: the opportunities to participate in
the same activities they did in ASSA are not available, the increase of
standards may challenge some students to do both extra-curricular activities
and study, and the encouragement to participate in such activities may not be
present.
(c) Conclusion
There is a decrease in both the educational achievements and
extracurricular participation of students from home care to VBR. With the
formation of self-help groups (SHGs) by ASSA, it can be encouraged for the VBR
students to participate in productive extracurricular activities such as
disability awareness programs, assisting with the running of SHG's (a few VBR
students are already participating in such SHG activities and find it very
positive experience). SHG's can act as a focus for other extracurricular
activities such as sports, games, art classes, yoga, etc. They can also act as
a focus for arranging private tuition (tutoring), so that students can be
assisted with their weak subjects and marks could be improved.
(4) Occupational and Educational Pursuits
To consider rehabilitation fruitful, it is imperative for
disabled people to be functional members of society and have the potential to
be financially independent. Continuing education and/or having a job are two
statuses that indicate the potential for financial independence. 31 out of the
36 (86%) subjects were pursuing some sort of educational endeavor with 21 (57%)
in school, 6 (17%) in college, 2 (6%) studying in a technical institute and 2
(6%) undergoing vocational training. 2 people (6%) were employed and 3 people
were currently not involved in any education or job. (It should be noted
that this is a random sample of 36 out of the 60 people who are in VBR 1 or 2;
it may or may not accurately reflect the percentages of all the VBR students.
Also, 7 of the students who studied in home care are now undergoing vocational
training at ASSA and are now classified as DYT's or Disabled Youth Trainees and
are not included in this study.)

(a) Attending School
For those who are currently in school, their most recent end
of year final marks were recorded and classified according to the scale:
Excellent for marks greater than 90%, Good for 80% to 90%, Fair for 60% to 80%
and Poor for below 60%. According to this scale, the majority of students are
doing poorly or fair (63% of students are doing poorly, 21% are doing fair),
while only 5% are doing well and 11% are doing excellent. With this distribution of marks and the
high cost of post secondary education (see below), it is unlikely that many of
these children will be able to pursue college or even technical education.

(b) Attending College or Technical School
Of the 6 students going to college, 2 are males taking a
Bachelor in Commerce (B.Com) in their 2nd year of a 3-year course.
After completion of this course, one wants to do charter accounting and the
other wants to do computer training. College tuition for them is approximately
Rs.10000/year each ($222 US). 3 of the 6 students are females who are studying
at Parashakti College in Courtallam. They are taking a B.Sc. in Math, BA in
Tamil and BA in Physics. College fees are approximately Rs.8000/year ($177 US)
each. All three want to pursue teacher training. The final student is going to
begin his studies in pharmacy for which annual fees will be approximately Rs.15000
($333 US).
Out of the two male students undergoing technical education,
one is studying electronics and the other, factory parts fitting. For both of
them, annual education fees are approximately Rs.25000 ($555 US). For all these
8 students, the annual income in their household is below the poverty line
(below Rs.24000/year). ASSA sponsors approximately Rs.1800 ($40 US) per year of
the education costs for each of these students. For some of the college going
students, ASSA sponsors more. Extra funding is done on a case-by-case
examination basis. As it can easily be seen, post secondary education expenses
are a huge burden to the families and many are attempting to get scholarships
and borrow or ask for money from relatives and friends to meet the expenses.
(c) Undergoing Vocational Training
The 2 participants in the study who are currently undergoing
vocational training both studied only up to the 10th Standard or
Grade 10 (please note that in India, formal education is completed at the 10th
Standard, with the 11th and 12th of high school
being optional for students interested in university). One failed out of high
school and the other got excellent marks but dropped out of school because of
difficulty he faced in taking the bus while carrying his books to school. The
latter is learning tailoring at a store owned by his uncle. He hopes to buy his
own equipment and start his own store. The other subject has taken driving
lessons to become a professional driver, however he does not have money to pay for
his licensing exam.
(d) Employed
Both of the participants who are currently working only
studied up to 8th Standard and received failing marks in school. One person
received vocational training in cot, chair and basket making and he now does
contract work and earns Rs.500 per month. He wants to start his own business
selling cots and chairs and applied for a bank loan for this purpose, however
was rejected. The other subject failed the 9th Standard twice and currently
works at an automobile financing office, earning Rs.500/month. He uses the
money to support his family, which is in a financial crisis. He hopes to study
financing at the office. Since it is a private company, the manager does not
require him to have an education, as long as he is literate.
(e) Doing Nothing
Out of the students that are currently neither working nor
attending school, 2 are females and one is male. One of the females, one has
completed 12th Standard but failed Math and was therefore unable to graduate.
She is currently getting private tutoring in math and hopes to rewrite the exam
and pass it. She is not sure about her future plans, but is considering going
to college and/or taking a computer training course. The other female
discontinued school after the 8th Standard with fair marks. The reason the
family cites for the drop is that to attend 9th Standard, she has to go to a
new school further away from her house and too difficult for her to be
transported there. From the interview with her and the family, it is evident that
there is a lack of interest on the family's part to take the effort to send her
to school. Though she may be interested in going to school, she seems to lack
confidence and self-esteem. The male student that is not attending school
completed the 10th Standard. Though he is constantly encouraged by the social
workers from ASSA and his older brother to rejoin school, he lacks the interest
and motivation.
(f) Future Plans
When asked what future plans they wish to pursue, 25 out of
36 or 69% of the study group cited professions, such as teachers, doctors,
lawyers or accountants, that require college education. 4 out of 36 said they
wanted to start their own business; 6 out of 36 wanted to pursue a profession
that required vocational training such as computers, and tailoring and 1 person
who had dropped out of school simply said her future plan was to return to
school.
(g) Conclusions
It is encouraging that the majority of the study group is
engaged in productive work, whether school, training or job. However, with the
cost of post secondary education being high and the chances that these students
will get scholarships at government colleges being low, because of poor marks
most students might not be able to attend college. Though an education has
given them literacy, it does not greatly advance these disabled youths
likelihood of gaining employment. With more and more VBR 1 and 2 students
finishing their schooling, the need to train them in a trade in order to gain
employment becomes important. Encouraging and setting up the infrastructure for
VBR students to get training in ASSA's existing vocational facilities
(tailoring, toy making, book making & binding, computer training, typing
training) could be done. Also, investment of money into setting up new
vocational training facilities in vocations that can yield jobs for the
disabled, can be another direction for ASSA. Another option is to help fund
their vocational training at outside centers, or provide loans for such
purposes. Also, though it is encouraging that the VBR participants have high
goals and want to pursue college education, it is important for social workers
and others at ASSA to counsel them properly about realistic occupational
pursuits. It may be wise to encourage students that are failing or doing
poorly, into the vocational line at an even earlier stage.
For those who are undergoing vocational training and even
for those who are currently working, the major obstacle of finding sustainable
employment still exists. ASSA
could play a leading role in encouraging self-employment by giving small
business loans to vocationally trained disabled students. ASSA could also set
up a job placement or co-op program for the disabled where they could work with
companies and encourage them to hire trained disabled candidates. Another
possibility is setting up a factory within ASSA's premises that produces
various goods such as soaps, candles, etc. where the disabled are hired to work
and profits from such ventures could fund ASSA's charitable programs.
For the VBR students in college, fees are a serious burden.
Such a burden may prevent exceptional students from pursuing higher education.
Currently, ASSA helps college-going students by funding a small portion of
their education and helping them apply for government and other scholarships.
However, many of these families are still left to raise a lot of funs to put
their children through college. With a few exceptional VBR students (11%)
currently in school, it may be worthwhile for ASSA to set up a
"scholarship fund" or a student loan program and specifically raise
money to fund students who have shown dedication, hard work and ambition and
who are not able to fund their education through other scholarships and means.
(ASSA is already informally doing this by giving more money to deserving
students in college on a case-by-case basis. If a formal college-funding
program is made, funds may be more easily mobilized.)
For those who have discontinued school and who are not
working or getting vocationally trained, ASSA's social workers should work
closely with the student and their families and find out where these students'
interests and strengths lie and try to determine a path that can lead them to
success. It is particularly important to educate parents about the importance
of allowing their children to pursue their educational and vocational goals,
because sometimes it may be the parents that are disinterested in their
disabled child's education.
It is one thing to rehabilitate the disabled, but unless
their community accepts their differences, the individual's confidence can
never be up to par. Therefore, the
participants were questioned on how their community responds to their
disability. They were asked whether they were teased or put down because of
their disability or assisted in their schools and villages. The results showed that overall most
community members (85%) accepted and positively responded to the disabled. These
subjects stated that people in their school and village were for the most part
very helpful to them. Only 3% of subjects in the study have been treated
negatively by others because of their disability. 9% said their community was ambiguous to them, neither
treating them negatively nor positively, while the remaining 3% have
experienced both sides.

(b) Coping with Social Challenges
It is also important for the subjects to respond confidently
if faced with a negative attitude by the community. When asked how they would
respond if someone expressed a negative view about their disability,
significant coping differences were found between males and females. Of males dealing with negativity, it was
discovered that most (50%) would do nothing, while 33% would stand up for
themselves and 17% would inform an authority figure. The majority of females (49%) would respond by crying, while
38% would do nothing and only a small percentage (13%) would stand up for
themselves.


There is a difference in the way males and females respond
to negative comments; while the majority of males would do nothing the majority
of females would cry. Crying by
itself is not necessarily a bad reaction but in some cases it is accompanied
with thoughts of depression like not wanting to leave the house.
This could be an indicator that girls need, more than boys,
to participate in activities that will increase their self worth and
confidence. In fact many students
reported that their confidence has increased upon graduation from ASSA. One student said, "Before coming
to ASSA, if people made fun of my disability, I would cry. Now, because of my calipers, I am able
to stand up and see people face to face."
(c) Interpersonal Relationships
A good measure of the disabled youth's integration into
society is his/her interpersonal relationships. As the subjects in the study
were mostly of school-going age, the amount of friends, and type of friends the
subject has is a strong measure of interpersonal relationships. As males and females tend to differ in
social relationships, the data was separated according to gender.


In the majority of cases, both males (79%) and females (67%)
were found to have friends. These friends were mostly non-disabled which not
only shows that the disabled students have integrated well, but also that their
non-disabled peers accept them.
However, in females, a surprisingly high number, 33% were found not to
have any friends. Also, the
interviews revealed that 50% of the disabled females in the study never left
the house other than going to school due to embarrassment about their
disability or restriction by their parents. Such embarrassment or restriction
was not seen in the male population studied. In one case, an 18-year-old female
said she takes an awkward side path to school instead of the main road, because
she doesn't want to be seen if she accidentally falls. In two cases, the
disabled female didnÕt go out with her family even when the rest of the family
went out. In one case, a girl did not attend her elder sisters wedding which
was in a nearby town to where the family lived. Reasons the families cited for
this sort of restriction included concern about the child falling and
difficulty with mobility. However, since such reasons did not prevent male
children from going out, one reason could be there is a greater social stigma
against disabled females or parents being overly protective of their disabled
female children. It was also evident that some of the disabled females were
very quiet and introverted. Whether this is a natural personality trait or was
caused by their disability is unknown.
Furthermore the social stigmas surrounding women and social interaction
are quite high in India. Whether the reason that the girls tend to be shy and
less friendly is due to disability or because they are female cannot be
determined.
(d) Transportation
Another important measure of integration into society for
the disabled is whether they are able to use the facilities available to
society at large. Since the vast majority of people don't have their own
vehicles, an important measure of integration is how disabled are able to
transport themselves. The study group was asked how they transported themselves
to school or work. 56% use the most inexpensive form of travel Ð either walking
or using their tricycle. 32% use public transportation, a relatively
inexpensive form of travel. 12% use more expensive forms of travel such as an
auto rickshaw or school van, which ranges from Rs.500 ($10 US) to Rs.600 ($12
US) per month.

(e) Fraud:
There are many stories of disabled people being taken
advantage of in small communities by "conmen" who promise to get them
special disability cards, government pensions, etc. in exchange for collecting
a fee. Once the fee is paid, these thieves disappear without providing them
with any of the things they promised. Study participants and their families
were asked if anyone had approached them in with such a claim. Only one out of
thirty six participants' family was approached and they refused, saying that
ASSA is already helping them. This
suggests that ASSA's presence protects the disabled from such
"conmen" in this region of the country.
(f)
Helpfulness to Other Disabled People
To examine whether the VBR participants had inculcated any
of the service mentality of ASSA, they were asked what they would do if they
saw another disabled person, in particular a disabled child or student. The
majority of people simply responded that they would help. When asked how they
would help, they were for the most part unable to give specific helpful things
they would do; while some said they would help carry books or push wheelchairs.
They did not, for example, say they would tell the disabled person about
government pensions or scholarships that are available fore the poor. Also, on
some visits to schools, it was discovered that these VBR students aren't taking
an active role in educating other disabled students about such opportunities or
about rehabilitation opportunities at ASSA. In one house visit that was made
for this study it was discovered that when a particular participant's young
nephew had a disability, he didn't even bother to tell them about ASSA and that
they could help.
(g) Conclusion
The disabled children's integration into society has been
for the most part quite successful. The rural community has responded to them
positively and is somewhat helpful. However, there is a clear disparity between
the status of disabled males and females with regards to social integration
into society. Amar Seva Sangam conducts awareness campaigns about disability
through cultural dramas and programs in the various rural communities. A main
focus of such education should be the empowerment of females. The rural
community and particularly parents of disabled should be educated that it
should not be an embarrassment for disabled females to be seen in public. Also,
it is important to involve females in activities that instill self-confidence
in them during both "home care" and VBR.
This data also shows that the people who are acting
negatively are not properly being reprimanded, as majority of the victims will
simply ignore and keep the problems to themselves. Perhaps, field workers should educate VBR participants on
effective coping methods, and promote self-confidence within the disabled so
that more people can stand up for themselves and/or inform the proper authority
figures.
The fact that the majority of the disabled people who are
economically poor are able to use commonly used and inexpensive forms of
transportation is a very positive indicator for integration. Only a few are
forced to rely on more expensive forms of transport. However, during the
interview when asked what difficulties they face in society, some responded
that they had difficulty walking on the roads (because they weren't properly
paved), using the bus and using their tricycles on some roads. Two people even
dropped out of school citing difficulty in taking the bus as their main reason.
Therefore, one still sees the need for organizations like ASSA to work with
governments and other groups to improve the facilities available for the
disabled such as disabled-friendly buses, paved roads, etc.
The lack of initiative shown by some participants with
regards to helping other disabled, may indicate that ASSA needs to take a
greater role in educating students about the need to help other disabled so
that they act as "social workers" to seek out and assist other
disabled people. Simply telling VBR students to tell other disabled students at
their school about scholarship and rehabilitation opportunities for the
disabled could go a long way.
By examining
each of the components of the study, it can be concluded that Amar Seva
Sangam's efforts to rehabilitate and integrate the physically disabled are
generally effective. Across the
board, it was discovered that independence of activities of daily living,
mobility and maintenance of physical conditioning generally improved from the
time of admission into ASSA. The
Sangam's "Home Care" program is effective in physically
rehabilitating the disabled for their re-integration into society; however
social factors could be adjusted.
As seen, maintenance of academic and extra-curricular performance
dropped during VBR and interpersonal relationships do not seem to be high for
females. As well, administrative
issues found during the preliminary report can be improved upon in order to
keep the information and tracking of records easier to obtain. We suggest the
following recommendations for Amar Seva Sangam:
1) Organize and computerize all
information in student's file. On Microsoft Access or other database program, a folder
could be opened up for every student. In the folder, there could be various
sections that contain different important information Ð general information,
marks, physical assessments, social worker visit, etc. After a set of new marks
is obtained or a new physical assessment is done or a social worker visits, a new
entry could be made into the database into the appropriate section.
2) Ensure all paper work is
completed at the appropriate times. Have a supervisor or manager look over the paperwork
(information taken by the social workers during the field visits) and if it is
acceptable, sign it. It could then be typed into the computer by administrative
staff.
3) Create a form, which has to be
filled out each time a social worker visits a student. The form could include, current
education status (e.g. attending 11th Standard), changes in physical
condition and mobility if any, a section for other concerns that arise among
other things and what the social work did at the visit (i.e. helped fill out
scholarship form, paid school fees, etc.) A supervisor can then sign off a
completed form. A similar form could be created each time a physiotherapist
does a physical assessment when the child visits ASSA. This will ensure proper
and consistent record keeping.
4) Establish a set amount of times a
social worker should visit a student and ensure that visits occur at certain critical times such
as the beginning of the school year. For example, if the social worker visits a
family at the beginning of a school year and finds out that the student is not
attending school, he could work with the family to find out the reasons and
possibly create a solution.
5) Communicate to the social workers
the importance of documentation, especially of the various concerns and problems that
arise. This will allow supervisors to detect patterns and create wide-ranging
solutions. Emphasize that social workers will not get into trouble for
situations out of their control.
6) Create a form for previously
unidentified disabled persons. Social workers should carry a form during each field visit
that will allow them to document information about a previously unidentified
disabled person they see. Encourage social workers to follow up on all
previously unidentified disabled persons that the villagers report.
7) Encourage appropriate and regular
appliance use. Since a percentage of participants were
found to be irregularly using or not using their appliances, new technology
calipers that are light weight and cosmetic to improve appearance can be
suggested. Also, during social worker visits, VBR participants and their family
should be constantly educated on the importance of regular appliance use.
8) Ensure that exercise routines are
properly maintained.
a. Physiotherapists have to make sure
that the disabled students understand the need to perform their exercises
daily. Also, children should be taught to do exercises independently while at
"home care" without the physiotherapists or housemothers' assistance,
so that they can transfer this independent practice during VBR.
b. Encourage exercise practice in Self
Help Groups. ASSA's advent of self-help groups (SHGs) which some VBR students
are part of, can act as a central meeting place for participants to get
together and do exercises as a group.
c. For cases where doing exercises are
imperative, physiotherapists or social workers trained in exercises should make
house visits to ensure the students are keeping up with their routine and be
taught new methods upon progress of their disability.
9) Formation of more Self Help
Groups for VBR students. SHG's can be used to encourage the VBR students to participate in
productive extracurricular activities such as disability awareness programs and
assisting with the running of SHG's themselves. They can also act as a focus
for arranging private tuition (tutoring), so that students can be assisted with
their weak subjects and marks could be improved. The students can also work
together and help each other out by forming study groups within the SHG's.
10) Setting up the infrastructure for VBR students to
get training in ASSA's existing vocational facilities. Though an education has given them literacy, it does not
greatly advance these disabled youths likelihood of gaining employment. With
more and more VBR 1 and 2 students finishing their schooling, the need to train
them in a trade in order to gain employment becomes important. Also, investment
of money into setting up new vocational training facilities in vocations that
can yield jobs for the disabled, can be another direction for ASSA. Another
option is to help fund their vocational training at outside centers, or provide
loans for such purposes
11) Finding suitable employment for vocational
trainees. ASSA could play a leading role in
encouraging self-employment by giving small business loans to vocationally
trained disabled students. ASSA could also set up a job placement or co-op
program for the disabled where they could work with companies and encourage
them to hire trained disabled candidates. Another suggestion can be setting up
a factory within ASSA's premises that produces various goods such as soaps,
candles, etc. where the disabled, even those that are not educated, are hired
to work and profits from such ventures could fund ASSA's charitable
programs.
12) Set up a "scholarship fund" and/or
student loan program.
Specifically raise money to fund college students who have shown dedication,
hard work and ambition but are unable to fund their education through other
means.
13) Social workers should work closely with students
and their families who have given up school. They should aim to find out where these students'
interests and strengths lie and try to determine a path that can lead them to
success. As well, it is particularly important to educate parents about the
importance of allowing their children to pursue their educational and vocational
goals, as it may be the parents' restricting their children from attending
school.
14) Encourage the empowerment of females. It was found that in matters of
interpersonal relationships and their social environment; females had more
difficulty with coping than males.
The rural community and particularly parents of disabled should be
educated that it should not be an embarrassment for disabled females to be seen
in public. Also, it is important to involve females in activities that instill
self-confidence in them during both "home care" and VBR. One example
is getting females involved in SHG and SHG awareness programs.
15) Improve facilities for the disabled. Organizations like ASSA and other NGO's need to work with
governments and other groups to improve the facilities available for the
disabled such as disabled-friendly buses and paved roads. ASSA can also use SHG as a medium by
which facilities such as bathrooms and ramps could be built within a disabled
person's house.
16) Take a greater role in educating students about
the need to help other disabled people like themselves, so that they act as "social
workers" to seek out and assist other disabled people.
Obviously,
not all these suggestions can be implemented immediately, however these
recommendations should be considered as a long-term vision for Amar Seva
Sangam; whereby we can aim that the integration of the Village Based
Rehabilitation participants after their "home care" stay at ASSA will
produce fully confident and functioning members of society.