The Art of Stepping Back : Home Care For Individuals With Disabilities

While helping my daughter buckle into her car seat, she suddenly started to struggle and blurted out a phrase familiar to parents everywhere. “I do it myself!”

For guardians and caregivers of individuals with disabilities, stepping back is an essential skill. A skill that requires intentional decision-making and patience.

Of course, some individuals have limitations that persist despite extra attention and perseverance. I deeply admire the guardians and caregivers who give their all, ensuring their loved ones have what they need, often with no clear end in sight. But that’s not what this article is about.

Instead, I want to focus on situations like mine, where I fell into a habit of helping without considering whether my support was truly benefiting my daughter’s growth and development. It’s also about those moments when caregivers step in simply because it’s easier.

I can buckle my daughter’s seatbelt in under 10 seconds. If I let her do it, it takes twice as long.

Thankfully, she took matters into her own hands and told me to back off. But that’s not always how it works, especially when supporting individuals with disabilities. Many won’t speak up, even if they crave more independence. Worse, some individuals learn to rely on caregivers unnecessarily, knowing that if they wait long enough, someone will eventually do everything for them.

Finding the Balance Between Support and Independence

Not long ago, my wife and I stayed at my parents’ house while they were away. During that time, we were responsible for making sure Tate was ready for his day program when his support staff arrived.

I hadn’t realized how many prompts were involved in what seemed like a simple task, getting ready for the day. Setting an alarm, brushing teeth, showering, getting dressed, making breakfast, grabbing a wallet, the list went on. Each of these tasks required some level of prompting.

The entire time, my wife and I struggled to find the balance between offering support and allowing Tate his independence. That balance becomes especially difficult when time is short and patience is wearing thin. We did our best, but I never felt great about it.

Since then, I’ve learned about Level of Independence Prompt Scoring, a concept that has completely changed how I think about supporting individuals with disabilities and even how I parent at home.

What is Level of Independence Prompt Scoring?

Level of Independence Prompt Scoring is a framework that categorizes caregiver intervention into seven levels, ranging from full assistance to complete independence. The goal is to gradually reduce the level of intervention over time, fostering greater self-sufficiency.

Here’s how it works:

1. Independent - The participant completes the task alone.
2. Gesture Prompt - A physical movement guides the participant.
3. Indirect Verbal Prompt - A general verbal cue or question is given.
4. Direct Verbal Prompt - A specific verbal instruction is given.
5. Modeling Prompt - The task is demonstrated.
6. Light Touch Prompt - A gentle physical cue is used.
7. Full Physical Assistance - The caregiver fully assists with the task.

By tracking progress over time, caregivers can be more intentional about increasing independence rather than unintentionally reinforcing dependency.

Most-to-Least vs. Least-to-Most Prompting

There are two main strategies for implementing prompt scoring:

• Most-to-Least Prompting - Start with the most invasive prompt (such as full physical assistance) and gradually reduce intervention as the individual becomes more capable.
• Least-to-Most Prompting - Start with no prompts and only increase intervention as needed.

For example, let’s look at Tate’s toothbrushing routine.

• Most-to-Least Approach: If Tate struggles, I start with direct verbal prompts (“Tate, go brush your teeth”). Once he brushes consistently, I transition to an indirect verbal prompt (“Get ready for the day”), then reduce it further.
• Least-to-Most Approach: I wait to see if Tate brushes his teeth without a prompt. If not, I begin with a gesture (pointing to the bathroom). If that doesn’t work, I move to an indirect verbal prompt, then a direct verbal prompt, and so on.

Neither method is “right” or “wrong.” The choice depends on the individual and the situation. Tracking progress by keeping simple notes on which prompts were needed helps caregivers make thoughtful adjustments over time.

The Challenge of Stepping Back

Using a structured approach like prompt scoring can help caregivers intentionally foster independence, but it won’t make caregiving easier.

• It won’t make you more patient.
• It won’t stop your instinct to take over.
• It won’t remove the frustration of watching someone struggle with a task you could easily do for them.

The art of stepping back requires both a plan and perseverance. The good news? If you’re a guardian or caregiver, you already have grit and determination in abundance.

Living Beneath Our Privileges

I’m reminded of a story told by Dieter F. Uchtdorf:

There once was a man whose lifelong dream was to board a cruise ship and sail the Mediterranean. After years of saving, he finally bought a ticket.

Because money was tight, he brought a suitcase filled with simple food, cans of beans, crackers, and powdered lemonade to last the trip.

He longed to participate in the ship’s activities, working out in the gym, watching movies, swimming in the pool. Most of all, he yearned to taste the incredible food he saw others enjoying. But, assuming it all cost extra, he kept to himself and ate his simple meals in his cabin.

On the last day of the cruise, a crew member asked which farewell party he’d be attending. That’s when the man learned something shocking:

Everything, the food, entertainment, activities... had been included in his ticket.

Too late, he realized he had spent the entire trip living far beneath his privileges.

The Cost of Over-Caregiving

Like the man in the story, individuals with disabilities too often live beneath their privileges.

And I recognize that, at times, I have played a role in this.

By doing everything for my brother, I unintentionally confined him to a small cabin with simple meals, when, in reality, he was on an all-inclusive cruise ship. There was no reason he shouldn’t enjoy all the food and entertainment available to him.

Not everyone will achieve full independence in this life. But that doesn't mean we shouldn't strive to help people with disabilities achieve as much independence as they can.

Final Thoughts

Independence doesn’t mean abandoning support. It means giving people the opportunity to struggle, to grow, and to learn from experience. It means stepping back when we instinctively want to step in.

Because sometimes, the most loving thing we can do is simply let someone say:

“I do it myself.”