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I have sat across from a lot of families over the years, and I have noticed something. Everyone says the word independence like it means the same thing to everyone in the room. It rarely does. A few weeks ago, I reached out to my friend Marissa Chavez with a few questions about independence. Marissa has spent more than two decades working with people with disabilities, including four years as Site Manager at GiGi’s Playhouse, a Down syndrome achievement center. I wanted to get her perspective on what independence really looks like in everyday life, beyond the usual definitions we hear. A few things she shared have stayed with me.
I expected Marissa to talk about jobs or apartments when I asked about independence. Instead she went straight to the kitchen, telling me it can mean “learning the foundational skills of being and preparing things in a kitchen in the safest manner possible.”
During her time at GiGi’s, Marissa ran a healthy enrichment program that taught meal prep step by step, something simple and repeatable a person could do on their own. No rushing. No skipping ahead because the calendar said it was time.
That reframed something for me. I think a lot of families, mine included if I am honest, picture independence as this far off finish line. Marissa sees it as something built one skill at a time, starting with whatever is right in front of you.
Here is the part of our conversation that hit hardest. I asked Marissa how a caregiver can tell the difference between genuinely helping someone and quietly doing too much for them.
Her answer was blunt. She called it “a huge slippery slope,” and said most caregivers have the best intentions and still end up creating what she calls involuntary dependence without meaning to. Her example was grocery shopping. The move is not to do the shopping trip for the person. It is to help build the list beforehand, talk through what to do if something is out of stock, who to ask, how to ask. Then at the store, you take a step back. As she put it, “no hovering, no speaking on someone’s behalf.”
I will be the first to admit that is harder than it sounds. Stepping back feels like doing less, and doing less can feel uncomfortable when you care about someone. Marissa’s point was that the discomfort is often the caregiver’s to sit with, not the other person’s to solve.
I asked about mistakes next, because I think most of us are wired to prevent them at all costs.
Marissa pushed back on that instinct right away. “Mistakes are a very important life skill for anyone to experience,” she told me, “especially for those with Down syndrome, as it encourages growth and development of the executive functioning skills.” Executive functioning is just a term for the mental tools we use to plan, focus, and follow through on something. For someone with Down syndrome, processing time often takes longer, which does not mean learning has stopped. It just looks different from the outside.
She gave me an example from a literacy tutoring session she ran at GiGi’s. A student had been practicing the same written response for weeks with what looked like no progress at all. Then one day, while the tutor was mid conversation with the parent, the student quietly wrote the entire correct response, unprompted. “The tutor was absolutely floored,” Marissa said, “as she thought the tutee was not absorbing the lesson.”
Progress was happening the whole time. It just was not visible until it suddenly was.
Something else Marissa said during our conversation has stayed with me because it gets at the heart of how we should think about disability.
“They were People First who just happened to have an extra chromosome.”
That line says a lot in very few words.
Before we talk about Down syndrome, disability, care needs, or support services, there is a person there. Someone with preferences, opinions, frustrations, ambitions, relationships, and their own idea of what a good life looks like. That is also why I think independence cannot be separated from choice. Supporting someone is not just about helping them complete a task. It is about making sure they have a say in how they live their life.
My favorite story from our conversation was about a Youth Ambassador at a GiGi’s outreach event, a shy young man with Down syndrome. He was encouraged to say hello to visitors, which was clearly outside his comfort zone.
A father and his son walked up. The dad picked up a flyer, studied it for a second, then realized the photo on it and the young man standing in front of him were the same person. He asked for an autograph. Marissa told me that small act “brought not only a huge smile to the Ambassador’s face but gave him confidence to say hi to passers by without even being encouraged.”
That is the whole conversation, honestly, packed into one flyer and one kid working up the nerve to say hi.
I asked about routines, expecting Marissa to tell me they are the answer to everything. She did not.
Routines are genuinely useful at home, she said, but “they do not always work outside of the home, therefore the unexpected needs to be taken into consideration.” The real skill is not just following a routine, it is having a backup plan for when the routine breaks, and talking through that plan ahead of time instead of panicking in the moment.
I liked that she did not oversell routines. It felt honest.
The part of our conversation I keep coming back to is about choice. I asked Marissa how important it is for someone with Down syndrome to make choices that might not match what their family would choose for them.
Her answer was direct. “To encourage choice, encourages independence,” she said, adding that those choices “need to be heard” even when they do not mesh with what a family would pick.
That is not always a comfortable thing for a family to sit with. It was not always comfortable for me to hear, either. But I think it is right.
I asked her to boil it all down to one piece of advice for families. Her answer stuck with me.
“I would encourage them to actively learn and listen to the individual from an outsider perspective. What would they want for themselves? Would they want someone to not give them that opportunity to be as independent as possible? Put yourself in their shoes. How would you want to lead your life? Quality of life?”
I have been sitting with that question since our call ended.
If you are looking for additional information, GiGi’s Playhouse Community Resources offers resources and connections for people with Down syndrome, their families, and the professionals who support them.
Connect with Marissa: [email protected]
A lot of this conversation lined up with how I try to work at ComforCare Home Care. My caregivers are not there to take a person’s tasks away from them. They are there to stand nearby while someone cooks their own meal, works through a broken routine, or figures out a small decision on their own, and to only step in when it is actually needed.
It is also something I think about in the work we do at ComForCare Home Care San Diego & La Jolla. ComForCare is a San Diego Regional Center (SDRC) vendor providing Respite and Personal Assistance services, helping individuals with developmental disabilities receive support while maintaining as much independence and choice as possible.
If your family is navigating this right now, I want you to know you do not have to figure it out alone. I have sat with enough parents to understand how much thought goes into even the smallest decisions, and I would be honored to talk it through with you, whenever you are ready.
Hasan Ali
President, ComForCare Home Care San Diego & La Jolla
Serving Central San Diego for 20+ Years | San Diego Regional Center Vendor | Co-Founder, Special Needs Business Coalition of San Diego | Alzheimer’s Association Do What You Love Committee Member. Read more about Hasan.
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