At a Glance
- A way for families to design and manage supports for their child, instead of relying on standard agency programs.
- Families hire staff via their care team, set routines, and use a broker and fiscal intermediary for guidance and paperwork.
- Gives flexibility, personalized support, and real-life skill-building—empowering but requires parent involvement.
For many families navigating developmental disability services, it all can feel like a lot because IT IS. If you are receiving Office for People With Developmental Disabilities (OPWDD) services, you have made some big strides in your child’s care. While OPWDD is a tremendous resource, the aid is structured around what agencies can offer, and while this is a huge help, it may not always be fully attuned to what your child truly needs. That’s why many of us parents eventually find our way to something called Self-Direction via OPWDD.
Like most helpful resources I learn about that can help my child, I learned about them from other parents. These are parents who have their children receiving services through OPWDD.
As my son got older, the options didn’t feel aligned with what he needed on a daily basis. And while services are always super appreciated, I knew that we needed different support.
Around that same time, I spoke with a fellow mom whose daughter, now an adult with Rett Syndrome, had been using Self-Direction for years. Hearing her perspective made the service feel like the next step. Hearing how this family had built their life around it successfully helped push me to explore Self-Direction more seriously.
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I immediately brought this up to our care manager, who is a subcontractor through OPWDD, but I was told it might not be the right fit because I was always busy at work and it might be too stressful for me. She was right; most parents are overwhelmed, and show me a special needs parent who doesn’t have a lot on their plate! It wasn’t until my son was assigned a more supportive care manager, not just of my child, but also of helping me navigate the paperwork that Self-Direction entails, that I felt really supported.
What is Self-Direction?
In layperson’s terms, Self-Direction is a service option through OPWDD that allows families to design and manage supports for their child rather than relying solely on traditional agency-run programs. In simple terms, it gives families more control over how services are delivered and what their child’s support system actually looks like day to day.
Instead of fitting into a pre-set schedule or program, families participating in Self-Direction can hire their own support staff, create individualized routines, and design services that reflect their child’s interests, strengths, and goals.
How Self-Direction Works
While it’s called Self-Direction, families aren’t navigating the process alone. The model includes several key roles that help support families along the way:
Broker:
A broker helps families create a support plan and identify goals for their child. They also help determine how to allocate the approved budget to support those goals.
Fiscal Intermediary (FI):
The FI handles the administrative side of things—payroll, taxes, and compliance, so support staff can be paid, and the program remains in compliance with OPWDD regulations.
Direct Support Professionals (DSPs):
These are the staff members families hire to work directly with their child. DSPs might spend time with a child in the community, work on life skills, support social development, or help with everyday routines.
One of the biggest differences between Self-Direction and traditional services is flexibility. Supports do not have to happen only during standard program hours or inside a facility. They can take place at home, after school, on weekends, or out in the community. For many families, that flexibility allows their child to build real-life skills in environments where they feel comfortable.
Self-Direction also allows families to choose the people who support their child. Instead of rotating staff assigned by an agency, parents can hire individuals who genuinely connect with their child and understand their personality, communication style, and needs. That level of consistency can make a meaningful difference.
Getting Started
Getting started, however, isn’t as simple as signing up.
My first step was attending an online seminar, which is required before moving forward in the Self-Direction process. Families participate in the training and receive a certificate before they can continue to the next steps. The seminar walks through the basics of how Self-Direction works and what responsibilities families take on when choosing this path.
After that comes the registration process—and with it, a fair amount of paperwork. There are forms to fill out, approvals to move through, and meetings to help establish the program’s structure. Like many things within disability services, it requires patience and time.
We are still fairly new to Self-Direction, and I’m learning as I go.
One of the things I’m figuring out right now is how to manage the paperwork and the financial side of things. In some cases, families have to pay for certain items or services upfront and then submit the paperwork for reimbursement. For me, that has often meant putting expenses on my credit card and waiting to be reimbursed later.
This part can be stressful, as it means that if you do not get an invoice preapproved for the class or activity you are taking, the agency that manages your child’s Self-Direction budget will need to pay it and then be reimbursed.
Not every family can float expenses like this, and I think about it often. While Self Direction creates opportunities for more personalized support, the logistics can sometimes pose barriers that families must navigate carefully.
The Promise of Self-Direction
At its core, Self-Direction was designed to create more individualized support systems. This is a support that recognizes your child’s life plan may require individualized services to meet the goals set for them. This includes what their IEP states and what their care team is helping you work through to best support your child.
For some families, that might mean focusing on community activities.
The real shift is this: instead of trying to fit your child into an existing structure, the structure is meant to adapt to the child. For example, right now, my son, who is a little over six months in, is an eloper, which means water can be dangerous. So we have him in swim classes. For me, this shows him that pools are for swimming, and there are rules about how you get into the pool and how you swim. This is a life-safety skill.
Of course, there is a trade-off. More flexibility also means more responsibility. Parents often find themselves interviewing staff, managing schedules, communicating with support workers, and staying organized with paperwork and planning. Many families describe Self-Direction as empowering—but also demanding.
Still, I come back to the reason we started.
Self-Direction offers the possibility of building support that truly fits my child—support that aligns with his personality and how he experiences the world.
Right now, we’re still early in the process. I’m learning how to submit paperwork, how reimbursements work, and how the entire system fits together. Like many things in parenting a child with different needs, it’s a mix of hope, trial and error, and a lot of learning along the way.
But even at this early stage, I can see why so many families talk about Self-Direction as a turning point. It offers something that can sometimes feel rare in complex systems: the chance to build supports around your child’s real life.
And for many parents, that possibility is worth the learning curve.
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