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.