Antecedent to Grief: Making the Case for Futures Planning in Parent Training

Bytricia.lund

I recently came across the story of a woman with Down syndrome who had been cared for by her mother for her whole life. The mother got older, and caring for her daughter got more difficult. The woman’s sister kept raising the questions about what was going to happen when Mom could not longer care for her (Who would care for her sister next? Where would she live? How would she be supported financially?) Unfortunately, each time, their mother shut the conversation down. Then the mother had a stroke. There was no plan. What followed, in the family’s own words, was “chaos”. (Link to article: https://www.npr.org/2026/03/28/nx-s1-5764324/family-caregiver-future-planning-help)

I’ve seen that chaos in my own work with adults who have disabilities. One of my adult clients had a father die. With his father died, there was no plan for what came next. This meant that he was moved into a group home two hours from his childhood home. Because he was so far away he could no longer play in his band, attend Special Olympics or regularly see his family. And because his father had managed his money, that responsibility passed to someone younger who barely knew him. In the span of a single loss, he lost his home, his community, his recreation, and his financial voice.

So, the adults I work with are rarely grieving one thing. They are grieving a caregiver and the entire life that had been built around that caregiver. Research on grief tells us that for many people, including neurotypical people, these secondary losses can cut deeper and last longer than the primary loss itself. For people with disabilities, who often begin with less autonomy and rely more heavily on the people around them, the secondary losses can be devastating.

This isn’t a post that shames families for not planning. There are real, human reasons the planning doesn’t happen. The day-to-day demands of caregiving are intense and time consuming. Families often don’t have the information they need. Chronic stress erodes the executive-functioning capacity it takes to navigate future planning. And when a caregiver see a lack of resources and long waitlists, planning can feel pointless.

This may help visualize the process. When we are doing successful Future’s Planning we have a plan and we have communicated and documented that plan. Many times I see parents at this initial “aspiration” stage- which isn’t a bad place to be… but it is not great to simply stay in that phase.

As a BCBA, I’m already doing parent training. I teach communication systems, I help families navigate behavior, I coach co-regulation for the hard moments. Recently, I started folding futures planning and succession planning into that work,  so that what does the future look like, and what’s our next step becomes a regular, ongoing conversation rather than a crisis we scramble to answer later.

I’ve come to believe BCBAs are uniquely positioned for this. Futures planning isn’t a single conversation; it’s a long, layered process, and consistent parent trainings, which are often already on the calendar, are built for exactly that kind of sustained work. We’re already skilled at breaking overwhelming tasks into manageable steps. We already understand motivation, and how the barriers in front of someone shape what they do and don’t do. So we can look honestly at why planning isn’t happening, name what’s getting in the way, and offer compassionate, structured support to make it more likely.

That word compassionate is the whole point. We are not handing families a worksheet and walking away. We are not shaming the ones who haven’t started. Futures planning is not an independent process; it’s an interdependent one, and we do it alongside the people we serve.

Which brings me to the reframe I keep coming back to: succession planning is an antecedent intervention for grief.

We can’t prevent the death. We can’t intervene ahead of time on the primary loss, and we shouldn’t pretend to. But the secondary losses — the home, the community, the routines, the autonomy — those aren’t inevitable. They are environmental disruptions that a plan can prevent or soften. When we arrange supports before the loss, we change the conditions the grief lands in. The death will still be hard. It should be. But it doesn’t have to take everything else with it.

That’s the intervention. And it starts long before anyone is grieving.

If you are a BCBA and want more information about how to start having these discussions, check out my CEU. In the CEU we review the abolishing operations to future’s planning (why it isn’t happen), research around the domains that need to be considered when we are doing future’s planning and how to break down this large task into doable steps. You will also get a Future’s Planning document that will help you walk parents/cargivers through this process.

If you want to earn BCBA CEUs in this area, click here:

https://behaviorlive.com/courses/the-bigger-picture-futures-planning-as-parent-training

If you want visual timelines that explain how/why to address Future’s Planning before adulthood (I use these to help create buy-in and explain the rationale behind what we are doing), click here: https://drive.google.com/file/d/10vpb8KsNQ5NyHNLQiBZooF9NagDJ-A57/view?usp=sharing

https://drive.google.com/file/d/15YkYHwnFiY2TASZ3TKuIxW5LscTrD0-i/view?usp=sharing

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