For those with intellectual or developmental disabilities (IDD), care coordination is particularly important. Individuals receiving IDD services often have complex needs that can span health and social sectors. They also experience poorer health and have higher rates of emergency department use and hospitalization than the general population.
Improving service quality and achieving optimal outcomes often depends on better information management. As we will discuss below, a successful approach involves gaining greater insight into an individual’s overall health status, tracking and sharing progress and goals, and finding ways to engage the individual and other service providers around client life plans.
To date, many of these care coordination efforts have been limited by paper-based systems. Working off paper records creates information silos, inefficient hand-offs, and difficulty maintaining and accessing information over spans of time and across different service providers. As greater adoption of EHRs continues to take hold, the right IDD software can make a difference in several key areas.
While an EHR will inherently make managing data easier, not all EHRs are alike. IDD service providers will want to weigh software capabilities in four areas in particular.
Better information sharing among IDD service providers and others across an individual’s support team is imperative. There is considerable value in better-coordinated care and a structured view of health status and client outcomes and progress.
Service providers benefit when they have a complete view of interventions. Access to outcomes data and intake and progress notes ensures each professional has the necessary information and context to serve the individual and do so in coordination with all the other care and services that may be occurring. Service providers will have better decision-making with a whole-person view of health. Such visibility also reduces costs and improves safety by minimizing redundant or unnecessary services which are especially important during care transitions.
Many people may be involved in meeting an individual’s service needs, both internal and external to the organization. Individuals with IDD often see multiple clinical specialists regularly, including, but not limited to, speech/language pathologists, occupational therapists, behavioral analysts, physical therapists, neurologists, nutritionists, audiologists, and cardiologists. As such, health information often needs to be integrated across many settings, including healthcare settings, group homes, private therapy practices, schools, camps, and home and community-based services.
It is essential for IDD software to be interoperable and communicate with other systems using standard industry frameworks such as HL7, FHIR, and USCDI standards. Service providers will need to share client records and/or service plans not only among internal staff, such as managers, direct support professionals (DSPs), schedulers, billing staff, directors, and others for collaboration, but also with providers outside the organization, such as primary care physicians or those providing specialty services, such as occupational and physical therapy. Other communications may need to occur across different service providers, such as day habilitation service providers communicating with home respite services or transportation services providers.
When choosing care coordination software, you also want to ensure communications with family members and other community-based providers outside of service or care settings are considered. A robust client portal also should be a priority, as the service provider may need to share protected communications with the individual and their parent/guardian. Portal use is valuable for client engagement, providing assessment forms and receiving reports from parents/guardians and employment services.
IDD software should give service providers a holistic view of intellectual disability services. Having access to the individual’s records and the context to serve the individual in coordination with other care and services they are receiving best supports high-quality care and better outcomes.
The right EHR also should be tailored to the types of records and tasks disability service providers need to complete, so everything is intuitive and saves the user time. Having a system designed specifically for use in IDD service settings is important in this regard.
Documentation needs with IDD services differ from those in other care settings. Recording behaviors and identifying patterns is individualized for each client. With IDD, service providers rely heavily on linking documentation of behaviors to outcomes that can sometimes be subtle to observe. Documentation of IDD services also tends to occur over longer periods than in an outpatient mental health, substance use, or physician practice setting. The process of achieving goals may span months or even years.
Having technology with built-in prompts around IDD services to aid the completeness, structure, and accuracy of documentation is vital to gaining a full picture of service delivery and progress. The right technology will be able to track progress over time in order to set meaningful, individualized goals.
Consistency of care also is important. Turnover has been anywhere between 40 to 70% for DSPs. With this high turnover rate not only is the integrity of the record paramount, but codifying processes around service delivery and capturing accurate payment data directly affects the bottom line and can make or break an organization. An EHR needs to have accurate and efficient workflows with built-in accountability to ensure smooth hand-offs over time, consistency of service, and accurate payment.
When software has built-in steps around IDD service workflows, it takes the guesswork out of the process. Staff know exactly what they need to do. As each task completes and the next task is triggered, the day-to-day work becomes more efficient, and accountability is maintained. Regardless of manager or DSP turnover, the team understands where their hand-off begins and the actions they need to take. Having the same view of the current state of intellectual disability interventions and progress regardless of when someone becomes involved in service delivery eases the burden around hand-offs and maintaining accountability. IDD software with configurable alerts and notifications also can ensure that nothing falls through the cracks. Setting business rules around critical events, such as when doctor appointments, medication refills, immunizations, or other medical procedures are due, means the team is always informed.
Traditional EHRs aren’t built with IDD service needs in mind, so it can take time for providers to configure the technology to support their day-to-day operations. The right software that is designed specifically for IDD needs will already have the necessary workflows and templates in place to be customized as needed.
A robust telehealth option is also needed in an EHR to minimize or avoid gaps in care. It has been increasingly difficult for individuals with IDD needs to access services, particularly if they live in rural areas. Telehealth is critical to maximizing limited resources in the tight labor market. With an EHR that supports telehealth, service providers can securely host appointments by computer wherever staff and clients are located. Expanding the organization’s footprint this way makes the best use of an in-demand workforce while reducing the travel burden for those receiving services.
Mobile access to the platform also is imperative for maintaining services. For example, direct support professionals often need to take notes in the field, particularly as staff are stretched over larger service areas. A cloud-based system that enables staff to work from anywhere helps support adherence to the same structured documentation and workflows regardless of the service setting. It is important for the mobile solution to have off-line capabilities allowing the provider to complete their work without WIFI access and sync up with the system once an internet connection is regained.
Care coordination is imperative for individuals with IDD needs. Between the number of clinicians, service providers, and specialists they may see, the high turnover rates for DSPs, and limitations around access to services, there is significant potential for disruptions to their service plan.
Care coordination software that supports information sharing and management, codifies consistency of care, and extends staff reach is vital to overcoming many of these barriers. When researching and assessing IDD software, providers will best position their organizations for success by keeping these factors in mind.