Cost and Utilization with Enrollment in a Medical Home for Individuals with an Autism Spectrum Disorder and/or Intellectual Disability.

Individuals with intellectual and/or developmental disabilities (IDD) tend to incur high health care costs. The Neurobehavior HOME Program (HOME) is an interdisciplinary program that cares for this population. This study will evaluate the health care costs and utilization of individuals during their first year of enrollment in HOME and identify factors associated with higher cost and utilization. Secondary analysis of claims data were used to identify cost and utilization. Generalized linear regression and negative binomial regression were used to calculate utilization and cost. The mean total cost of care during the initial year of enrollment (n=239) per individual was $11,095.87, with $4,640.83 attributed to inpatient care. Those with diabetes (p=0.01), epilepsy (p=0.02), or mood disorders (p=0.03) were more likely to be admitted to the hospital and utilize the emergency department. These findings will enable systems and payers to better construct health care delivery reforms for this high-need population.

Antipsychotic Use and Metabolic Monitoring in Individuals with Developmental Disabilities Served in a Medicaid Medical Home.

This study describes antipsychotic use and metabolic monitoring rates among individuals with developmental disabilities enrolled in a subspecialty medical home (N = 826). Four hundred ninety-nine participants (60.4 %) were taking antipsychotics, which was associated with male gender (p = 0.01), intellectual disability with and without autism spectrum disorder (p = 0.001 and p = 0.04, respectively), and inversely associated with the youngest and oldest age categories (p = 0.001 and p = 0.04, respectively). Among those taking antipsychotics, annual metabolic monitoring rates ranged from 89 % (lipids) to 99 % (weight). Age was positively associated with glucose (p < 0.001) and lipid monitoring (p < 0.001). Adult participants with dyslipidemia (p < 0.01), prediabetes/diabetes (p = 0.04), and hypertension (p = 0.02) were significantly more likely to obtain lipid monitoring. These values exceeded previously reported rates suggesting the importance of an integrated care model.

Care of Adults With Intellectual and Developmental Disabilities: Developmental Disabilities.

Approximately 4.8% of individuals in the United States are affected by developmental disabilities (DDs). These individuals have a spectrum of abilities in terms of communication, mobility, and activities of daily living (ADLs). Because there typically is no specific treatment for the underlying disability, the focus of care should be on diagnosing and managing co-occurring medical and mental or behavioral health conditions and improving function and quality of life. Care of patients with DDs is similar to care of patients without DDs, although adjustments may be needed in the physician's interactive approach, engagement of caregivers, and sensitivity to symptoms. Health care can be enhanced by obtaining information about caregivers and guardians, living and work situations, support services received, and functional and instrumental ADL levels. In managing acute conditions, physicians should assess change from baseline and identify and manage maladaptive behaviors that interfere with care. An individualized preventive care plan should be created that may include additional or adapted screening. Needs for consent/medical decision-making support should be identified and addressed, and consent obtained as appropriate. Providing caregiver support and becoming familiar with community resources are other aspects of caring for this population.

Care of Adults With Intellectual and Developmental Disabilities: Down Syndrome.

Down syndrome (DS) is a genetic disorder involving excess genetic material from chromosome 21. The incidence of DS is increasing, and the life expectancy for individuals with DS has increased to a median age of 55 years. Adults with DS are at increased risk of several conditions, including significant neurologic, cardiovascular, pulmonary, gastrointestinal, musculoskeletal, endocrine, psychiatric, hematologic, and social comorbidities, and additional screening or monitoring may be needed. Additional preventive measures for patients with DS include regular screening for thyroid dysfunction, hearing loss, eye disorders, heart disease, osteoporosis, and dementia, and one-time vaccination with the polyvalent pneumococcal polysaccharide vaccine (PPV23). Quality of life should be the main focus of treatment, with patients being involved in medical decisions as much as possible.

Care of Adults With Intellectual and Developmental Disabilities: Traumatic Brain Injury.

Traumatic brain injuries (TBIs) manifest in various forms and severities, and patients with TBIs can have multiple physical and psychological comorbidities. The physician should be prepared to assess effects of the injury and associated comorbidities, and provide needed social support. Common comorbidities include cognitive changes; epilepsy; chronic pain; headache; sleep disorders; neuroendocrine disorders; dizziness and balance issues; substance abuse; depression and anxiety; dementia; and behavioral disturbances, such as aggression. Early severity and cognitive assessment after TBI is key. For patients with mild TBIs, short-term management focuses on cognitive rest, symptom management, and gradual return to regular activities. Short-term management of patients with moderate to severe TBI often requires intensive care unit admission, early psychological consultation, and use of mannitol and probiotics. Long-term care includes monitoring and managing of the physical, behavioral, emotional, and psychological comorbidities that commonly occur in patients with TBIs. Assisting patients in accessing community and government resources can be crucial for improving their independence and quality of life.

Care of Adults With Intellectual and Developmental Disabilities: Cerebral Palsy.

Cerebral palsy (CP) is a group of disorders that primarily affect motor function. This developmental disability is becoming more common in adults as life expectancy increases for individuals with CP. Many physical, medical, mental, and behavioral health conditions are associated with CP, and assistance should be provided to patients with CP to optimize function, when available. These comorbidities include intellectual disabilities, seizures, muscle contractures, abnormal gait, osteoporosis, communication disorders, malnutrition, sleep disorders, and mental health disorders, such as depression and anxiety. The physician should be familiar with screening for and assisting patients with these issues. Optimizing quality of life requires individualized care plans that may include physical therapy, muscle relaxants, surgery, and nutritional support. Other issues to be addressed include methods to facilitate employment; sexual concerns; and support through local and national organizations for patients, families, and caregivers.

Building a person-centered medical home: lessons from a program for people with developmental disabilities.

The HOME Program provides medical and behavioral health care for people with developmental disabilities across the lifespan. Its unique funding structure provides a fiscally viable, and replicable, means of supporting case management in a medical home setting, addressing system-level barriers that typically impede the implementation of the patient-centered medical home.