This guide includes:

• How to craft your story
• A positive framework to share your concerns
• Key issues to consider (inclusion, budget access, housing choice)
• A list of specific, solution-oriented requests Submission tips and testimony best practices

Speak Up with Confidence: A Simple Guide for Sharing Your Story with OPWDD

As New York State continues to gather input on its five-year strategic plan, the Office for People With Developmental Disabilities (OPWDD) is hosting virtual public forums this August. This is your opportunity to be heard — and AutismUp is here to help you prepare.

Whether you plan to speak at a forum, submit written comments, or both, your voice matters. Personal stories are powerful. This guide will help you organize your thoughts, clarify your message, and feel confident sharing your perspective.

Start with Your Story

Introduce yourself simply and clearly. You might begin with:

“My name is [Name], and I’m a [parent/sibling/self-advocate/caregiver] of someone who receives services through OPWDD.”

Then share a brief personal experience that highlights the impact of services like self-direction on your life. For example: “I love the concept of self-direction and am hopeful that our testimonies will help make it more user-friendly and sustainable.”

You do not need to be a policy expert. Authentic stories from real families are what stick with decision-makers.

Try the “Positive Sandwich” Technique

This approach helps organize your message in a way that is constructive and solution-oriented.

• Start with something positive – what’s working, or what gives you hope
• Share a concern – a challenge you’ve faced or a fear for the future
• End with a solution – what you hope OPWDD will consider or change

Key Points to Highlight (Choose What Matches Your Experience)

1. Inclusion Should Be Meaningful

• Inclusion doesn’t mean simply being in the same room as non-disabled peers — it means having the support and environment to truly belong.
• Programs built around the needs of individuals with autism should not be denied just because they don’t resemble traditional classes.
• Denying community classes that are intentionally designed for neurodiverse learners limits real access and puts families in difficult positions.
• True inclusion includes housing: People should be allowed to live in communities that reflect their needs and preferences — including alongside others with shared experiences.

2. Self-Direction Budgets Should Be Accessible

• Many self-direction budgets go underused, even while families struggle to meet basic needs.
• Denials and delays from Fiscal Intermediaries (FIs) often go unchallenged because families aren’t informed about their appeal rights.
• The Ombudsman program (IDDO) should be expanded to assist families through the entire appeals process.
• Budget lines like IDGS are often overcrowded, forcing families to choose between essential supports like housing or staffing.
• OPWDD should publicly report how much self-direction funding goes unused each year and how those funds are redirected.
• Many families are approved for budgets but can’t find an FI to accept them — OPWDD must track and report on this access issue.

3. Self-Direction Should Honor Choice

• Many people turn to self-direction because certified options are limited.
• Supports should exist on a continuum that evolves with an individual's needs—not in silos.
• It’s unfair to hold self-direction and certified programs to different standards when serving the same population.
• OPWDD should recognize that outcomes and quality are defined by what helps individuals thrive, not by paperwork alone.
• Everyone deserves an equitable, portable budget—regardless of what model they’re in. Money should follow the person, not the program.

4. The System Must Evolve

• Over 109,000 New Yorkers with I/DD live with caregivers over the age of 60. Many will lose both their caregiver and home in the next 5–10 years.
• Group homes are full and strained. We need new solutions.
• Self-direction must be part of the long-term strategy—but it’s currently bogged down by red tape and outdated rules.
• The Olmstead decision affirms the right to live in the most integrated setting possible. Self-direction was built with this principle in mind—and we must return to it.
• Innovation is needed, not discouraged. Families often develop creative solutions, only to see them denied due to rigid regulations.
• OPWDD should pilot new approaches and allow “test and learn” opportunities when families meet basic safety and quality standards.

What We Can Ask OPWDD To Do

• Stop denying classes simply because they don’t look like mainstream options.
• Respect individual choice—including who someone lives with and where.
• Make it easier to appeal denials and provide IDDO support throughout.
• Fund a full spectrum of options, not just group homes.
• Encourage and protect innovation in service models.
• Ensure budgets are usable, and hold FIs accountable to honor individual preferences.
• Apply the same accommodation expectations across all settings—certified or self-directed.
• Create dedicated housing supports for self-directed families, including a House Manager budget line.
• Publicly report on unspent budget funds and waitlists for FIs.
• Prioritize technology that increases safety, independence, and sustainability—especially as the workforce shrinks.

Ready to Participate?

Here’s how you can make your voice heard:

🗓️ Register to Speak at an OPWDD Virtual Forum

Register Here

✍️ Submit Written Comments to OPWDD

Email: planning@opwdd.ny.gov

Subject Line: Strategic Plan Public Comment

Final Thoughts

“We need a plan rooted in fairness—not outdated funding caps. We need a system that honors real choice—not red tape. Every individual deserves a portable budget and personalized support that reflects their needs, so they can build the lives they deserve with dignity and stability.”

Tips for Speaking Up

• You don’t need to say everything. Focus on what matters most to your family.
• Be clear and calm. You won’t get a response in the moment—but they are listening.
• You can also send written comments, either in addition to or instead of speaking live.
• Consider closing with: “I’ve also submitted written testimony with more details and ideas for solutions.”

Need Help?

If you’d like support preparing your comments or have questions about the forums, AutismUp is here to help. Contact us at hburroughs@autismup.org.

Let’s speak up together—for a system that works with us, not against us.