New York State’s mission to provide person-centered care to people with intellectual and developmental disabilities (I/DD) is, in theory, designed to help individuals reach their full potential. Crucial to this mission is Self-Direction, which consists of services available to anyone who is eligible for OPWDD services and enrolled in the Home and Community Based Services (HCBS) Waiver.

OPWDD says that Self-Direction gives people the chance to choose their own services so they can “live the life [they] want.” Things you can self-direct include how you spend your days and what you do in your spare time. However, this is hardly as clear-cut as it might seem.

Many community classes, for instance, are not covered by Self-Direction, often because they’re designed specifically for people with I/DD and not open to the general public. The resulting denials for coverage seem to be in direct opposition to a person’s ability to live the life they want — to get out of their homes and into the world — and participate in activities they hold dear or necessary.

Additionally, the Coalition for Self-Direction Families of New York State (C4SD) notes that since November 2022, unofficial “red flag” policies and new exclusions have been invented that make it more and more difficult to get approval for “Community Classes & Publicly Available Training/Coaching.”

Know Your Rights Document

In response, C4SD has created a detailed Know Your Rights Document, and is working to create a “match-making” service between people who have been denied classes, and people who can help you.

C4SD writes that there are multiple pathways for appealing a rejection and that we don’t know yet which works. “We do know you must start by getting the denial in writing. … And you will never succeed if you stay silent.”

Its document guides you through the process. Check it out, and keep it handy.