Episode 3: What is Self-Directed Programming?

 Self Direction:  What It Is & How We Got Here

In this episode of Life Without a Filter, Cheryl breaks down the basics of self-direction programming through DDS in Massachusetts and shares the behind-the-scenes story of how her family prepared for this path with her son, L.

What You’ll Learn in This Episode:

• What self-direction is and how it’s funded through DDS.
• The difference between Agency with Choice and Participant Directed Programming.
• Why Cheryl’s family chose Participant Directed Programming and what it really takes to manage it.
• The step-by-step journey that led them here—starting at age 14 with transition planning, the 688 referral, DDS applications, and person-centered planning.
• The importance of building relationships early with your DDS Transition Coordinator and Self-Direction Coordinator.
• Why person-centered planning and transition assessments became the turning point for L’s program.

Resources & Links Mentioned:

• DDS website: Choosing an Adult Service Model that is Best for You:  https://www.mass.gov/info-details/what-is-self-direction 

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As a Disclaimer, I am NOT a lawyer, a medical doctor, or a licensed psychologist. I am writing this blog as a mom sharing her journey and opinions. My views are my own and should not be construed as any direct medical or legal advice. (I hate having to write a disclaimer, but this is the world we live in!)

Transcript

Episode 3:  What is Self-Directed Programming? 

Hi everyone, and welcome back to Life Without a Filter. I’m Cheryl—wife, mom to two amazing young adults, and one very spoiled fur baby. If you’re new here, this podcast is all about navigating life after public school ends for our kids with disabilities. We’ll be talking about services, supports, and the reality of building a meaningful adult life through self-directed programming.

Before we go too far into the weeds of our own journey, I thought it would be helpful to take a step back and answer a really important question: What exactly is self-direction? So in this episode, we are going to have an Intro to Self Direction and how we got here. Let’s dive in.

What is Self-Direction?
Here in Massachusetts, self-direction is a programming model funded through the Department of Developmental Services—DDS for short.  I am going to be referencing the  “Choosing an Adult Service Model that is Best for You.” page on the DDS website and I’ll link it in the show notes so you can take a look at it if you are listening to the podcast.  If you are watching this episode on YouTube, I am going to open up the page in a bit.   As a reminder, I am from Massachusetts, so while I will be talking specifically about our state, you can visit your own state’s DDS websites to find information on programming models in your state.

Before we jump in, here are the highlights of what self direction programming is:

• Self-direction is built on the idea that adults with disabilities—together with their team—get to design a program that’s unique to their needs.
• This all starts with person-centered planning. That means your young adult, with support, creates an Individual Support Plan, or ISP, and that plan becomes the foundation for their program.
• To use self-direction, your child first needs to be found eligible for DDS adult services, usually through something called the Chapter 688 referral process.
• Once eligibility is confirmed, you’ll meet with your Transition Service Coordinator, who helps walk you through the process of submitting a plan for DDS to review and, hopefully, approve funding.
  
  

Two Models of Self-Direction
If you are watching on YouTube I am now on the DDS website.  If you are listening to the podcast, I have provided the link in the show notes.

To give the client an overview, this page shows the 3 choices of programming that DDS offers.  The first is their traditional model which is the one that the majority of clients are participating in and parents are familiar with.  Your child attends a structured program, typically 5 days a week, usually from 9am-3pm and they are responsible for everything.  What your child does in the program will be dependent on what the program offers and has available for your child.

When people ask me what L is doing, I usually say that we are doing a self-directed program model.  But, there are actually two different models under self-direction and this website gives a nice summary of them.

The first one is Agency with Choice.  This is what’s called a co-employment model. Basically, your family and a support agency work together. You take the lead on planning and managing the day-to-day program, but the agency helps with the big administrative stuff—like hiring, payroll, and making sure your program follows the rules. Since the agency is technically the employer, they also set pay rates for your staff.

On the other hand, Participant Directed Programming puts even more responsibility in the hands of the family. You’re not just managing the day-to-day—you’re also in charge of hiring, training, and supervising staff. When it comes to the budget, you’ll work with a DDS Service Broker to set it up, and a fiscal intermediary handles the official paperwork like background checks, tax forms, and payroll. The big benefit here? You get to set the pay rate for your staff—within your approved budget, of course.

The easiest way to think about it is this:

• Agency with Choice feels a little like partnering with a co-op.
• Participant Directed Programming feels a lot like running your own business.

If you scroll to the bottom of the DDS website, there are 2 handouts available that go into more detail about the differences between the 2 programs.  When we were doing our research, I downloaded and saved those handouts in my NEXT STEPS FOR L folder so that I could easily reference back to them. 

Our Family’s Choice
After attending webinars, working with our transition coordinator, and talking with DDS staff, our family decided that Participant Directed Programming was the best fit.

Why? Because our son, L, had very strong opinions about what he wanted—and just as importantly, what he didn’t want—his days to look like. Over the years, we built strong connections with former staff and community members, so when it was time to launch, we already had people and opportunities in place.  Also, after talking to DDS and hearing that many of the agencies at that time were struggling with finding staff, we decided that if I was going to have to find staff, I wanted to set the pay rate.  Also, having my own business, I was used to doing payroll and invoices and while the DDS fiscal intermediary company has not always been smooth sailing, it really is a crucial piece to handling all of the onboarding paperwork and payroll. (Don’t worry, I will do future episodes on this topic alone).

But let me be really honest: this model takes a lot of time and planning. The main reason we’ve been able to do it is because I was in a position to significantly reduce my work schedule. That allowed me to treat this program like a second job—or honestly, like running a small business. And I want to acknowledge: not every family has the flexibility to do that. It’s a privilege, and I don’t take it for granted.

How We Got Here
And here’s something important—I don’t want you to think we just woke up one morning and decided to jump into self-direction. The truth is, the transition process started years before we even knew what self-direction was.

For us, it all began when L turned 14. That’s when transition planning officially kicks in here in Massachusetts, and honestly, it felt overwhelming at first. The transition planning form became part of his IEP, and suddenly we weren’t just talking about academics—we were talking about what L’s future could look like. His vision statement, his goals, his long-term dreams… it all started there. Looking back, those early conversations were the foundation of everything that came later. And to let you know, his vision changed drastically at one point when he pivoted from wanting to attend a college to switching to a vocational path.  But that is the beauty of transition planning, because you revisit it every year in the IEP it allows you to pivot and adjust the goals and benchmarks to reflect the changes in the student’s vision statement. 

Fast forward a bit, and we found ourselves staring at something called the 688 referral form. This has to be submitted about two years before your child exits public school. At the time, I thought, “Okay, we filled out another form, check the box.” But what I didn’t realize was that this was really the gateway to adult services. For us, it meant that L was officially being referred to DDS. Of course, that didn’t mean we were all set—there was still the application process, and yes, even though L had been eligible for DDS as a child, we had to go through the whole thing again so he could re-apply as an adult.  In a future episode I will go deeper into the application process.

Once we got that approval, one of the best decisions we made was to get L’s DDS Transition Coordinator involved right away. We made sure they met L and started coming to his IEP meetings a year before he aged out of school. Having that relationship already in place made the next steps a lot smoother. 

During this time, I was also in “research mode.” I went to every DDS webinar I could find on self-direction. If you remember from past episodes, we thought that we were going to take the “traditional model” route for programming, but because of lack of space in the programs L wanted to attend, we had to also begin researching self directed programming.  Those webinars and sessions were eye-opening—I started to see the possibilities. I also learned that while our Transition Coordinator was helpful, they weren’t always familiar with the self-direction model. So I tracked down the Self-Direction Coordinator at our local DDS office, and that person became a key resource for us.

Then came the turning point: the person-centered plan. This was where everything started to click. Sitting down as a family and with his school team, really listening to L’s hopes and preferences, and putting them into a plan—it gave us a concrete picture of what his days could look like. It also gave us a tool we could hand to DDS and say, “This is who L is, and this is what he wants.”

Around the same time, we had transition assessments done. The school had already completed some as part of L’s three-year reevaluation, but we also went out and got an independent assessment. That second perspective was so helpful—it gave us new insights and helped shape the goals in L’s person-centered plan.

With all of that in hand, we sat down and drafted a version of L’s program. It wasn’t perfect—it was more like a rough sketch—but it showed DDS that we had a vision. When we submitted it to our Transition Coordinator, it became the official starting point of the self-direction process.

From there, things started to move forward. We met with our DDS Self-Direction Coordinator, went through orientation, and finally began the detailed planning process. That was the moment it started to feel real.

So no, we didn’t just dive in headfirst. It was a gradual journey—lots of forms, meetings, and planning sessions—but every step brought us closer to a program that truly reflects who L is and what he wants his adult life to be.

What’s Next
So, that’s how we got here—and why we ultimately chose participant-directed programming.

In future episodes, I’ll walk you through how we actually set up and now manage the program, from staffing to budgets to the everyday details. And of course, the bumps in the road too—because there have definitely been a few.

If you have specific questions about any part of this process, please send them my way. I’d love to work them into future episodes so you get the most practical, real-life information possible.

Thanks for joining me today. I hope this episode gave you both the big picture of what self-direction is, and also a peek at the behind-the-scenes journey that got us to this point. Until next time, remember—you don’t have to do this alone. There are resources, there are people, and there’s a community here to support you.