Dear friends, many parents of children with special needs dream of a place that is inclusive and part of a mainstream society, when they envision a place for their loved ones after them. But somewhere, along the way, we give up on our dream. Today, we will meet a group of parents, who worked relentlessly to make this dream come true! We will chat with two core members of the group, let's meet them:
From Mitr cafe to Inclusive living society, the scan group had an amazing journey. Would you like to share a few glimpses of the journey with our readers?
It all began with yoga classes for special needs families that was started in our home in 2012. Over a period of time we found that, in addition to the yoga practice itself, the coming together of special needs families in a relaxed environment had a very positive impact on both the children and the parents. We also realized that there were many parents of special needs children who were looking for such peer interaction and socializing opportunities. This gave rise to the idea of starting a parent support group, to meet, to discuss and share experiences of having a child with special needs. It began in a small way as a WhatsApp group, some parents then started meeting at coffee shops and so on. It was mid-2015 that we actually gave it the name Special Child Assistance Network (SCAN) . We were operating virtually on Facebook and WhatsApp and then migrated to Telegram when we outgrew WhatsApp. SCAN now has over 4000 special needs families and well-wishers on Facebook. Since November 2017, SCAN is a registered Trust.
We were also fortunate that one of our members, Vimal Balachander, decided to open an associated support center for special needs, called Mitr, in Oct 2015. Mitr became the de facto hangout place for SCAN parents and children. We used to conduct workshops, parent meets, etc., and ran a cafe called Mitr Cafe on Sunday evenings - a social occasion for special needs families, where the children help prepare and serve food, have music programs as well as celebration of events like Diwali, Navarathri Dandiya, Christmas, New Year and so on Our vocational unit Tarang, started operating from there in 2017. We also had a variety of classes for children over the years - yoga, art, clay modelling, dance, music and many more.
From the start, one of the discussion points for the group was all about who would look after our children after the parents' time. What After Us? is a concern that every parent of a special needs child has at the back of their mind. And during the enforced inactivity during the Covid lockdown we decided to do something about it! We were again lucky that a wonderful team of parents came together. Our core team of Meera & Balaji, Kannan, Kiran and the two of us, Nary and Gopi spent a lot of time discussing options, identifying different developers and talking to other parents. We found a ready interest for this initiative and a group of over 30 parents were able to go visit different sites to evaluate the project facilities and amenities. This helped make the process very systematic and democratic; the final selection was based on the clear set of parameters that were rated by a large number of parents, rather than being the choice of only a few of us.
Please tell us about the inclusive living project you are planning.
Nary:
It's inclusive - so families with members who have special needs or disabilities will be a part of the community. We are currently over 60 special families and we expect this to become over 100 families soon, in a complex which as over 2100 flats.
It's customized to the needs of adults with special needs and their families - accessibility features in the flat and in the larger campus, groups with caregivers, services, central cafeteria, therapy centre, vocational centre, opportunity for employment/self-employment such as managing stores, managing cafe's, car wash services, medical services., to name just a few. Plus, they will have access to all the other amenities such as swimming pool, gymnasium, parks, club house, auditorium, etc.
It's Transformational and not just a Place to live. All of the above make for each adult with special needs to discover and fashion for him/herself a purpose, a process and a lifestyle that facilitates a continuous learning. It gives an opportunity to their parents to transform into individuals in their own right - and not just the role of a caregiver that they have spent most of their lives on.
Gopi:
The basic operating model is as follows:
1.
Parents
buy an apartment of their choice – 1BR, 2BR or 3BR – within the community. They
can choose any block, any floor, etc. – purely their preference.
2.
Their
child with support needs can either stay with them or in the Group Home if
he/she is an adult. Some families want their adult child in the Group Home from
the beginning so that he/she starts becoming more independent from the start.
Others would like to have the child with them for a few more years before
shifting to the Group Home. Again, purely their choice.
3.
The
Group Home is similar to a service apartment – fully furnished, and all the
basic amenities are provided, services like housekeeping are included. Payment
is on a monthly basis for the stay. Food, laundry and medical expenses are
extra, based on the actual usage.
4.
Caregivers
will be provided based on the requirements of each individual. In some cases the
person may need a dedicated caregiver fulltime. For most others a shared
caregiver would suffice, which brings down the cost. The care requirements
would be determined by Vidya Sagar through an assessment and discussion with
the family before the person is admitted to the Group Home.
5.
There
is a Cafeteria to provide food for the Group Home residents (all others in the
community can also use this facility). The Group Homes also have fully equipped
kitchens, as some of our children like to prepare food themselves on occasion –
making a sandwich or preparing instant noodles is possible and they don’t
always have to eat at the cafeteria. The Cafeteria will be in the hands of a
carefully selected caterer who can offer quality food at reasonable prices. As
the cafeteria will be open to all the residents in the community, this will
enable significant economies of scale.
6.
The
Vocational Centre is where many of them will spend their day. Based on their
interest and aptitude we will also help them with employment opportunities
within the campus. The Vocational Centre will also be the focal point to
organize all the sports and recreational activities – yoga, fitness, swimming,
music, etc.
7.
The
Therapy Centre will offer the full range of therapies at a reasonable cost.
8.
There
will be a clinic in the community to take care of basic medical requirements.
We are also planning to tie up with Chettinad Hospital which is a
multi-speciality hospital less than 2 km away, for regular health check-ups as
well as any hospitalization required.
9.
The
entire initiative will be managed by a Management Committee comprising parents,
persons with disability and also experts like a doctor and psychologist.
Interaction with some of the Caregivers
undergoing Training
You are tying up with other well known names
in the field to provide services to the residents there, do share the details
with us
Nary:
Vidya Sagar is a pivotal part of the project. Vidya Sagar is a 35-year-ols organization based in Chennai that focuses on the holistic development and education of children and adults with special needs, and on empowering persons with special needs and their families with knowledge and skills, while strongly advocating on issues of inclusion in all spheres of life.
The Group Homes are like service apartments shared by 3 or 4 adults with special needs. They will be managed by Vidya Sagar through specially trained caregivers and group home managers.
The hardware can be replicated - apartments, kitchen and space for therapies .. but managing this day to day, catering to a set of people with special needs each of whom are unique in their needs - requires specialized capabilities to know what to do and to train people to do that. Vidya Sagar brings that speciality.
They literally offer a Home Away From Home while the parents are alive; and thus a continuity of the life and lifestyle that the person is accustomed to.
And after the parents' lifetime, it becomes Home - with other members sharing the apartment providing an emotional net; and the professionally run care services providing an infrastructural and vocational net.
Gopi:
The Vocational centre will ne run by SCAN parents. Some of them were running our vocational unit Tarang for many years, till it had to be closed due to covid lockdown.
We also hope to be able to include people, who, in the normal course, may not be seeking vocational option. It's a captive unit, run by parents and also offers a lot of flexibility in customizing it to individual needs.
We will also be involving the best professionals for the Therapy centre as well as other activities. As an organization and as individual parents, we already have links with numerous experts - Speech therapists, occupational therapists, special educators, fitness coaches, swimming instructors, art therapists, music teachers, yoga instructors, etc. We will be bringing in such experts as required for the community.
What are the different
facilities available in your project?
Some of the key features of the project are:
1.
Group Homes (shared accommodation)
for the children needing support, with trained caregivers, on rental basis for
lifetime care
2.
Parents buy an apartment and stay in
the community itself, close to the children
3.
Cafeteria for all meals at
reasonable cost (currently planning for Rs. 250 per day)
4.
Therapy centre – with a full range
of therapy services
5.
Medical centre on the premises. Also
planning tie-up with Chettinad Hospital which is very close to the project site
6.
All common areas to be accessible
7.
Employment opportunities within the
community
8.
Vocational centre with various
activities: art & craft, music, bag making, weaving, etc.
9.
Sports & recreation activities:
Yoga, Zumba, swimming, skating, Music, Art, etc.
1 Strong
emphasis on Governance. The Initiative will be managed by a Board of Parents,
similar to the Board in a company.
Please find below a couple of links that would give you
more insights into what the project is about, and the facilities offered:
1. Brief AV introducing the
project: https://www.youtube.com/watch?v=AragWBJpDMs
2.
Recording of the Webinar we
conducted on Nov 28th: https://www.youtube.com/watch?v=ARzoFMleamc&t=10s
– this has all the details of the initiative, the facilities offered,
pricing, etc.
Would you like to share a typical day of the
young adults living there?
Maybe this is wishful thinking, but we would like to
imagine that there is no such thing as a “typical day”! Or rather, that the
“typical day” is different for each one! For example:
·
An
early riser should be able to go for a walk, a cycle ride, or perhaps a yoga
session in the morning, whereas a late riser perhaps gets woken up just in time
for breakfast
·
Someone
who likes to make themselves breakfast can do so – whether eggs and toast or
cereal with milk, or whatever they can fix for themselves… while others get
theirs at the cafeteria
·
Daytime
occupation can be delivery person for the grocery store, or handling the reception
at the clubhouse, or weaving in the vocational centre – based on choice
·
The
day is interspersed with recreation and sports activities of the individual’s
choice – swimming, Zumba, music, painting, etc.
·
Those
who need physiotherapy or speech therapy, or any other such service will go for
those sessions
·
Evening
leisure time is also choice based – watch TV in your Group Home, or go sit in
the garden, or cycle around… on a weekend, attend one of the fun events that we
organize – a music performance, games for all ages, or just a get-together!
·
Dinner
options too are varied – eat at the cafeteria, make yourself some instant
noodles or oats… or even order a pizza, why not?
I recently heard about the SCAN Hyderabad project?
Are more such projects on the way?
Right from the time we launched our project, we have been
asked to start similar projects in other cities. We would be very happy to
expand to other cities in due course. We felt that it would be important to
first establish the facility in Chennai, as a proof of concept. In the case of
Hyderabad, there are a few parents, some who are members of SCAN, who are keen
to start a similar project immediately. So we have been sharing the learnings
and helping them in the initial steps. Hopefully this will take off soon. We
would be happy to support such groups of parents in other cities as well.
How do you cater to individual needs in an
assisted living facility?
The essence of the initiative is to enable each person to
live life on their terms to the extent possible. The initiative is designed to
encourage individuality and independent decision making.
·
Each
Group Home has only 3-4 residents and they can each decide their daily
schedule, whether to eat in the cafeteria or cook in the apartment, what to do
in their leisure time, etc.
·
There
is a wide range of employment and vocational activity, and each person will be
given the option of what they want to do, based on their interest and ability.
·
When
it comes to specific individual support needs, the approach is to customize the
care and support provided. Each individual’s care needs will be assessed by
Vidya Sagar before they enter the Group Home: the extent and type of care
required; whether a dedicated caregiver or a shared caregiver; whether care is
required through the day or only at specific times, and so on, will be
determined and an Individual Care Plan will be drawn up. This will be monitored
on an ongoing basis by the Group Home manager, and adjustments made as required.
·
The
initial screening by Vidya Sagar will serve to decide on the decision to admit
the individual based on the condition and care requirements; as well as on the
choice of co-living residents.
Parents and siblings are often looking for a
second home for their loved one when searching for an assisted living facility.
What are the key points we should focus on in our quest?
The biggest challenge is to find a place where the quality
of life will be as close as possible to what the person enjoyed at home with
their family. The reality is that most of the time the available and affordable
options are much like a hostel, where life is regulated and individual choice
is limited.
·
So,
our first suggestion would be to look for places that are more “home-like” and
allow a greater degree of flexibility for the individual.
·
Look
for places that are integrated with the larger society, where the individuals
get to meet and interact with others from the community around them. Being only
with others like them who need support is not natural and has been proven to
have many negative effects on behaviour and mental health.
·
It
is very important that you, or someone representing the family, have free and
unfettered access to the individual. You should be able to see how they are
being taken care of, how their physical, mental and emotional wellbeing is
addressed. The facility should be transparent in terms of how it is run, the
safeguards it has in place, and how the residents are being looked after,
·
Here
is where the Governance layer we plan becomes important. In institutional /
hostel set ups the problem is not just that it’s a one-size-fits-all approach;
often there is no connect point for the loved ones to be sure that the care
needs are met at the desired levels (medications, check-ups, even simple things
like status of clothes!, etc.).
Your advice to others who are planning to
start an assisted living facility in India?
·
Be
Inclusive, don’t remove yourself and the residents from the rest of society
·
Focus
on what would suit the individual rather than what would be easier to run
·
Give
choices and decision-making opportunities to each person - they should be there
because they want to stay, not because they have no option
·
Empower
your team, your staff – they should also be there by choice and not just for
the money
