Inter-agency coordination related to co-occurring intellectual and developmental disabilities and mental health conditions

Abstract

Objective:

This study aimed to identify barriers to and strategies supporting state intellectual and developmental disability (IDD) and mental health agency coordination in meeting mental health needs for people with co-occurring IDD and mental health conditions.

Methods:

Forty-nine state IDD and mental health agency and advocacy/service delivery organization employees across the eleven states with separate IDD and mental health agencies were interviewed between April 2022 and April 2023. Data were analyzed using a thematic analysis approach.

Results:

Interviewees relationships between the IDD and mental health agencies as being characterized by both competition and coordination, with coordination primarily taking place in response to crisis. Barriers to inter-agency coordination included distinct focal populations, within-state variation in agency structures, and a lack of knowledge about co-occurring IDD and mental health conditions. Interviewees also describe both administrative (e.g., memorandums of understanding) and cultural (e.g., focusing on whole person care) that are or could be employed to better support coordination related to mental health services for people with both IDD and mental health conditions.

Conclusions:

Strategies that support state agencies moving away from crisis response and toward a focus on whole person care should be prioritized in supporting coordination of mental health services for individuals with co-occurring IDD and mental health conditions.

1. Introduction

More than one third of the seven million people in the U.S. with intellectual and developmental disabilities (IDD) have a co-occurring mental health condition.¹ Despite the increased prevalence of mental health conditions among this population compared to the general population, people with IDD face significant barriers in accessing mental health services.^2–5 A recent expert panel convened by the Substance Abuse and Mental Health Services Administration (SAMHSA) identified separation of state agencies responsible for IDD and mental health services, with limited inter-agency coordination, as one key barrier to mental health services for this population.⁶

In all states, IDD and mental health service agencies are responsible for distinct arrays of services for individuals who meet their specific eligibility criteria (e.g., a diagnosis of IDD or autism spectrum disorder for IDD services).⁴ Through their roles as regulators and funders, agencies also have important downstream impacts on service delivery organizations and individual providers within their state.^4,5,7 As of December 2022, eleven states have agencies even more separated, with IDD and mental health authorities housed in completely different areas of the state administrative organization (https://www.nasddds.org/state-agencies/ and https://www.nasmhpd.org/commisioners_edit). The greater the separation between agencies’ authority and resources, the greater the barriers to collaboration between these systems may be.⁴

A lack of coordination across IDD and mental health state agencies and the service systems they regulate has detrimental effects for people with co-occurring IDD and mental health conditions. Fragmentation of these sectors often results in individuals receiving care from providers not familiar with their needs (e.g., mental health providers unfamiliar with IDD) and places significant burden on individuals seeking treatment to navigate across multiple systems.^4,5,8 These barriers ultimately contribute to underdiagnosis and undertreatment of mental health conditions among individuals with IDD and lower quality of mental health care when services are received.^2,5,9,10

Existing research focused on inter-agency coordination between mental health agencies and other state-level agencies (e.g., child welfare, addiction, public safety) has shown positive effects of coordination on access to mental health services for individuals with complex service needs. Inter-agency coordination strategies such as funding dedicated to collaboration, regular communication between agencies, and agency leadership supportive of coordination efforts are associated with improved access to mental health services for children involved in the welfare system,^11–13 individuals with co-occurring mental health conditions and substance use disorders,^14,15 and people involved in the criminal legal system.^16,17

While increasing inter-agency coordination has been advocated for by SAMHSA and other stakeholders to improve mental health services for people with co-occurring IDD and mental health conditions, to date, research has not focused on coordination between state IDD and mental health agencies.^4,6 The present study aims to fill this gap by identifying barriers to and strategies supporting state IDD and mental health agency coordination in the context of meeting mental health service needs for individuals with co-occurring IDD and mental health conditions.

2. Methods

2.1. Sample, recruitment, and instrument

To characterize inter-agency coordination related to mental health services for individuals with co-occurring IDD and mental health conditions, we conducted semi-structured interviews with key stakeholders in the eleven states where mental health and IDD agencies were completely separate (i.e., not under the same umbrella agency) as of 2022: Arizona, Connecticut, Florida, New Mexico, New York, Ohio, Oklahoma, Oregon, South Carolina, South Dakota, and Tennessee. This sampling approach allowed for variation in included states by region, population size, and state government political party as well as inclusion of both independent agencies and agencies that are part of different umbrella agencies. For example, in Tennessee, the IDD and mental health agencies are both stand-alone departments while in New Mexico, the two agencies are both part of larger umbrella agencies (the IDD agency is within the state Department of Health while the mental health agency is within the state Department of Human Services).

Key stakeholders included individuals in state IDD and mental health government agencies and advocacy organizations (e.g., state chapters of the Arc and the National Alliance on Mental Illness). We aimed to understand barriers and strategies from the perspective of individuals in the agencies themselves and from the perspective of individuals who may be working more directly with and on behalf of people seeking services through state agencies.

Potential interviewees were identified using a combination of purposive and snowball sampling. We initially contacted individuals in leadership roles in the government and advocacy agencies of interest by email, explaining the study and inviting them to participate and to recommend others with relevant knowledge in their state. All potential interviewees were contacted by an initial email explaining the study’s purpose and goals. Two follow-up emails, each one week apart, were sent to non-responders. Interviews were conducted until there were no more recommendations for potential interviewees representing the target organizations in each state.

A common interview guide was used across all interviews. Development of interview guides were informed by prior literature on public agency coordination.^18,19 Questions focused on the relationship between IDD and mental health agencies in meeting mental health service needs for people with co-occurring IDD and mental health conditions, barriers to inter-agency coordination related mental health services for this population, and coordination strategies states have employed or would employ to better meet mental health service needs for those with both IDD and mental health conditions. The full interview questionnaire is included in Appendix A.

One study team member conducted all interviews. Interviews were conducted with the Zoom videoconferencing platform or over the phone, at the preference of the interviewee, between April 2022 and April 2023. All interviews were audio recorded and transcribed for analysis; verbal consent was obtained at the beginning of each interview prior to recording. Transcripts were reviewed and validated against the audio recording and identifying information was removed prior to analysis. The median interview length was 22 minutes (range: 12 minutes to 59 minutes).

2.2. Analysis

Transcripts were analyzed using a hybrid inductive/deductive coding approach. A memo was drafted after each interview to summarize key points. Summary memos and prior literature on agency coordination were used to develop an initial codebook. Two study team members pilot tested the initial codebook by independently coding a sub-sample of five interviews. The codebook was refined in an iterative process with input from study team members and the final codebook was used to code all transcripts. The remaining transcripts were divided between the two study members for independent coding, with regular meetings to discuss coding and ensure consistency. After all transcripts were coded, codes were arranged into themes and sub-themes and representative quotes were identified. Eleven randomly selected interviewees (one per state) were asked to review preliminary themes as part of the member-checking process. Transcripts were coded using Nvivo.²⁰ This study was approved by the Johns Hopkins Bloomberg School of Public Health Institutional Review Board.

3. Results

We conducted 43 interviews with 49 interviewees in the eleven states with separate IDD and mental health agencies between April 2022 and April 2023 (four interviews included multiple interviewees) (Table 1). The median number of interviewees in each state was 5 (range: 3 to 6). Interviewees were evenly split between state government agencies (51%) and advocacy or service delivery agencies (49%). Most interviewees worked in the IDD service sector (69%). Among interviewees who shared demographic information, most were women (71%) and white (89%). On average, these interviewees had worked with people with IDD and/or mental health conditions for more than 20 years and had worked in their current position for 9 years. Across states and sectors, interviewees discussed similar themes regarding the relationship between state IDD and mental health agencies and barriers to and strategies for coordination.

Table 1.

Interviewee characteristics (N=49)

Demographic characteristics		N
Gender1
	Female	25
	Male	9
	Non-binary	1
Race/ethnicity1,2
	Black	1
	Hispanic	3
	White	31
Educational background1
	Clinical (e.g., MD, MSN, MSW)	9
	Education (e.g., MEd)	3
	Legal (e.g., JD)	6
	Research (e.g., PhD)	7
	Other (e.g., Bachelor’s degree)	10
Number of years worked in sectors related to individuals with IDD and mental health conditions1 (mean)		22.2 years
Number of years worked in current position1 (mean)		8.7 years
Agency type
	Advocacy or service delivery agency	24
	State government agency	25
Primary service sector
	Intellectual and developmental disabilities	34
	Mental health	15
State
	Arizona	3
	Connecticut	3
	Florida	6
	New Mexico	6
	New York	6
	Ohio	5
	Oklahoma	3
	Oregon	5
	South Carolina	5
	South Dakota	3
	Tennessee	4

¹N=14 interviewees elected to not provide demographic information

²Categories are not mutually exclusive

3.1. Relationship between state IDD and mental health agencies

Interviewees consistently described state IDD and mental health agencies as operating within conflicting relationship dynamics where agencies were seen as being in competition with each other while also recognizing the need to coordinate across their systems (Box 2). Agencies were described as primarily being in competition for funding. The general perception was that IDD agencies were “better off” than their mental health counterparts due in part to individuals with IDD being a “more sympathetic” population and less stigmatized than individuals with serious mental illnesses, resulting in more support for their services. This perception contributed to mental health agencies being reluctant to serve individuals with both IDD and mental health conditions, in part to conserve their own resources and in part because the IDD agencies are seen as being better able to serve this population.

Box 2.

Relationship between state intellectual and developmental disability and mental health agencies

Key themes and sub-themes with representative quotes
Competition	I think it’s more a matter of scarce resources that the mental health system has always looked at it like the developmental disabilities has the best of everything, as far as the way things are funded. 08–01 Part of it is there’s competition with both agencies to get funding from the state, and of course, matching funds or funds from the federal government as well. So, they’re protecting their budget and their list of consumers. 06–04
Coordination	Whenever we have, especially a case that presents more challenges than usual, we’re very quick to pull them in and collaborate together to pick the best circumstances, the best placement for them as a system, rather than two different departments. 10–02 [The IDD agency] does have like a crisis program, like if someone’s struggling you can contact them, and they’ll have somebody join your meetings and try to give you some recommendations. Mostly it’s been, you know, call the mobile mental health. 08–05
Informal, case-by-case coordination	More administrative state agencies get involved on cases where somebody may not fit the profile specifically for an agency… it arises to a higher level of trying to determine where this person’s needs are best met in terms of state services. It gets challenging. 01–01 When the [mental health agency] becomes aware of a case of someone who has intellectual disability, then they reach out to [the IDD agency], so it’s really because the acuity level becoming so high for some of these individuals. 05–01
Formal crisis response systems	Our new crisis system that we’re implementing as part of 988 will have specific language requiring folks to have specific training in IDD. 04–03 [The IDD agency] has a program they called START, and these calls are by and large persons who have the co-occurring mental health-IDD issues. You develop a series of responders and coordinate the response so that people don’t fall through the cracks. 10–03

Quotes from semi-structured qualitative interviews with state IDD and mental health state agency and advocacy or service delivery organization leaders (N=49) in the 11 states with separate IDD and mental health agencies (AZ, CT, FL, NM, NY, OH, OK, OR, SC, SD, and TN) conducted April 2022 to April 2023. Unique identifiers were randomly assigned and indicate the range of states and respondents included in the selection of representative quotes.

Despite this oppositional relationship, interviewees recognized the need for coordination between mental health and IDD agencies. Interviewees described coordination-based relationships as primarily existing in areas of crisis response. This occurred both in informal, case-by-case coordination where an individual would rise to a level of concern in both IDD and mental health agencies based on their acute condition and in more formal crisis response systems including the 988 suicide and crisis hotline and programs such as START, an evidence-based crisis prevention program developed specifically for individuals with co-occurring IDD and mental health conditions (https://centerforstartservices.org/START-Model).

3.2. Barriers to coordination between state IDD and mental health agencies

Interviewees described three main barriers to coordination between state agencies in meeting mental health service needs for individuals with both IDD and mental health conditions (Box 3). First, the distinct focal populations each agency is tasked with serving. For IDD agencies, eligibility for services was based on IQ score (usually below 70) or autism diagnosis prior to age 21. For mental health agencies, eligibility was based on a primary diagnosis of a severe and persistent mental illness (e.g., schizophrenia or bipolar disorder). The need for classifying individuals as having a single, specific primary diagnosis was primarily driven by restrictions on funding and resulted in a lack of agency “ownership” or responsibility for individuals with co-occurring conditions. Interviewees described mental health and IDD agencies passing individuals back and forth between service systems, needing to assign behaviors or symptoms to either the IDD or mental health diagnosis, and debating which agency is responsible for providing and paying for an individuals’ services. Beyond separate eligibility criteria, in some cases having one condition was disqualifying for services from the other agency. Several interviewees referred to use of this exclusionary criteria by mental health agencies as a discriminatory practice based largely on lack of knowledge and/or lack of willingness to work with individuals with IDD.

Box 3.

Barriers to coordination between state intellectual and developmental disability and mental health agencies

Key themes and sub-themes with representative quotes
Distinct focal populations	It’s more about getting the label, who is going to be responsible. “If we can get that guy’s IQ below 70, we’ll get him into the [IDD] system,” or, “If we can get the right diagnosis of acutely psychotic, we can get him into [the mental health agency].” 01–03 We have two different agencies… and so the problem is that you can’t access both services, and for this intersectionality where there is a developmental disorder but also a significant and kind of chronic psychiatric issue you’re really in this kind of weird place. 08–04
Primary diagnosis requirements for funding	There’s always this need for a system to “own” a person… even though people talk about co-occurring disorders, they want to make one the primary diagnosis, when in fact, for some people, really, they’re both. 02–02 Well, we have two programs, two grants, one for each population and even the federal grants are very fussy about the possibility of using mental health money to address a deep developmental disability issue and vice versa. 07–01
Exclusionary criteria for services	Where the problem seems to lie is that our [mental health agency] is very reluctant to serve anyone with IDD who also has a co-occurring mental health diagnosis. In fact, most refused to serve anyone with a cognitive disability. 07–01 Usually just autism and intellectual disability are rule-out criteria for a lot of places with regards to treatment. I mean, there’s hospitals that their rejection for admission criteria sometimes is “The person has IDD.” 10–04
Within-state variation in agency structures	We have lots of entities that are regionally responsible for implementing the Medicaid system. So we are, as [the mental health agency], the contract holder for them. And then in addition, we have our county partners or the local mental health authorities. 04–03 To a large extent [the IDD agency] is not truly run at the state level, but as different regional areas. They’re very much little fiefdoms.11–03
Lack of knowledge about co-occurring IDD and mental health conditions	The biggest barrier is the narrative that [people with IDD] don’t need [mental health services] because that stops the IDD system for even asking for it. And then it stops [the mental health] system from feeling a responsibility. 04–03 It’s like your IDD providers stigmatize the mental illness. And then on the other side, you have your mental health providers that, don’t like to provide services to our IDD population. It’s like a double-edged sword once you put the two together. 07–03
Diagnostic overshadowing	We frequently run into with people with IDD where it’s really hard to tease out the exact mental health disorder that’s occurring… the behavioral issues emerge and typically, “Well, that’s a development disability problem, not a mental health problem.” 03–03 It’s really difficult for practitioners to not just lump somebody with IDD in with anything they’re experiencing has to do with that. And not compartmentalize it in terms of, maybe the behaviors they’re exhibiting are related to something else, mental health. 09–04
Ability to accommodate various levels of support needs	Nobody knows how to do therapy with someone who has a [communication] device… And then the high functioning, looking at building social capacity and executive functioning so they can be successful, [services are] non-existent. 03–02 [For mental health services,] they’re like, “Well, if the person can’t engage in talk therapy, then they can’t access med management services through us…” and then the door is shut in their face based on their communication needs and supports. 04–01
Experience working with the population	It’s really trying to make sure that the mental health providers are equipped to support someone with dual diagnosis and the IDD providers understand the mental health aspects and needs of a person with IDD, and so that has been a challenge. 02–01 There’s an education barrier. There is a barrier to people recognizing that people with IDD can have all of the same mental health conditions we can. They are often undiagnosed and untreated. 10–04

Quotes from semi-structured qualitative interviews with state IDD and mental health state agency and advocacy or service delivery organization leaders (N=49) in the 11 states with separate IDD and mental health agencies (AZ, CT, FL, NM, NY, OH, OK, OR, SC, SD, and TN) conducted April 2022 to April 2023. Unique identifiers were randomly assigned and indicate the range of states and respondents included in the selection of representative quotes.

Second, in addition to operating within their own silos at the state level, many mental health and IDD agencies described decentralized sub-state (i.e., regional, county, or city) level agencies or entities. Each sub-state agency had unique relationships with the state-level agency and with the local mental health or IDD counterpart resulting in significant variation in opportunities for coordination by locality.

Finally, a lack of knowledge among both IDD and mental health sectors about how to meet mental health needs of individuals with co-occurring IDD and mental health conditions compounded other barriers to coordination. Underlying this lack of knowledge across systems are three sub-themes. First, diagnostic overshadowing, or the belief that individuals with IDD cannot or do not experience mental health concerns and, therefore, all “behaviors” are related to the IDD diagnosis was described by interviewees in both IDD and mental health sectors.³ Second, agencies and providers lacked capacity to support the range of needs of individuals with IDD (e.g., ability to modify mental health treatment delivery for people with IDD who use alternative communication devices or are non-speaking). And finally, both IDD and mental health agencies lacked experience working with individuals with co-occurring conditions resulting in a lack of knowledge in how to best serve these individuals.

3.3. Strategies for improving coordination between state IDD and mental health agencies

Interviewees in all eleven states described strategies currently being employed or considered to improve coordination specifically for individuals with co-occurring IDD and mental health conditions (Box 4). Most of these strategies were related to administrative functions, policy, and funding. These included: (1) developing memorandums of understanding (MOUs) related to service delivery and coordination between the two agencies, (2) building a focus on the intersection of IDD and mental health into other inter-agency coordination efforts, (3) establishing specialty coordination centers and service delivery clinics funded by the state agencies, and specifically, (4) allocating funding for individuals with co-occurring conditions within existing funding streams.

Box 4.

Strategies for improving coordination between state intellectual and developmental disability and mental health agencies

Key themes and sub-themes with representative quotes
Administrative strategies for improving coordination	We [the IDD agency] have some really great projects that we’ve collaborated with [the mental health agency] to establish such as a specialized inpatient adult psychiatric unit intended to only serve people who are dually diagnosed. 08–06 I’m trying to push IDD training into the new 988 system, and I got a few contacts through all the mobile crisis teams, and they’re part of our advisory council, so we’ve got some formal things in place to where we have ongoing collaboration.10–04
Developing memorandums of understanding	If an [IDD] individual needed psychiatric hospitalization, there’s an agreement within our memorandum of agreement with [the IDD agency] that IDD staff can come into an inpatient psychiatric unit to provide the support. 01–02 They had defined co-occurring IDD and mental illness as a special population. So, we [the IDD agency] were doing memorandums of understanding with agencies that were providing services to people with co-occurring IDD and mental illness. 09–01
Building on other inter-agency coordination efforts	There’s a recent statute that’s passed to have us do more co-occurring work. The priority is substance use disorder and mental health, but IDD is not far behind -- and it’s named which was very important for us to be named. 04–03 Certified Community Behavioral Health Clinic have incentives to collaborate and are required to provide crisis response, like when we implemented 988, part of the planning was to make sure every team received training for dealing with folks with IDD. 09–06
Establishing specialty coordination centers and clinics	The coordinating center really was created to try to assist in bridging the gap between the mental health and IDD systems… it’s a lot of education and training. 02–01 They [the IDD agency] already have a program with the [state University] and they take and diagnose complex cases, so that there’s the overlap of systems right there. 09–03
Allocating funding specifically for individuals with co-occurring conditions	The [mental health agency], we have 11 million dollars set aside for individuals with multi system needs. So that could potentially include someone with a developmental disability if they meet criteria. 02–04 The legislature here invested a great deal of money this last session in the mental health system, and we [the IDD agency] have tried to kind of push into those discussions that led to some very specific things being called out. 04–02
Cultural strategies for improving coordination	There has been a very strong coordination element among all of the cabinet members. We got the governor’s cabinet to work together. Our director is very much interested in collaboration at our level and then at the community level. 02–04 When you look at people in mental health crisis, they need the same kinds of support that people with IDD need. They just need it differently, and I think if [the supports] could grow, the issue of whether someone’s dually diagnosed or not would fade. 04–02
Agency leadership committed to coordination	We’ve actually had leadership teams at most state agencies that want to work together, that want to collaborate, that are intentional about it, and so as far as the [mental health agency] and the [IDD agency], we have ongoing conversation. 05–03 [The mental health commissioner] has the respect of all the key stakeholders and everyone knows that she will not stop until every person is served and our gap is completely closed, and people are getting the services that they need. 10–01
Moving toward a focus on whole person care	Systems really should be universal, not “Well, if you’re between these ages and you have schizophrenia, we’ve got a program for you...” We should have an ethic that we’re going to help you as a community because it’s what communities should do for people. 04–05 [Agencies] should look at the person and say, “This is a person. Susie has intellectual disability. She has mental illness. She also has physical problems and we’re going to serve her as a whole…” and provide services holistically and do the wraparound. 06–04

Quotes from semi-structured qualitative interviews with state IDD and mental health state agency and advocacy or service delivery organization leaders (N=49) in the 11 states with separate IDD and mental health agencies (AZ, CT, FL, NM, NY, OH, OK, OR, SC, SD, and TN) conducted April 2022 to April 2023. Unique identifiers were randomly assigned and indicate the range of states and respondents included in the selection of representative quotes.

Interviewees also described strategies to improve coordination related to the culture of the agencies. Agency leadership invested in coordination was important both for buy-in and for facilitating more of the administrative strategies (e.g., advocating for funding). Interviewees also indicated that shifting and expanding the focus of agencies away from primary diagnosis-specific assessments and more towards a holistic approach to care is ultimately needed to best meet mental health needs of people with co-occurring IDD and mental health conditions.

4. Discussion

Interviewees in states with separate IDD and mental health agencies described relationships where agencies were placed in opposition to each other for funding and inter-agency coordination primarily occurred in response to crises. In the context of mental health services for individuals with co-occurring IDD and mental health conditions, barriers to coordination efforts included differences in focal populations, variation in agency organization within states, and a general lack of knowledge about how to support individuals with co-occurring IDD and mental health conditions. Interviewees across all states also described strategies for overcoming barriers to coordination and improving mental health services for this population, including administrative strategies such as designing a MOU between the two agencies or cultural strategies such as agency leadership dedicated to coordination activities.

In the current system, interviewees reported that inter-agency coordination exists primarily as crisis response, for example when an individual with co-occurring IDD and mental health conditions needs residential placement following an acute hospital stay. State strategies to support inter-agency coordination were focused on creating more formalized structures and processes (e.g., MOUs) and upstream points of integration (e.g., establishing specialty coordination centers and clinics) in order to support a shift away from responding to crises and better support people with co-occurring IDD and mental health conditions before they reach a point of emergency.

While not discussed explicitly by interviewees as a strategy for supporting inter-agency coordination efforts, flexible funding streams and financial incentives are important aspects of many of the strategies that were discussed. One example of how flexible funding streams can be used to support a culture of whole person care is the California Department of Health Care Services’ Whole Person Care pilot program.²¹ Participating partnerships of local or regional government and community partners work together to coordinate mental and physical health care and social services in a patient-centered manner for high-cost high-need Medicaid beneficiaries.²¹ These programs are funded through a state Medicaid waiver and funds support infrastructure for integrating services (e.g., population health management software), services not otherwise covered by Medicaid (e.g., housing support), and other coordination activities (e.g., case management).²¹ While many of the pilots focus on individuals experiencing homelessness, a similar program could be adapted for individuals with IDD.

This analysis focused on states were IDD and mental health agencies housed in completely separate organizations within the government. In other states, IDD and mental health services are different departments within the same agency or may be one singular agency.⁴ Historically, in states where these agencies were housed together, there have been pushes from advocates in IDD sectors to split the agencies based on the belief that individuals with IDD would be better served in their own agency.⁴ More recently, states like Texas in 2014 and New Mexico in 2023 passed legislation merging these departments back together as part of larger health agency reorganizations in an attempt to streamline and improve services.^22,23 Bringing these two agencies under the same umbrella organization without also addressing financial conflicts will likely leave in place significant barriers to coordination.

Study findings on barriers to and strategies for inter-agency coordination related to mental health services for individuals with co-occurring IDD and mental health conditions are consistent with prior literature focused the service delivery level for this population and for disabled people in general.^{2,3,8,24–26} For example, like people working in state agencies, few providers have experience or training in working with individuals with IDD or disability and, consequently, struggle to support these individuals as patients.^8,24,5 Ultimately, barriers need to be addressed and strategies need to be implemented at both levels to fully meet the mental health service needs of individuals with co-occurring IDD and mental health conditions.

Results should be viewed in light of limitations. Interviews were conducted with individuals in states with completely separate agencies. Therefore, barriers or strategies to coordination may differ in state where the agencies have more structural connections (e.g., the same commissioner). There may be response bias related to interviewees wanting to portray their state in a positive light, especially from those employed by the government agencies being discussed. There were also more interviewees from IDD sectors than from mental health sectors, potentially making these findings more reflective of those working on coordination from the IDD sector. However, descriptions of barriers and strategies were fairly consistent across interviewee organization affiliation and service sector. Finally, our sampling strategy aimed to identify individuals in IDD and mental health agencies with the most relevant knowledge of mental health services for individuals with IDD. Themes raised by agency leadership may differ from themes that would have arisen from other stakeholder groups (e.g., providers, individuals with IDD and mental health conditions using services).

5. Conclusion

Much of the inter-agency coordination in states with separate mental health and IDD agencies currently exists in the context of crisis response. Agencies face significant barriers to coordination in the context of mental health services for people with both IDD and mental health conditions including distinct focal populations, within-state variation in agency structures, and a lack of knowledge about how to support individuals in this population. Interviewees also described both administrative and cultural strategies for overcoming these barriers including building on other inter-agency coordination efforts and moving toward a focus on whole person care, that should be prioritized to better meet mental health needs for this population.

Highlights:

• Lack of coordination between state intellectual and developmental disability (IDD) and mental health agencies is a barrier to accessing mental health services for those with both IDD and a mental health condition.

• Currently, state IDD and mental health agencies primarily coordinate with each other in response to crises.

• Barriers to coordination across agencies include distinct focal populations, within-state variation in agency structures, and a lack of knowledge about co-occurring IDD and mental health conditions.

• Administrative (e.g., memorandums of understanding) and cultural (e.g., focusing on whole person care) strategies should be employed to better support coordination related to mental health services for people with both IDD and mental health conditions.