Transitioning to Independent Living: Pratibha's First Month at TTC

It has been a month since we moved to The Together Community (TTC), Hosur on 22nd June.  Looking back, I feel this transition to independent living did not happen in a month. It is the culmination of years of preparation, patient planning, and the support of an extraordinary team.

The Together Community (TTC) is a thoughtfully designed residential community for adults with Autism and developmental disabilities, where independent living is supported through a caring ecosystem of families, Direct Support Professionals (DSPs), medical support, and community life. It is an initiative of the Together Foundation Trust, with Smt. Sangeetha Chakrapani, Founder of the Trust and the driving force behind the TTC project, providing the vision and leadership behind this unique model of supported independent living.

Right from the beginning, Sangeetha Chakrapani guided us with a well-thought-out transition plan. Her suggestion was simple but brilliant - we recreated the ambience of the studio apartment in our own bedroom. We arranged two beds: one for Pratibha and one for her Direct Support Professional (DSP), Basanti Yadav. This gave the two of them an opportunity to get to know each other in a familiar environment before moving into the studio apartment.

Initially, we were contemplating whether Pratibha really needed a dedicated DSP. We thought that perhaps a shared caregiver, supporting two or three special adults, would be sufficient, considering Pratibha's functional independence. Looking back now, we feel that having a dedicated DSP during this transition phase made a big difference. It allowed trust to develop naturally, gave Pratibha the reassurance of a familiar face, and helped her adapt to her new environment much more smoothly than we had imagined.

The following Monday, Pratibha shifted to her studio apartment. To make the transition gentle, Asha stayed inside the studio apartment with her for the first week. We could see that Pratibha was making a genuine effort to adapt to her new surroundings.

What probably helped the most was the preparation that had begun long before we came to TTC. For more than five years, we had been talking to Pratibha about independent living. We had tried to help her understand that one day she would have a home of her own and that we wanted her to live as independently as possible with the right support. So, when she entered the studio apartment, she didn't see it as a temporary place. She genuinely tried to make it her own home.

Our weekend routine also became an important part of the transition. Every Friday evening, Pratibha comes to our villa, spends Friday night with us, attends her day activities on Saturday, returns home on Saturday evening, and stays with us until Sunday evening. On Sundays, we prepare some of the food that we are used to so that neither Pratibha nor we miss our familiar Konkani cuisine. After dinner on Sunday, she happily goes back to her studio apartment, where Basanti joins her.

Gradually, beautiful signs of belonging began to appear.

She started practising her sitar in the studio apartment with my help. She arranged her belongings comfortably. More importantly, she began referring to it as "my house" or "my studio apartment." Every time I heard those words, I felt an indescribable sense of relief. Those simple words told me that she had begun to accept the studio apartment as her own home.

Pratibha Practising Sitar in Her New Home

Another heartwarming development was the relationship that blossomed between Pratibha and Basanti. What started as a professional support relationship gradually transformed into a warm friendship. Pratibha started calling her affectionately "Basantu," teasing her, laughing with her, and treating her like a buddy rather than a caregiver. Watching that bond develop has been one of the most reassuring aspects of this transition.

After the first week, another carefully planned step was introduced. Instead of sleeping inside the studio apartment, Asha started sleeping outside the room. Pratibha knew her mother was just outside, and that reassurance helped her become increasingly comfortable sleeping independently while continuing to strengthen her bond with Basanti.

After reviewing Pratibha's progress with Sangeetha Chakrapani and the Team Leads, it was decided that, beginning Monday, 20th July, she was ready to stay independently with Basanti.

Pratibha knew that the review meeting with Sangeetha was taking place couple of days before this planned date. Though she repeatedly told Asha, "I am happy to stay without you," we could sense the emotional struggle she was going through. That emotional discomfort also manifested itself in a few physical symptoms. We were, however, confident that these would gradually reduce as her comfort and confidence increased. It was a courageous moment for her. Like every major life transition, it carried both excitement and anxiety.

Since 20th July, Pratibha has been staying independently in her studio apartment while we stay in our villa. We continue to meet her every day in the cafeteria during meal times, and she happily looks forward to coming home to our villa every Friday evening for the weekend.

Life is slowly settling into a beautiful rhythm.

Every day, I spend time with her helping her practise her sitar. Those sessions have become precious moments for both of us.

Asha spends about an hour with her every afternoon in the studio apartment, giving her emotional reassurance while still allowing her the space to build her own independent routine.

Basanti has been wonderful in helping Pratibha with her daily living skills, including ensuring that she takes the right portions of food during meals. The Medical Centre meticulously manages and monitors her medication - now limited to vitamin supplements - giving us tremendous confidence that her health is being looked after with great care. The team has also started helping Pratibha learn to ride a bicycle - something we never imagined would become part of her routine. Every new skill she acquires is another small step towards greater independence.

Looking back, I feel this successful transition is the result of meticulous planning by Sangeetha and the remarkable execution by the professional Team Leads. Every step was introduced gradually, never abruptly, allowing Pratibha to adjust at her own pace.

What has touched us equally is the warmth of the entire TTC community. The families here, the uncles and aunties, fellow special adults, the cafeteria staff, the DSPs, the Team Leads, and the Medical Centre have all played their part in making Pratibha feel accepted and at home. Independence, we have realised, does not mean living alone. It means living confidently within a caring community. The warmth and acceptance that surround her every day have made this transition far easier than we had imagined.

As parents, we often wonder whether our children will find a place where they truly belong after we are gone. Over the past month, TTC has given us the confidence that Pratibha is not just living in a place - she is becoming part of a family.

As parents, we are keeping our fingers crossed and praying that this beautiful journey continues just as smoothly.

This is still only the beginning.

But today, when Pratibha proudly says, "This is my house," I know that years of preparation, patience, hope, and countless small steps have finally begun to bear fruit.

I thought of sharing this experience because many parents of adults with special needs cherish the same dream that we have cherished for years - that their child should one day experience a life of dignity, belonging, and as much independence as possible.

Our experience over the past month has reinforced one important lesson: Independence is not achieved in a single day. It is built over years of preparation, trust, compassionate support, and the courage to let go - one small step at a time.

Measuring Hope: Helping Our Special Needs Children Grow Into Independence

There is one question that quietly follows almost every parent of a child with intellectual or developmental disabilities: “What will happen to my child after us?”

It often begins the day a diagnosis is given.  From that moment, life takes a turn we never expected. Parenting is no longer just about milestones and school admissions. It becomes a long, winding journey through special schools, therapy centres, special educators, psychologists, hospitals, and government offices for disability certificates and benefits… and then some more. It is emotionally draining, physically tiring, and often overwhelming.

As the years go by, that uncomfortable question - “What after us?” - only grows louder. For us, as parents of a daughter with autism and intellectual disability, this concern surfaced quite early, much before she became an adult. Over time, one thing became very clear to us: if we wanted her future to be safe, meaningful, and dignified - even in our absence - we had to help her grow as independent as possible in her everyday life.

This post is about how we tried to measure that functional independence, and how those measurements slowly turned into something more than numbers—they became a way of measuring hope. I will focus here on the measurement system we adopted and how it helped us set goals and plan our efforts. I am not going into the details of the interventions themselves.

Saying “make the person as functionally independent as possible” sounds simple. In reality, it raises many questions. Independent in what? To what level? And how do we know whether we are actually moving forward or just hoping we are?

When I began searching for answers, I could not find a convincing framework designed specifically for persons with intellectual and developmental disabilities that objectively captured everyday independence. That search eventually led me to a framework commonly used in stroke rehabilitation. I had also seen parts of this framework being used in a hospital to evaluate the effectiveness of certain interventions for persons with developmental disabilities - though only in a limited way.

What stood out for me was the clarity and objectivity of the approach. It did not rely on vague impressions or comparisons. It asked simple, concrete questions about what a person can actually do. That is when I decided to explore whether this framework could work for our daughter.

This exploration led us to the Functional Independence Measure (FIM). We began using it to systematically assess our daughter’s abilities across different life skills, hoping it would give us a clearer and more grounded way to track her journey toward independence.

The original FIM framework defines 6 domains and 18 activities. Over time, it was expanded to better reflect real life. Two important extensions were added:

• FAM (Functional Assessment Measure), which includes higher-level cognitive, psychosocial, and community-related abilities

• EADL (Extended Activities of Daily Living), which captures more complex, real-world tasks

Together, FIM + FAM + EADL form a comprehensive framework that spans basic self-care to broader life participation. I refer to this combined framework as EFIM – Extended Functional Independence Measure.

EFIM looks at functional independence across multiple domains, each broken down into specific activities.  Figure 1 presents domains and activities in the EFIM framework.

Figure 1: List of domains and activities in EFIM

Each activity is scored on a 7-point scale, based on a structured set of simple yes/no questions. This makes the scoring consistent and objective, rather than subjective or impression-based.

Figure 2: The 7-point scoring scale 

Each activity score reflects a level of independence. When scores across all 36 activities are added together, they give an overall Functional Independence Score - much like an index that allows us to see progress over time.

We created our first baseline EFIM score for Pratibha in 2008, and her overall score at that time was 116.

From there, we chose a few activities across different domains and set 6-month and 1-year goals. For each goal, we planned and carried out specific interventions. Every year, we repeated the measurement to see what had changed. If an activity showed no improvement for two consecutive years, we let that goal go and chose another. Some areas improved steadily, some slowly, and some barely at all.

Figure 3 shows how Pratibha’s EFIM scores for all the 36 activities for years 2008, 2015 and 2025..

Graphs 1 (blue), 2 (orange), and 3 (green) represent the years 2008, 2015, and 2025. Graph 4 superimposes all three to clearly show her growth in functional independence.

Figure 3:  Pratibha's EFIM scores for years 2008, 2015 and 2025.

A few observations form the graphs make this more concrete:

• Social Interaction (Activity 22) improved from a score of 3 in 2008, to 5 in 2015, and 7 in 2025

• Problem Solving (Activity 26) progressed from 1 → 2 → 5

• Home Finance (Activity 35) showed limited improvement: 1 → 1 → 2

• Comprehension (Activity 16) improved modestly from 2 to 4 over 17 years

These measurements helped us clearly see where progress was happening and where it was not—and guided us in deciding what kind of support to focus on.

Figure 4 below shows how Pratibha's overall EFIM score progressed over time.

Figure 4:  Progression of Pratibha's EFIM scores for 17 years

It is also revealing to see how activities moved across different levels of independence.  Figure 5 below presents changes in Pratibha's Functional Independence across categories in 2008 and 2025.

Figure 5:  Changes in Pratibha’s Functional Independence across Categories: 2008 and 2025.

In 2008:

• 7 activities were in total assistance

• 6 activities were already in complete independence, all of them related to mobility

• The largest number of activities fell under moderate assistance

By 2025:

• 0 activities are in total assistance

• 11 activities reached complete independence

In 2008, 29 out of 36 activities required some level of assistance. By 2025, that number had dropped significantly - clearly showing how functional independence of Pratibha improved over 17 years.

Looking back, we found Extended FIM (EFIM) to be an extremely useful framework - not just for assessment, but for planning life of persons with intellectual and developmental disabilities. It helped us identify areas for improvement, set realistic goals, and anticipate caregiving needs, especially in assisted or supported living environments.

Most importantly, it helped us replace vague fear with informed preparation. As we now move towards a community living setup where Pratibha will live independently in her own studio apartment, EFIM has played a crucial role in helping us prepare - for her future and for our peace of mind.

For us, measuring functional independence became a way of measuring hope - hope grounded not in wishful thinking, but in understanding, patience, and steady progress.

If you are reading this as a parent walking a similar path, please know that you are not alone in asking “What after us?” It is a heavy question, and there is no single right answer. But taking small, honest steps to understand your child’s abilities can replace some of that fear with clarity and confidence.

Independence does not arrive all at once, and it does not look the same for every child. Every small gain matters. Every skill learned, every support identified, is a step toward a safer and more dignified future.

Measuring progress is not about limiting hope—it is about grounding hope in reality. And sometimes, that is exactly what allows hope to grow.