Persons With Intellectual and Developmental Disabilities in the Mental Health System: Part 2. Policy and Systems Considerations

Despite improvement over time in distinguishing mental health conditions and IDD and enhanced abilities to triage care for patients with IDD, barriers remain. Individuals with co-occurring IDD and mental health conditions need integrated multidisciplinary supports that, in the main, demand collaboration across services that are mandated, regulated, and financed by siloed offices, administrations, divisions, or departments of state governments. For more than a century, public institutions dominated state responses to treatment of persons with IDD and of persons with mental illnesses, and departments of mental health that operated both services were the norm. Reform legislation that heralded the era of community care was named the Mental Retardation and Community Mental Health Centers Construction Act of 1963 (14). As state agencies continued to operate with mandates to serve both populations, new community centers worked to serve both populations between the 1960s and 1980s. The rapid growth of community-based systems of care, combined with the demanding work of responding to multiple class-action lawsuits on conditions at the state schools and state psychiatric hospitals, greatly added to the work and budgets managed by state departments of mental health. In addition, community mental health agencies began to focus on development of community services for persons leaving state hospitals.

As community services grew, advocacy organizations dominated by “The Arcs” developed a major presence as providers dedicated to persons with intellectual developmental disorder and began advocating for separate departments responsible for administering the federal waivers providing services for persons with IDD. After decades of administrative restructuring, budget migration, and concomitant narrowing of eligibility criteria, state IDD and mental health authorities carry out their responsibilities for financing, delivering, and monitoring publicly funded programs in ways that vary considerably from each other and from one state to another. Additional variation is imposed by the choices that states elect in the Medicaid program—the state plan elements, plan options, or waivers that best suit a state’s needs and interests. Despite the fact that people with IDD and co-occurring mental health conditions constitute an estimated one-third (32.9%) of the total number of persons served by IDD agencies, organizational structures, eligibility rules, clinical programs, and financing tactics are largely separate (15). The National Association of State Directors of Developmental Disabilities Services (NASDDDS) works diligently on behalf of state leaders to stay abreast of policy advances and challenges and coordinate training and information sharing. During the COVID-19 pandemic, for example, NASDDDS held regular webinars, group conversations, and other events to help leaders in disabilities services have the latest information and advocated for the needs of the populations served, as well as others, including system leaders, the direct service workforce, and other stakeholders. A recent overview found that of the 51 state authorities serving persons with IDD, only six are divisions that are still within departments of mental health, nine are stand-alone departments of developmental disabilities, and 36 are offices or divisions within larger state executive offices, agencies, or departments of health, human services, or social services (16).

The more pervasive fragmentation of program authority and resource control that characterizes today’s bureaucratic landscape poses significant barriers for persons with IDD who may have a co-occurring mental disorder or those with ASD who may have a co-occurring mental disorder or intellectual developmental disorder. Guidelines for eligibility issued by state agencies, divisions, or offices are not clearly aligned across entities in many states; such alignment would ensure that no one is excluded and that persons with co-occurring conditions are included. Since the economic downturn of 2009, state agencies of all types narrowed eligibility criteria to manage within tighter budgets, exacerbating the problem. In some states, persons with ASD, for example, were excluded from either the mental health or the developmental disability agency guidelines. Recent advocacy in several states has pushed for more inclusion of services for individuals with ASD. Financing is further fragmented, however, and program eligibility, waiver requirements, and coverage criteria limit flexibility in resource application. The eligibility challenges combined with the financing challenges are made more difficult to resolve by an absence in many jurisdictions of clear protocols for managing co-occurring conditions. High-level strategies to jointly solve problems related to resource allocation could ultimately benefit the individuals in need across systems.

The National Association for the Dually Diagnosed (NADD) is an association for persons with IDD and mental health needs that provides access to policy papers and practice guidelines that may be of assistance to states (17). In 2007, NADD collaborated with the American Psychiatric Association on the publication of the Diagnostic Manual–Intellectual Disability (DM-ID), a text guiding diagnosis of mental disorders among persons with IDD (18, 19). With the publication of DSM-5, NADD developed updated guidance for practitioners and a second edition, DM-ID-2 (20, 21). Yet, even with this addition to the clinical armamentarium, willing clinicians are hampered in their treatment of this population by the lack of systemic infrastructure.

The need for intersystem collaborative approaches to working across mental health services systems and those systems more specifically focused on serving persons with IDD is well recognized. Acknowledgment that these individuals will and do appear in mental health services should, in principle, guide implementation of collaboration protocols and staging of clinical settings. Guidelines that promote cross-collaboration should take advantage of work in this area, such as strategic planning done for workforce development by the NADD (22). Intersystem collaborative efforts for persons with IDD should also take into account the confluence of race, structural racism, and social determinants of health in designing prevention, identification, and support options. This is an area that warrants further study.

Although there are differences in the legislative intent and management of state appropriations that flow to various agencies with discrete responsibilities for either persons with IDD or persons with mental health conditions, federal Medicaid funds to the states flow to persons with eligibility. Most persons with IDD with the co-occurring mental health conditions noted above are Medicaid eligible. However, as described above, most states finance HCBS through federal waivers available under the Section 1915(c) Medicaid waiver program and the 1915(i) state plan option that allow coverage of a wide array of community-based habilitative interventions and residential supports but that are typically not defined to target individuals with co-occurring conditions. For example, states that have expanded use of the provision for self-directed personal care through 1915(j) state plan services or 1915(k) Community First Choice personal care option can support individuals to live in their homes, but these provisions do not incorporate psychiatric care benefits. Psychiatric benefits must be accessed through the individual’s broader eligibility for Medicaid benefits (state plan Medicaid), with use of medical necessity criteria to determine the level of care provided. Moreover, the benefits are typically administered by different entities, with the waivers administered directly by either the state Medicaid program or the developmental disabilities administration, and the behavioral health benefits are often carved out to third-party management under the purview of the SMHA or the state Medicaid program. In addition, several state authorities have adopted Money Follows the Person and Balancing Incentive Payment programs; these programs provide increased federal financing for HCBS, but they do not integrate psychiatric care benefits.

Under the terms of the ACA, new emphasis was placed on the coordination and integration of care for populations with complex needs. For example, health homes are an optional state plan service designed to improve care coordination across primary, acute, behavioral health, and long-term services and supports (LTSS) for individuals with two or more chronic conditions. States may target health home services to individuals with IDD who have co-occurring mental health conditions. Arizona, Michigan, North Carolina, and Wisconsin, among others, operate managed LTSS for persons with IDD (17). Some states have or are in the process of expanding the role of carve-out managed behavioral health organizations to manage care for persons with IDD, a development that presents the opportunity to better coordinate and integrate care for those with co-occurring conditions, as has been planned for some Section 1115 waivers.

Another emerging opportunity is the activity in states to implement managed LTSS in the context of developing accountable care organizations (ACOs). According to the NADD report (23), several states, including Massachusetts, Maine, New York, Minnesota, and Oregon, were contemplating or had implemented Section 1115 waivers with provisions for ACOs and LTSS management. Over the past 30 years, states administered aspects of their Medicaid programs by using managed care organizations (MCOs), mainly to manage primary care and behavioral health specialty care under Section 1903(m) of the Social Security Act. Over the past decade, states have also tested the utility of MCOs for management of care for persons with IDD, with advocates urging continuation of tested provider networks and strong state oversight of the MCOs. As some states adopt new Section 1115 waivers and other ACA provisions noted above, they are leapfrogging over MCOs to implement ACOs and tie ACOs to LTSS provider networks to deliver better integrated and managed care to persons with IDD who need LTSS. This is occurring at the same time as Medicaid programs are forging similar partnerships between ACOs and behavioral health provider networks. This development poses new challenges and opportunities for the integration of care for persons with co-occurring conditions.

Although mental health care settings vary in their missions—the correctional setting is a major outlier—approaches to supporting clinicians in the work of evaluating persons with IDD share some features across all treatment environments (22). EDs deserve special considerations, because the ED is where individuals who have experienced both treatment failures and environment support failures arrive to be assessed. Factors underlying these failures must be identified and remedies prescribed. As a result, the ED is where major conflicts arise, as the individual with IDD and in crisis meets a crisis system that is admittedly ill equipped to meet his or her needs. As noted, often neither the SMHA nor the state developmental disabilities administration understands the basic underpinnings of the other’s system, and the systems simply do not share enough of the same knowledge to make problem solving an easy process in the setting where the person is receiving services. The following sections are focused on what can be done to improve the capacity of mental health system providers to work with persons with IDD.

Clinicians should have a treatment environment that optimizes a therapeutic frame as well as safety for them and the person in crisis. Conducive treatment environments consider the physical environment of the treatment setting, the training and demeanor of the treatment staff, and advance knowledge of both treatment strategies and existing supports for people in this population (24, 25). Although 85% of persons with IDD have mild intellectual impairment, mild impairment does not necessarily translate to a need for fewer accommodations. Because of the heterogeneity of the population (25), the assessment of needed accommodation is determined on a person-by-person basis. Given the growing societal and legal expectation of full inclusion of persons with IDD, these preparations can no longer be viewed as optional (26). Environment triggers of undesirable behavior can result from intolerance of fluorescent lighting, small spaces, ambient noise, or overstimulating environments. Certainly, all treatment providers are limited by the architectural space provided to them, but steps can be taken to mitigate light and sound challenges within most environments. Involving self-advocates from the local developmental disabilities council may help treatment settings self-assess their environment and may provide an opportunity to interact with persons with IDD who are not in the midst of a health crisis. Having more integrated exchanges with self-advocates provides staff, who may see persons with IDD only in crisis, an opportunity to see the benefits of more optimized inclusion.

Training of diverse frontline clinicians in both clinical and system strategies is necessary for improved care. It is not uncommon, however, for staff in the mental health and health care systems who have direct contact with the IDD population to feel unprepared to care for these individuals. Frontline staff along with mental health staff often have limited training to provide professional support and treatment interventions for persons with IDD. For example, the Accreditation Council for Graduate Medical Education (ACGME) requirements for board certification of general psychiatrists and ED physicians do not list a specific requirement for competency or clinical experience with this population (27, 28). Training requirements for pediatricians list clinical exposure in neurodevelopmental disabilities as an area that can be part of training, but such training is not absolutely mandated (29). In contrast, the ACGME board certification guidelines for child psychiatry require demonstrated competence and an “organized educational clinical experience” in intellectual developmental disorder or developmental disorders (30). Despite these gaps, state mental health administrators often rely on evaluations by clinicians in the trenches to resolve system conflicts, although these very clinicians may not have a firm grip on parsing a complex presentation. Further, without proper training, these clinicians could direct large sums to be spent on providing the wrong treatment. Therefore, a better-trained workforce is needed to help support successful outcomes for individuals with IDD.

Training enhancements for workforce development could also be offered in important topical areas throughout a clinician’s professional career. For example, one area of focus might include fostering patient engagement skills that are most likely to optimize efficient and effective assessment and information transfer. A recent online CME training on this topic, available through OptumHealth advocates and using the training acronym RAFT (respect, accommodation, follow-up, time), might be a beneficial beginning in raising awareness of how best patient engagement can occur with this population (31).

Although identifying and correctly treating co-occurring psychiatric and somatic illness is a significant contributor to long-term success, most parents and experts in the field will agree that for persons with IDD who require caretaker support, a more than substantial part of their quality of life is dependent on their caretakers (32). The term “direct service professionals” (DSPs) reflects this important professional role. This term also emphasizes the need for DSPs to have sufficient training and the necessary demeanor and deportment to provide quality service, although it is generally acknowledged that the pay scale offered for these positions often does not attract individuals with a career focus on becoming a DSP, which reflects another barrier that states are beginning to examine.

Ideally, critical training for DSPs includes understanding positive behavior supports (PBSs) and applied behavior analysis (ABA), as well as an emphasis on maximizing a positive environment. PBS has spread even to forensic psychiatric settings (33). PBS connotes an emphasis on choice and control for persons with IDD, who are supported by caretakers able to teach skills necessary to achieve communication goals to persons with IDD who are currently achieving their communication goal with nonadaptive behavior. A functional behavioral assessment and a behavioral plan developed with the specialized skills of an appropriately trained professional or board-certified behavioral analyst can create and augment an environment that supports PBS and that can be managed by DSPs.

Trauma-informed care is also a critical training element for DSPs, because the severe, out-of-proportion, affective dysregulation resulting from a trauma history often confounds positive relationships with caretakers and thus the provision of PBS. Too often, EDs and mental health clinicians are called to be the solution when environment supports have broken down. Counterproductive polypharmacy and placement standoffs can easily develop when an individual’s behavior is poorly understood, which then can be played out in acute treatment settings. Well-trained DSPs able to convey relevant data to clinicians are more likely to avoid these confounds.

Progress in workforce development for those supporting persons with IDD includes formal training in ABA and signifies an advancement in the field (33, 34). Examples of additional efforts to help expand the skills of this workforce include several national programs. The NADD has a comprehensive workforce development program through its accreditation and certification programs, developed in collaboration with the NASDDDS, which includes opportunities for professional work to be reviewed and certified through a peer-review process (22). START (systemic, therapeutic, assessment, resources, and treatment) is a research-based comprehensive model of services utilized in many states and recognized as evidence-informed and a best practice (35). START uses an apprenticeship model and national database to support caretakers while also incorporating a systems linkage approach to service provision. The Center for START Services is based at the University of New Hampshire Institute on Disability/University Center for Excellence in Disability. Offerings from the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) continue to advance workforce capacity (36). LEND programs provide “long-term, graduate level, interdisciplinary training,” with a goal of improving the health of infants, children, and adolescents with disabilities. LEND programs operate through university systems and aim for trainees to assume leadership roles in their careers. In addition, the Developmental Disabilities Assistance and Bill of Rights Act of 2000 mandated the creation of University Centers for Excellence in Developmental Disabilities, which are components of a university system or public, not-for-profit entities associated with universities that provide interdisciplinary training to students and professionals with the goal of directing services and supports to people with disabilities of all ages and their families (37).