Preliminary Assessment of a Novel Continuum-of-Care Model for Young People With Autism Spectrum Disorders

Despite growing awareness of the prevalence and economic burden of autism spectrum disorder (ASD) (1), many children, adolescents, and young adults with these disorders do not receive appropriate services and have medical and psychiatric comorbid conditions that can go unrecognized and untreated (2, 3). Evidence-based treatments can be expensive, but they improve outcomes for patients and their parents and reduce the overall costs of ASD management (1). However, effective early intervention is hindered by limited access to expert treatment (4), ultimately increasing the cost of care as symptoms become more complex and refractory (5). Most office-based practices have limited capacity for timely follow-up care, have inadequate clinical experience with this patient population, and lack multidisciplinary teams that can rapidly address environmental and psychosocial contributions to behavioral deterioration (6). Moreover, any improvements individuals with ASD may experience may not transfer from one setting to another, impeding translation of progress made in an office-based, emergency department (ED), or hospital setting to home or residential settings. Because prompt access to intensive treatment particularly for aggressive and disinhibited behavior is often limited, families and police may have only one option: admission to a medical or psychiatric ED or hospital, sometimes for months at a time.

Behavioral deterioration severe enough to prompt entry into the ED or hospital is more likely when intermediate levels of care for the milder forms of emotional and behavioral dysregulation due to ASD are unavailable (2). Patients with ASD are more likely to enter an ED or a hospital because of aggressive, destructive, disruptive, or self-injurious behavior (7). The overstimulating nature of these settings, however, often leads to further behavioral deterioration and to implementation of unnecessary pharmacologic and behavioral interventions (8). In a busy acute service, severe agitation is often managed with sedation and restraint, which are not effective components of ongoing noninstitutional care (9). Resources in these settings have to be diverted from other patients to provide sufficient coverage of the patient with ASD who is experiencing regression, interfering with the staff’s ability to respond to other patients and increasing wait times for all patients.

Improved access to intermediate levels of care can improve behavioral and functional outcomes for patients and can be more cost-effective than higher-intensity, more restrictive treatment (10). In this column, we describe the first year of a pilot outreach project, called Access to Psychiatry through Intermediate Care (APIC), which we developed for patients ages ≤26 years with ASD in a community without adequate access to intermediate care.

Intervention

With support from local foundations, we developed APIC to address the problems of increasing numbers of visits, lengthening stays, and inadequate specialized intermediate care for people with ASD in our psychiatric ED. The APIC team consists of a child psychiatrist medical director, a clinical director, an office manager who also serves as a Spanish interpreter, and a community integration specialist. APIC provides a mobile team that implements evidence-based behavioral and pharmacologic interventions in the residence (home, group home, or residential treatment facility) (11). This mobile approach reduces the challenge that improved behavior in a specialized treatment setting may not transfer to the patient’s living situation. To maximize this specific benefit of the APIC approach, we involve families and other caretakers in every intervention. For patients initially encountered in the Comprehensive Psychiatric Emergency Program (CPEP), our goal is to facilitate their discharge by assisting with emergency behavioral management, reducing disruption of caretakers’ lives, and providing continuity of care in the community. APIC staff are prepared to provide the same interventions for inpatients. However, because our ED provides 24-hour comprehensive care by psychiatrists, nursing and social work staff, and physician extenders, patients with ASD can remain in the ED long enough to find alternatives to hospitalization, and no patients in our initial study population were hospitalized at our institution.

Individuals with ASD are referred to APIC when their behavioral problems place them at imminent risk for unnecessary involvement by the emergency medical or legal systems, as indicated by an ED or hospital admission, frequent urgent calls of the family to agencies or police, problems finding or keeping a placement, or caretaker willingness to accept an out-of-home placement within 1 week. To provide sufficiently early and comprehensive interventions that could avert emergency institutional care, we developed a novel cross-systems navigation model. In this model, the APIC team assesses the clinical needs from individual, family, and systems perspectives to identify and remove barriers to accessing appropriate levels of care, mobilize resources, and provide transitional intensive outpatient care while a comprehensive long-term treatment plan is implemented.

During the first year (2015–2016) of this 5-year pilot project, APIC staff worked with 126 individuals ages ≤26 years with intellectual or developmental disabilities referred by the ED or by local agencies, including law enforcement, the county wraparound service, the county crisis intervention team, and the local Office for Persons with Developmental Disabilities. Of these patients, 41 with an ASD diagnosis and residing in the same county (to permit comparison of clinical and economic data) were included in this analysis. We conducted a retrospective pre-post cost-benefit analysis for these patients, comparing outcomes during the last year of treatment in the community with prospective outcomes of the same group for 1 year after APIC engagement. The University at Buffalo Institutional Review Board declared our data analysis exempt from review.

Outcomes

The mean±SD age of the patient sample (N=41) was 15.1±4.4 years (range 5–24; 83% were male, N=34). Caregivers’ ages ranged from 27 to 75 years (47.5±8.3). Most patients (81%, N=33) were Caucasian, 20% (N=8) were African American, one (2%) was Asian, and one (2%) was Hispanic. Of these patients, 32 (78%) lived in private homes, six (15%) in individual residential alternatives, two (5%) in apartments, and one (2%) in an intensive care facility. Most patients (81%, N=33) attended specialized schools, and 20% (N=8) were enrolled in public school and received individualized education programs. Of 40 patients with relevant data, 26 (65%) had interacted with the legal system, usually because of assaultive or destructive behavior, with a few instances of trespassing and theft.

The mean duration of the APIC intervention was 264.5±177.9 days (range 30–650 days) per patient and included 2.9±2.5 mobile visits (range 0–10). APIC took over medication prescriptions for 21 of the 41 study patients (51%). This care primarily involved limiting medications with significant anticholinergic and metabolic adverse effects and occasionally adding or substituting treatment for unrecognized or inadequately treated co-occurring psychotic or mood disorders.

Across the intervention, scores on the Clinical Global Impressions–Severity (CGI-S) scale decreased by 29%, from 4.4±1.2 to 3.2±0.6 (two-sided paired t test, t=8.81, df=36, p<0.001; Wilcoxon signed-rank test confirmation, p<0.001). The CGI-Improvement (CGI-I) scale score confirmed significant improvement at 2.2±0.8 (t=17.21, df=36, p<0.001; Wilcoxon test, p<0.001). The Pearson product-moment correlation coefficient between the final CGI-I and the CGI-S change was 0.75, supporting improvement in overall status. Scores on the Family Distress Scale declined by 42%, from 7.4±1.9 to 4.3±2.1 (t=12.33, df=36, p<0.001; Wilcoxon test, p<0.001).

The number of patients with ASD seen in the ED did not change during the study period. However, the amount of time a patient spent in the ED significantly decreased. For 13 patients (33%) who had ED visits, the mean visit duration was 315.6±492.9 hours preintervention and 298.2±942.6 hours postintervention, a 6% reduction. This figure likely underestimates the reduction in length of stay because the data included two outliers. One patient spent 1,497 hours in the ED during the preintervention period, and another spent 3,423 hours postintervention. In both cases, the long stays resulted from lack of a disposition and not from the patients’ clinical status. When we excluded these two cases from the estimated average pre- and postintervention utilization hours, the average ED length of stay was 217.2±357.2 hours (N=12) preintervention, and the average CPEP length of stay was 50.4±98.3 (N=12) postintervention, a reduction of 166.7 hours or 77%.

The direct cost of the APIC intervention for year 1 of the program (calculated by dividing the total cost of salaries, mileage, technology, travel, and supplies by the total number of treated patients) was $1,700 per patient. The cost of an ED visit is $1,900 per day, or $79.17 per hour. Considering the 166.73-hour reduction in average hours in the ED associated with the APIC intervention, the direct cost saving was $13,200 ($79.17×166.73 hours). After removing the patient with outlying data in the pre-APIC period (which reduced the sample size to 40) and calculating the average ED hours for 12 cases, we found that the baseline probability that a participant would visit the ED was 30% (12 of 40). On the basis of this calculation, the direct benefit generated by the APIC intervention on a per-patient basis was $3,960 (0.3×$13,200 per patient). The difference between direct benefit and direct cost was therefore $2,260 ($3,960 – $1,700) per patient per year. Alternatively, the total ED hours for the 40 participants (excluding the patient with outlier data) before the intervention was 2,606 hours, and the total ED hours for the 40 participants (again, excluding the same patient) following the intervention was 454 hours. For the difference of 2,152 hours, the cost savings was $79.17/hour × 2,152 hours = $170,374, or $4,259 ($170,374/40) per patient. Accordingly, the net benefit was $2,559 ($4,259 – $1,700) per patient per year.

Discussion and Conclusions

The results of this pilot study suggest that the APIC program may benefit both patients and caregivers. Scores on both the CGI and measures of family stress improved, and all patients were transferred to ongoing outpatient maintenance treatment. Patients with frequent ED visits spent less time there, because APIC facilitated more rapid discharge to intensive outpatient care, resulting in substantial cost savings. Our ED is a specialized psychiatric ED with staff trained in providing care to agitated patients; the clinical and cost benefits of facilitating the discharge of patients with ASD from general medical EDs with less expertise in managing such patients would be even greater. Savings would also be expected to be greater for patients who can avoid an ED visit or a hospitalization. We expect that additional data will soon be available from a larger sample that will include both hospitalizations and ED visits.

For most participants, behavioral interventions were sufficient, but to improve the behavior of some patients, it was necessary to substitute more appropriate medications for combinations of psychotropic medications that were causing confusion or disinhibition or were not directed at comorbid disorders. Intensive interactions with caretakers appeared to reduce feelings of isolation and helplessness and provided caretakers with individualized skill building in behavioral management, which increased the range of interventions available to the clinicians. Parents of autistic children have chronic stress comparable to that of active duty combat veterans and often have a low threshold for going to the ED for behavioral deterioration when other resources are not readily available (12). As caregivers felt more confident, patients felt calmer and became more responsive to interventions.

We note that this study was not a randomized controlled trial, and we analyzed data from only a preliminary subset of patients from the pilot phase of the APIC program for whom complete information was available. We were unable to obtain details about medical and legal outcomes, outpatient costs, and opportunity costs of patients’ and caregivers’ time. Nevertheless, these preliminary data suggest that a mobile team can provide comprehensive, individually tailored interventions for patients with ASD who are at high risk for acute deterioration. Our initial experience suggests that the APIC intervention has the potential to generate significant cost savings, particularly for patients with frequent hospitalizations or ED visits. The APIC program now has received funding from county and state sources that replaces start-up grant funding, so we are collecting prospective clinical and economic data on more severely ill patients to determine cost savings from multiple sources and to evaluate whether the financial benefits are accompanied by enhanced quality of life (e.g., nonfinancial benefits for the family due to a decrease in the amount of time required for addressing emergency needs of the family member with ASD). To limit overinterpretation of apparent cost savings in future studies, we are working to develop access to data from concurrent and historical matched persons not treated by APIC who serve as a control group.