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 it is being used as a blueprint for dismantling the Self-Directed Supports (SDS) model. While we have seen recent movement to protect PA pay rates, the regulation continues to impose rigid budget calculations and restrictive "Back-Up Plan" requirements that ignore the reality of the ongoing caregiver shortage. By stripping away the "Full Toolbox"—specifically IDGS (Individual Directed Goods and Services) and Community Specialists—the state is making it impossible for families to manage their own support systems safely.
The "So What?": The Human Impact
This isn't just about paperwork; it's about lives. For Missouri families, these regulations mean:
- A "Hollowed Out" Program: Restoring pay rates while cutting IDGS and Community Specialists is like giving a carpenter a paycheck but taking away his hammer and his blueprint. Without these tools, families cannot maintain safety or community integration.
- Caregiver Burnout: By adding layers of administrative burden and restricting flexibility, the state is leaving families with no safety net, forcing them toward expensive institutionalization.
- Financial Irresponsibility: Every person forced out of SDS into an institution costs Missouri taxpayers up to $600,000 more per year.
The Evidence: Why We Are Speaking Up
The current application of 9 CSR 45-3.080 contradicts the Person-Centered Planning Process. By prioritizing "standardized" state budget caps over the "individualized" needs of the patient, the state is failing its own mission. The recent House Budget (HB 2010) move to save PA rates proves that advocacy works, but the refusal to restore the full SDS toolbox proves that the state still views our independence as "optional."
The Solution: Our Demands
We, the undersigned, call on the Missouri Senate and the Department of Mental Health to:
- Restore the Full Toolbox: Reinstate funding for IDGS and Community Specialists in the Senate Substitute for HB 2010.
- Ensure Individualization: Amend 9 CSR 45-3.080 to ensure that "Self-Directed" truly means person-centered, where individual needs—not rigid formulas—determine budget authorizations.
- Halt and Re-evaluate: Immediately delay administrative amendments to allow for a comprehensive public review that includes the families actually living under these regulations.
Updates
Reached 1,000 supporters
February 5, 2026
Reached 100 supporters
January 31, 2026
409 Comments
This effects me doing self directed allows me to be more independent and involved in the community and it helps my mom since she’s my staff it helps support us without it I won’t be able to be out in the community anymore
My brother Aelred lived in a nursing home instead of at home with the support of a DSP. This was the nineties. We can’t go back to warehousing our folks. People have the right to DSP support to live their self determined lives in community.
My adult daughter has used this service for years. It allows her to learn skills, Set her own schedule and be safe in her chosen community. SDS allows for stable, trained staff that know her well. She is able to advocate for herself and direct her care and her life. .
Single parent caregiver for my adult handicapped son. My marketplace insurance on myself just more than doubled with the end of subsidies. Now staring at program cuts. Something has to give. Most likely will be my health insurance.
We use this program for our son and without it I'm not sure what we would do. He has been kicked out of 6 ISL's and we now have an awesome team and he is thriving! We can't lose our staff, they have changed his life around tremendously!
I’m protecting my disabled sons right to live at home and in his community.
I am currently an SDS employee caring for my elderly aunt with Down syndrome. Her health as declined and she needs constant attention, however I can’t afford to have a pay decrease with the current economic increase in the cost of living. Both my aunt as a disabled person in need of care and myself providing for my family, rely on the funding from sds.
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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 it is being used as a blueprint for dismantling the Self-Directed Supports (SDS) model. While we have seen recent movement to protect PA pay rates, the regulation continues to impose rigid budget calculations and restrictive "Back-Up Plan" requirements that ignore the reality of the ongoing caregiver shortage. By stripping away the "Full Toolbox"—specifically IDGS (Individual Directed Goods and Services) and Community Specialists—the state is making it impossible for families to manage their own support systems safely.
The "So What?": The Human Impact
This isn't just about paperwork; it's about lives. For Missouri families, these regulations mean:
- A "Hollowed Out" Program: Restoring pay rates while cutting IDGS and Community Specialists is like giving a carpenter a paycheck but taking away his hammer and his blueprint. Without these tools, families cannot maintain safety or community integration.
- Caregiver Burnout: By adding layers of administrative burden and restricting flexibility, the state is leaving families with no safety net, forcing them toward expensive institutionalization.
- Financial Irresponsibility: Every person forced out of SDS into an institution costs Missouri taxpayers up to $600,000 more per year.
The Evidence: Why We Are Speaking Up
The current application of 9 CSR 45-3.080 contradicts the Person-Centered Planning Process. By prioritizing "standardized" state budget caps over the "individualized" needs of the patient, the state is failing its own mission. The recent House Budget (HB 2010) move to save PA rates proves that advocacy works, but the refusal to restore the full SDS toolbox proves that the state still views our independence as "optional."
The Solution: Our Demands
We, the undersigned, call on the Missouri Senate and the Department of Mental Health to:
- Restore the Full Toolbox: Reinstate funding for IDGS and Community Specialists in the Senate Substitute for HB 2010.
- Ensure Individualization: Amend 9 CSR 45-3.080 to ensure that "Self-Directed" truly means person-centered, where individual needs—not rigid formulas—determine budget authorizations.
- Halt and Re-evaluate: Immediately delay administrative amendments to allow for a comprehensive public review that includes the families actually living under these regulations.
Updates
Reached 1,000 supporters
February 5, 2026
Reached 100 supporters
January 31, 2026
409 Comments
Do not create budget cuts to self-directed programs. The Self-Directed program overwhelmingly saves money and provides far better care than any alternative. Show a bit of compassion. If you're not compassionate, then DO THE MATH!
This effects me doing self directed allows me to be more independent and involved in the community and it helps my mom since she’s my staff it helps support us without it I won’t be able to be out in the community anymore
My brother Aelred lived in a nursing home instead of at home with the support of a DSP. This was the nineties. We can’t go back to warehousing our folks. People have the right to DSP support to live their self determined lives in community.
My adult daughter has used this service for years. It allows her to learn skills, Set her own schedule and be safe in her chosen community. SDS allows for stable, trained staff that know her well. She is able to advocate for herself and direct her care and her life. .
Single parent caregiver for my adult handicapped son. My marketplace insurance on myself just more than doubled with the end of subsidies. Now staring at program cuts. Something has to give. Most likely will be my health insurance.
We use this program for our son and without it I'm not sure what we would do. He has been kicked out of 6 ISL's and we now have an awesome team and he is thriving! We can't lose our staff, they have changed his life around tremendously!
I’m protecting my disabled sons right to live at home and in his community.
I am currently an SDS employee caring for my elderly aunt with Down syndrome. Her health as declined and she needs constant attention, however I can’t afford to have a pay decrease with the current economic increase in the cost of living. Both my aunt as a disabled person in need of care and myself providing for my family, rely on the funding from sds.
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Do not create budget cuts to self-directed programs. The Self-Directed program overwhelmingly saves money and provides far better care than any alternative. Show a bit of compassion. If you're not compassionate, then DO THE MATH!