The Need: Coordination of I/DD Services in Hospitals



Since the Affordable Care Act (ACA) initiation in 2010, case management has continued to evolve. State case managers are support coordinators in the intellectual and developmental disabilities (I/DD) arena. I/DD are disorders that present at birth, specifically before the age of 18. These disorders are autism spectrum disorders, cerebral palsy and fetal alcohol spectrum disorder. Typically, indicators for these disabilities manifest as delays in functioning by the age of two. In addition, diagnosis of these disorders may present syndemically with other co-occurring conditions, thereby increasing the complexity of the disability and situations with family. During crises, harmful behaviors and situations are highly intense. Homecare providers, hospitals, police and families frequently engage in a power struggle.

A support coordinator’s role is to coordinate care for the I/DD population using state Medicaid waiver dollars. The federal government funds these waivers for use in the delivery of home and community-based services as an alternative to the institutionalization of the disabled populations. While the Department of Developmental Disabilities (DBHDD) determines eligibility to qualify for services, support coordinators assist with the yearly redetermination of services, including criticality of need. In addition, support coordinators interview, assess, advocate and link clients or patients to providers, specialists and resources, and collaborate with other providers, such as behavior specialists on a linear continuum. Through my observations working with I/DD populations and experiences from the COVID-19 pandemic, the coordination of services between support coordinators and hospital case managers is an immediate need.

Medicaid waivers are allocated according to intensity of behaviors and availability of funding. The program funds routine day services, personal staff and transportation. The role of the behavior specialist is to identify and track maladaptive behaviors for training in functional skills and crisis prevention. The training involves using evidence-based differential reinforcement strategies to teach desired behaviors that aim at reducing inappropriate or maladaptive behaviors.

Crises are threats to harm yourself or others. Among I/DD populations, a crisis may present as a response to a mood disorder, a medical illness, or may be function-based. For instance, diabetes can set agitation, which causes hitting behaviors. Although inappropriate, the hitting may be an attempt to communicate. Hence, regardless of setting events, functions are explained as why behaviors occur. The four functions of behaviors are escape, attention, access to tangibles and sensory. A sensory function may also present as a reinforcer to a particular behavior. Crises among I/DD populations are intense and can last from minutes to hours. Sometimes, it can span into days with violent and aggressive behaviors to others or self-injury to the most delicate parts of their body. Crisis interventions are available 365 days a year; however, response times are usually delayed for hours. During this time, secondary injuries or illnesses, several inpatient admissions/readmissions per day, or death may occur, and the staff or family members may become subjects to aggressive and violent behaviors.

Utilization management is a healthcare technique for evaluating services against allocated dollars. It upholds a process of reviewing medical necessities for dollars spent and identifies trends and patterns. Upon review, most hospitals bundle mental and I/DD services into one behavioral health reporting category. Despite several readmission data for the same I/DD patient, coordination of services between support coordinators and hospital case managers is not shared with behavior specialists. In my professional and personal experiences, resistance from hospital staff is predominant from one hospital to another. Perhaps, this problem is because of a lack of insight on the complexity of developmental disorders and I/DD protocols among hospital staff and the lack of specialized interdisciplinary teams in the emergency room. Although some emergency visits may present true positives, not all visits are crises; therefore, false positives occur. To maintain consistency in behavior support services and improve the quality of services received during a crisis, training should be extended to hospital staff to follow the same behavior intervention plan for a defined period in homes and communities.

In 2021, I completed the Integrated Case Management (ICM) training. Despite my combined experiences as an administrator and provider, the training has enhanced my utilization and coordination of services. Collaborations between hospital case managers, support coordinators and behavior specialists are critical to understanding I/DD protocols and dynamics. Board-certified case managers in hospital settings are encouraged to take the lead in contacting support coordinators for improved coordination of services toward discharge.

It is expected that with influence from hospital staff, desired behaviors for I/DD patients would be reinforced, particularly for those with attention-seeking, escape and access to tangible functions. The initiative would control false positives and prevent unnecessary hospital visits with savings in Medicaid and Medicare dollars. There is a need to scale up the quality of services during I/DD hospital emergency visits.

dr. mercedes williams

Dr. Mercedes Williams, DBH, MPH/ID, LMSW, CCM, is the founder of Populations and Interventions Team Company (PITC). PITC is an integrated care behavioral health practice with locations in Georgia and Delaware. PITC takes pride in addressing syndemically associated diseases and conditions during the same clinical visit. Dr. Williams received her her bachelor’s degree in healthcare administration with an emphasis in long-term care at the University of Phoenix. She graduated with a master’s degree in public health infectious diseases from the University of South Florida, and she completed her doctorate in behavioral health from Arizona State University. She is board certified in case management, addiction counseling and psychometry. She is a licensed social worker and completed a fellowship through the American Psychological Association (APA) headquarters in Washington, DC. She has continued to maintain her health insurance agent’s license, is skilled Medicare enrollment and holds an endorsement as a behavior specialist in the State of Georgia.


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