The tech wish list for state disability services

As a former Deputy Secretary of Health and Assistant Secretary for the Office for Citizens with Developmental Disabilities for the state of Louisiana, I’ve seen firsthand how outdated systems hinder care coordination, service delivery, and communication. For over two decades, I’ve worked across the continuum of services with individuals with intellectual and developmental disabilities (IDD)—from direct care services to leading community and state agencies—and I’ve experienced the limitations of traditional case management systems. 

In a nutshell, IDD agencies are complex and the digital infrastructure we expect to support them is old—decades old. Most systems were built 15–20 years ago and have only been superficially updated. Their core infrastructure remains largely unchanged and is failing to adequately serve the program participants providers, and agencies responsible for that care and service.  

The basic tasks involved in care management—coordinating and documenting care and sharing information with persons with lived experiences and their families, tend to be burdensome for all involved. Even caseworkers often struggle to access records efficiently, navigating multiple platforms that create unnecessary friction and delay. While the system collects valuable data, users can’t easily access that data to use it for population health initiatives, targeted program participant outreach, or quality assessments.  

Communication channels are vital for IDD case management, but system functionality is lacking for colleagues or providers to easily communicate with each other in one platform. Unlike the most basic electronic health record (EHR) systems, program participants are typically unable to comment on notes in their record—a missed opportunity to involve Individuals in their care, improve accuracy, and enable better outcomes. Instead of enabling data-informed decision-making and meaningful conversations between caseworkers, providers, and clients, these systems are often designed primarily for recordkeeping—counting how many times an action was performed.  

Hundreds of thousands of people interface with these case management systems daily, with billions of dollars provided in services nationally. Imagine what could happen with a better option. 

Bringing case management into the 21st century 

From my perspective, IDD case management systems must be a one-stop and single point of entry to access all services, communications, and records for a given agency—with appropriate permissions, of course. IDD services are not going away, and the needs of the people served, including their families, must be top of mind. Providers are frustrated with the current technology, which is not only cumbersome and time-consuming, but it impedes their ability to fully support people involved with their programs. Payers are getting less bang for the buck as well—without good data access and coordination, those served get less value and potentially cost the system more. 

In an ideal world, an IDD case management system should include: 

Person-centered care planning: AI-enabled tools to generate personalized care plans, summarize cases for providers in the field, and flag potential issues before they arise.  

Streamlined access to records: Permission-based access for partner agencies, community-based organizations to review, authorize, and monitor services, flagging utilization and quality issues where needed. This includes the ability of program participants to view and comment on their own record.  

Simplified field case management: Mobile-friendly tools for providers to submit care plans, schedule visits, document encounters, submit for care authorization, and share records with other teams. 

Critical incident reporting: The ability for appropriate people in the system, especially providers and agencies ultimately responsible for assuring the health and safety of program participants, to track claims data, including alerts for critical incidents and the ability to include corrective action plans. 

Two-way communication: Secure messaging and portals for families and providers to collaborate and share documents easily—a relatively simply component that is missing from many systems.  

Population health analytics: Tools to aggregate and analyze data for value-based care arrangements and community-based interventions. 

Compliance support: Built-in compliance features aligned with a state’s licensing requirements and CMS guidance. 

Developing systems for now and the future 

States are understandably concerned about budgets, which are tight and never flush enough to address all needs. Recent cuts to Medicaid may make this even more difficult.  

As economic conditions shift and leaders come under pressure to contain costs, they’ll need to identify opportunities to improve efficiency. A modern system can reduce administrative burden, eliminate duplicative work, and improve accountability—ultimately saving money while enhancing care quality. 

I believe that case management can come into the modern era. And I believe that in spite of tight budgets, those serving the IDD community can do so more completely, more connectedly, and with higher quality. All with the help of a better case management system.