Improving access and quality of care for individuals with intellectual and developmental disabilities (I/DD) has been a challenge of policy and practice. On the policy side, there is a lack of a comprehensive framework to address the gaps in services—and funding for I/DD services can be inconsistent and insufficient.

On the practice side, the metrics tell the story. There are nearly 700,000 consumers, most of them with an I/DD, on the waiting list for home- and community-based services (A Look At Waiting Lists For Medicaid Home And Community-Based Services From 2016 To 2023). And only 36% of adults with I/DD receive preventive health services (see Obstacles To Preventive Care For Individuals With Disability).

In a recently published consensus statement, “National Goals to Advance IDD Health Outcomes That Matter”, 43 national goals were set to address the policy gaps leading the practice performance problems (see Advancing Health Policy and Outcomes For People With Intellectual Or Developmental Disabilities). The goals address 3 major areas for new policy to improve practice: data collection and quality measurement, coverage and payment for services, and development of the clinical workforce and shared infrastructure. The consensus statement was developed with more than 180 contributors including people with an I/DD, caregivers/partners, family members, (or others who support someone with IDD), clinicians, payers, and regulators.

The framework’s goals for data collection include national EHR standards and performance reporting standards for I/DD consumer services. In the area of benefit coverage, goals included mandating enhanced benefits (to include dental, vision, and mental health coverage) for I/DD consumers and requiring care integration. Another goal is the designation of the I/DD population as medically underserved, providing financial incentives for clinicians to have specialized training.

While policy goals like these serve as a ‘north star’ for the field, provider organization managers are working through the reality of I/DD system changes on the ground. We got a first-hand look at how one executive team addressed a changing I/DD services landscape in the session, Navigating The Move To Waiver Programs In The Managed Care Era: The Rock Creek Foundation Case Study during The 2024 OPEN MINDS I/DD Executive Summit. Najla Wortham, President at Rock Creek Foundation, told the story of how Rock Creek navigated the transition to a new fee-for-service (FFS) payment model in three separate Medicaid waivers (Community Pathways, the Family Supports Waiver, and Community Supports Waiver) of the Maryland Disabilities Administration.

Ms. Wortham said that detailed advance planning for this change in reimbursement was critical to Rock Creek’s success. She outlined three key elements in their transition plan: assessing the current service lines, preparing for the administrative infrastructure necessary to adopt the new payment model, and planning a phased implementation.

To move from cost-based reimbursement to FFS for the waiver program, each consumer’s person-centered plan (PCP) needed to be approved for the entire year. So, Rock Creek had to be sure families were aware of all the available services so they could project what additional services the consumer might need throughout the year. To do this, they developed a visual of the inventory of Rock Creek service lines to ensure all state coordinators, staff, family members, and consumers knew about all available services from the outset.

“It was critical to provide a visual to families depicting the services and supports that we offered when we were developing their PCP”, said Ms. Wortham. “Prior to the transition to FFS, the annual goal development process was exactly that—you met with the individual and their team, and you developed goals to track for the upcoming year. But with the PCP came service authorization based on the plan year, so we needed to project any additional services that the person may need throughout the plan year.”

Second, the Rock Creek team planned in detail for changes to the administrative infrastructure required for moving to FFS reimbursement. “We had to align all of our organizational documentation with DDA’s and with the rules and regulations of their long-term supports and services (LTSS) program. We enhanced our electronic medical records to system to make sure that it had the capabilities and capacity to bill to batch and to audit the staff’s documentation,” Ms. Wortham commented. “Plan for how you’ll comply with new procedures, regulations, and paperwork, such as EHR revisions, documentation/reporting, permissions adjustments, and compliance processes.”

One area of focus was  working with their direct service providers on how to create quality documentation and provider notes. As Ms. Wortham explained, “That note becomes your bill—it gets submitted into the system, and if there’s any deviation from alignment with the PCP, any deviation in time, if your staff’s time sheet does not align with the claim that you submitted, if the trainings that your staff have are not adequate or are not in line with the new service definitions, then you are subject to claw-backs of claims.”

Lastly, Rock Creek took a staggered approach to transitioning services. “We decided to transition our residential services first because we felt that in the FFS payment model, that that was the service most easily controlled. We didn’t really have to deal with issues of utilization or staff productivity, so we knew that we could safeguard our revenue, mitigate any financial risk, and review any lessons learned. We did this before we transitioned our remaining services, which were much more reliant on productivity, documentation, requirements, utilization, and acuity.”

Ms. Wortham also emphasized the importance of an internal transition team. “Our team included staff from across our organization, so our admin teams associated with our DDA programs, our compliance department, our finance department, as well as our outside consultant worked tirelessly to make sure they were looking across all of our services, to ensure all of our business collateral was in line and could support the transition.”

And Rock Creek met weekly with their DDA regional transition team to ensure all of the changes that they were making and at the organization level were in line with the state requirements and matched what the state had in their system. “Every time we made a change internally, we met with our DDA regional office.”

Above all, said Ms. Wortham, it was a major cultural shift for Rock Creek Foundation. How did they handle that? “We were very transparent across the entire organization as the why behind the shift—we have a lot of DSPs that have been with us for a very long time, and they felt like this new level of documentation was taking away their interactions the individuals they supported and have built these connections with. It was very important that we started with the “why”. We have to do this. The state is transforming. The state is enforcing this. So, in order for Rock Creek to be sustainable, here’s what we’re going to have to we’re going to need from you, but here’s the ways we can support you.”

For more on I/DD services, check out these resources in the OPEN MINDS Industry Library:

• OneWell Health Care Expands Connecticut Services To Include In-Home Nursing For I/DD
• Shifting Autism Best Practices
• New Jersey Seeks NADD Competency-Based IDD/MI Dual Diagnosis Direct Support Professional Certification Pilot Services
• 17% Of People With I/DD Are Working In Community Jobs
• The Outcomes Of I/DD Value Based Care
• Managed Care Models For I/DD Services
• Making Managed Care ‘Work’ In I/DD
• Addressing Workforce Issues In I/DD Service Delivery
• Regulatory & Funding Changes Are Coming—How To Be Ready To Track Value-Based Care Outcomes For I/DD Services
• Leveraging Technology In The Delivery Of I/DD Services

For even more, join us on November 14 in Philadelphia at The 2024 OPEN MINDS Aging In Place Summit for the session focused on new models for managed care for the I/DD population, “The Next Frontier In Managed Care: Florida Community Care’s Award Of Florida’s I/DD Managed Care Contract” with David Rogers, President of Florida Community Care.