The Problem: Why 9 CSR 45-3.080 Needs Immediate Reform

Regulation 9 CSR 45-3.080 was designed to empower individuals with developmental disabilities to direct their own care, but recent and proposed administrative changes have turned a "self-directed" path into a bureaucratic maze. Currently, the regulation imposes rigid budget calculations and restrictive "Back-Up Plan" requirements that ignore the reality of the ongoing caregiver shortage. By limiting how families can manage their own support systems and adding layers of administrative burden, this regulation is stripping away the very independence it was meant to provide.

This isn't just about paperwork; it's about lives. For Missouri families, these regulations mean:

• Loss of Care: Providers and families are being forced out of the SDS model because the administrative hurdles are too high, leaving vulnerable individuals without the consistent, person-centered care they need.
• Caregiver Burnout: By restricting family members' ability to provide paid support in critical situations, the state is leaving families with no safety net.
• Clinic and Provider Strain: Smaller agencies that help families navigate SDS are being squeezed by these requirements, threatening the closure of the very support structures that make self-direction possible.

The core of Missouri's Developmental Disabilities services is the Person-Centered Planning Process. However, the current application of 9 CSR 45-3.080 contradicts this by prioritizing "standardized" state budget caps over the "individualized" needs of the patient. Many participants have reported that their budget authorizations no longer reflect their actual cost of care, forcing a choice between inadequate support or institutionalization—the exact opposite of the Home and Community-Based Services (HCBS) mission.

We, the undersigned, call on the Missouri Department of Mental Health to:

1. Halt and Re-evaluate: Immediately delay the implementation of the most recent budget and "Back-Up Plan" amendments to allow for a comprehensive public review.
2. Ensure Individualization: Amend the regulation to ensure that "Self-Directed" truly means person-centered, where individual needs—not rigid state formulas—determine budget authorizations.
3. Reduce Administrative Barriers: Simplify the documentation requirements for Designated Representatives (DRs) and Support Brokers to prevent the loss of essential services due to technicalities.