Michael Mayer, Ph.D. Executive Director, The Institute, Research Triangle Park, NC
One of the difficulties in writing about crisis services for the population identified as having both an intellectual disability (ID) and mental illness (MI), is that there is so much that could be said that is important to the creation of an effective and efficient system of supports and services. In reviewing the literature while preparing for this article I tried to discern what would be of most value to the readers. Rather than offer a description of a specific program design, instead this article is meant to provide an examination of practical considerations that seem to affect all crisis services, especially in the early stages of design and implementation.
There are numerous issues that affect the development and delivery of comprehensive crisis services for people who have ID/MI. The literature and experience both establish that the ability of any one individual or organization to manage significant crises alone is severely limited (Baker 2001; Moseley 2004). Thus, one of the first things that is often recommended by those who have developed crisis services is to establish an inter-agency working group that is committed to improving the status quo (Gilmore & Gravelle 1998).
It is critical to note that in many of the situations where I have worked, and a significant percentage of the literature seems to support this, the system's focus appears to be more on the cause of (blame for) the problem than on the antidote to the problem. This tends to create more tension and resistance to the collaboration across the community and with specialized service providers that is necessary for the development of an effective mechanism to support people who have ID/MI. This tends to create hostility and anxiety, which both tend to be "contagious" to social service and clinical service providers equally.
It is unfortunate, but nonetheless true, that often both the system and the individual are "in crisis" at the same time. Due to the dynamic complexity of this reality, in this article we are unable to address all of the challenges presented sufficient detail that would result in significant changes in the outcomes currently experienced. However, we will attempt to meet the challenge to concisely identify some of the key elements that are necessary to begin the process of designing a comprehensive community crisis response system.
We know for example, of the concerns related to the training issues for employees, both within our organizations and those of organizations that we must collaborate with. Liability issues, confusing terminology and industry jargon, issues associated with philosophical perspectives such as "locus of control" and the perceived responsibilities of the various actors within the community all come into play (impact). Similarly, issues associated with the interpretation and application of rule and laws, such as HIPAA and EMTALA, can easily complicate an already fragmented system of care that is all too often struggling under insufficient funding to meet current needs without the additional demands placed upon it by crises. With all of the above making it difficult at best to manage through a crisis situation, we then also have the often complex clinical and social issues of each individual with ID/MI that must be addressed. To put it another way, service provision for this population tends to be "messy." The issues both at a systems level and for specific individuals are rarely resolved quickly, the services tend to cost more, and they often require more (sustained) effort.
Following is a brief summary of areas of traditional conflict between mental health and developmental disabilities service systems relative to serving people who have ID and MI that systems should consider addressing at the outset of discussions. These issues include:
"Mission and philosophical orientation conflict, often with defined population exclusions, differing outcome expectations, operational values, and associated priorities
"Establishing a common lexicon of services--for example some words used by both systems have different meanings, such as "Case Manager."
"The nature of the services (habilitation vs. therapy, psycho-social vs. psycho-medical) which not only affects the duration, scope, and intensity but also issues related to the breadth of the service
"Cross system allegations of abdication of responsibility manifest in such statements as "Over-protected and over-served" vs. "Abandoned and under-served," "You're dumping" or "You're cherry-picking," etc.
"Issues associated with the nature of the disabling conditions, such as slow progress vs. chronic cycling, inability to generalize information across settings, etc.
"Concerns about what is "Best Practice" for this population and how can we pay for it?
When these issues are extrapolated across multiple service providers and funding streams with a wide variety of roles within the community - but who are equally necessary for the system to succeed, such as law enforcement and community hospitals, the effort required to avoid system destructive conflict becomes exponential.
Where to begin?
Even the word "crisis" has multiple interpretations and thus must be defined. For our purposes a crisis is defined as: "An urgent situation that must be addressed now due to a behavior or set of behaviors that they are demonstrating an inability to manage on their own that is likely to directly and immediately result in the harm to themselves, someone else, or something that will result in serious negative consequences for the individual."
In using this definition, there is a clear recognition that there is a difference between a crisis due to atypical or previously unknown behavior and one that results from a known extreme behavior pattern that has the same set of potential outcomes. This highlights the need for the development of comprehensive crisis management plans. These plans must address both the known behaviors and what to do when the behavior is previously unknown. This will be discussed in more detail below.
Now that we have a working definition of a crisis, there are several initial questions that must be asked. Among these are:
1)Why do crises occur?
2)What critical elements of effective crisis prevention and intervention system is currently in place?
3)What are the degrees of crisis and when do the various components of the system engage to address the problem? (i.e., the local Emergency Department should not be considered a "first option")
4)Is the system prepared for crises? Why or why not?
5)What do we know that doesn't work and have we been doing any of these things that we should stop doing?
6)How flexible is the crisis response system?
7)Do we have any local evidence to be hopeful about?
8)What do we need to know that we don't yet know?
9)Who needs to be working in the crisis service mix that isn't? (Meaning: Who needs to be a part of these discussions?)
10)What are the requirements for an initial plan of action? What will be our criteria for success?
The above questions presume a relatively functional group dynamic that is invested in creating change for the benefit of the person with ID/MI and their respective organizations. Some of the identified characteristics of self-correcting systems which, if they are in place, make this process substantially easier are summarized as:
1.A climate of high social support, respect, trust, and mutual concern among the participants;
2.Open communication with relevant data being made available at all levels so that decisions are data based;
3.A climate that encourages creative problem-solving with no fear;
4.A commitment to inter-dependence and team effort by all to actively work toward resolution of the issues and support and complement of the decisions that have been made, and;
5.An agreement that the achievement of individual, organizational, and collaborative goals will occur in adequate balance (Mayer & Dihoff, 1996).
Once we have established the proper environment for progress, we must gather the critical information from the environment to be able to make the decisions:
"It is from this information that decisions are made. This
information includes: available resources; stakeholder wants,
needs, values, history, attitudes, etc.; risk/safety perceptions;
success criteria, and; systemic expectations, limitations,
collaborative abilities, etc.. This information enables all involved to engage in several different forms of activity, including: predictions of outcomes,
systemic reactions, etc.; development of success criteria,
service design, preparations for implementation, and;
expressions of expectations&ldots;" (Mayer & McNelis, 1995)
Once you know what you want, it is much easier to work toward getting it. For example, you can develop a statement such as the one that follows to begin your process of building your system.
Mobile Crisis Management
"Mobile Crisis Management involves all support, services and treatments
necessary to provide integrated crisis response, crisis stabilization
interventions, and crisis prevention activities. Mobile Crisis Management
services are available at all times, 24/7/365. Crisis response provides an
immediate evaluation, triage, and access to acute mental health, developmental disabilities, and/or substance abuse services, treatment, and supports to effect
symptom reduction, harm reduction, and/or to safely transition persons in acute
crises to appropriate crisis stabilization and detoxification supports/services.
These services include immediate telephonic response to assess the crisis and determine the risk, mental status, medical stability, and appropriate response.
Mobile Crisis Management also includes crisis prevention and supports that are
designed to reduce the incidence of recurring crises. These supports and
services should be specified in a recipient's Crisis Plan, which is a component
of all Person Centered Plans.
Mobile Crisis Management services should be delivered in the least restrictive environment and provided in or as close as possible to a person's home. Mobile Crisis Management services must be capable of addressing all psychiatric, substance abuse, and developmental disability crises for all ages to help restore (at a minimum) an individual to his/her previous level of functioning.
(NC DHHS, Division of Medical Assistance, Clinical Policy: Area Mental Health, Developmental Disabilities, and Substance Abuse Services - Service Definitions
and Standards, pp. 12, 13)
What are reasonable goals?
One of North Carolina's current overall goals related to crisis services states:
"Crisis services shall be designed for prevention, intervention, and resolution,
not merely for triage and transfer and shall be provided at the least restrictive
setting possible, consistent with the individual and family need and community
safety." (NC DHHS, Division of MH/DD/SAS Services, Policy Guidance:
Development of Community Based Crisis Stabilization Services)
In order to achieve the above, from a systems perspective, there are three levels of service coordination appropriate for treatment of people with co-occurring ID/MI disorders. The level of service coordination used for an individual with co-occurring disorders should match the level of need for service coordination. On an individual basis it should be based on the severity of the behavior patterns or the unpredictability of the behavior by the individual who has ID and MI. This will be discussed in more detail in the final section of this article.
The first level is informal consultation, which is fairly self descriptive. The second level is formal collaboration where there is a distinct effort by the involved parties to assure that their supports, services and interventions do not conflict with the others who are involved, and whenever possible are complimentary to them. This level engages all necessary agencies and organizations and can resemble a traditional person centered plan for "the system" as the client. (Mayer, 1991)
The third and highest level includes integration of services. This level is the level of cooperation that is often required to establish a system of crisis care for people who have ID/MI, due to the potential for multiple crises and/or unpredictable behavior.
The scope of services that can be organized into a system of crisis care can be defined in many ways. The list below serves as one example of the range of services, generally arranged from least to most intrusive/restrictive (Mayer, 2005):
Routine and Preventive Supports
"Person Centered Planning, including a crisis plan
"Natural supports such as family and friends
"Financial and other generic supports meeting basic needs
""Warm Lines" (phone calls to therapists before a crisis)
"Peer support - individual or group, paid or volunteer (not the same as "friends")
In home respite
Out of home respite (short term)
In home counseling/supervision
In home skills training/supervision
ACT, Multi-Systemic Therapy Teams, etc.
Crisis Response Services and Supports
"24 hr. "Hot Lines"
"Peer crisis supports
"In home mobile crisis response team
"Safe-houses, specialized/crisis respite, specialized foster care
"Urgent care clinics
"Crisis stabilization "units" (such as 23 hr. observation chairs)
"Law enforcement and EMS
"General hospital (Specialized triage or Emergency Department)
"General hospital (medical, detoxification, or psychiatric unit admission)
It is important to note medical intervention is the highest intensity of intervention and their engagement should be limited to those times when it is absolutely necessary. Unfortunately, it often becomes the place where the result of problem denial and liability concerns on the part of the rest of the system must be addressed. Medical interventions can not provide the long-term resolution that is necessary to prevent and intervene early in crises, but medical providers should be included in planning and system intervention development efforts. Medical providers should find this to their advantage as well.
It is important to understand that the future of any effort to develop and manage services for those identified as having ID/MI will be dependent upon the "buy-in" of those who need to provide those services and those who fund those services. There are many factors that will promote this acceptance. Among them are:
1)Evidence that the change is really in the best interest of the individual and system at large, as opposed to a philosophy that will shift shortly after they make the effort to change;
2)Evidence that the outcomes are attainable within the funding and regulatory environment;
3)Evidence that service definitions and expectations are realistic to meet the needs and desires of the consumers;
4)Evidence that the authority is commensurate with the responsibility and accountability;
5)Evidence of active participation in the decision making process associated with the changes;
6)Evidence that changes will be implemented in a planned and coherent transition;
7)Evidence that the necessary support for change is present from the state and local system;
8)Evidence that the funding for the change is realistic.
From a systems perspective, it is important to figure out how to use effectively the resources you have access to so that available resources on one hand are not overtaxed and on the other hand are not unnecessarily replicated. Some examples of resource maximization as reported by Psychiatric News include:
"Physicians receive specialized DD training (Veenestra-Vanerweele, 2004)
"On-site psychiatric consults for the Emergency Department (2004)
"Hospital advocates that specialize in psychiatric emergencies (2001)
"Specialized training for police and other law enforcement officers (Bender, 2005)
In closing this section the following is offered as some areas to consider in the development of crisis services at the systems level.
"Create plans to maximize available resources, including interaction guidelines for personnel across agencies and protocols for service access for all agents with multiple levels of contingency planning
"Establish multi-party written Memoranda of Agreement (MOA) that addresses collaborative service development and support and includes resource sharing (includes, but is not limited to, expenses and revenues)
"Coordinate cross training, consulting, and similar efforts with primary service providers, local law enforcement, criminal justice services, and hospitals.
Prevention and early intervention
The best collaborative and integrated system of crisis services will still be over-utilized if at the individual level the primary care providers are unable to prevent at the earliest levels possible many crises through appropriate therapeutic supports and early intervention when the crises begin escalating.
Many crises can be, and have been, prevented with appropriate planning and execution of person-centered plans that address the needs of the whole person. However, it was not until fairly recently that we began to see the inclusion of crisis plans as a legitimate component of the person-centered planning process. Further, it is still common to see crisis plans that do not address prevention or early intervention, with these elements often being reserved for "behavior plans." Due to the frequency that unpredictable behavior and extreme behaviors can occur with this population, it seems prudent that that everyone who has an ID/MI diagnosis should have a crisis plan as a part of their person-centered plan. However, this plan will remain as ineffective as no plan at all unless all direct contact and supervisory staff are very familiar with each one.
As mentioned earlier, the crisis plan should address known behavior patterns as well as atypical events. Obviously, for these to be of any real value they must be developed by people who know and understand both the person and environments that they will most likely be functioning within. Further, whenever possible, the staff that responds first should be one who can most easily gain and/or establish trust with the individual.
The adage that "an ounce of prevention is better than a pound of cure" is one we should heed. Examples of items that have been shown to help prevent crises include active listening, good friendships, and membership in a strong faith community. Ryan and Sunada also found that in excess of 70% of people who have significant crises have undiagnosed or under-treated dental or medical needs (1997).
One effort to address prevention efforts is The Institute Assessment of Essential Motivation, Tension, and Resistance, a tool developed by the author and Dr. Susan Havercamp (Havercamp & Mayer, 2001). The tool is based on the 15 core motivators for people identified through the work by Reiss and Havercamp (1998). The goal of the tool is to help identify and mitigate points of tension and resistance, both of which cause stress and the potential for decompensation (Mayer, 1996). Tension is identified as the individual with ID attempting to meet the demands of one of the areas of primary motivation for him or herself and the system of care not providing sufficient support to enable that need to be met. Resistance is descriptive of the pattern of behavior demonstrated by the individual with ID to efforts by the system of care to attain compliance with systemic values and needs. Points of major tension and resistance are identified and then alternative means for achieving mutual goals are identified as a mechanism to remove stress from the situation with the expectation that decreased stress will lead to more rational behavior on the parts of all involved.
Plans should also identify what we know does not work for the individual. For example we know that for many the use of behavioral "SWAT Teams" can make the situation much worse, rather than better, and that a calm approach by a trusted staff person can result in a dramatic de-escalation.
The plan must address stages of response intensity and involvement based upon clear behavioral indicators that represent escalation of the crisis. Further the plan should be readily available to all staff, law enforcement, medical professionals (EMS, Emergency Department, etc.), and the like in the event that the crisis can not be prevented or managed by the first responders (staff present) within the primary environments and thus requires additional assistance or an emergency relocation to manage.
Early intervention is the first stage of response intensity and is described as the effort that is demonstrated once the first warning signs are demonstrated . One technique that has been used to provide early intervention support is to have the individual's name on the top of a plan summary that staff have quick access to, and a list of five "social talk" points. This gives the early intervener five areas that the individual has shown interest in that will allow the staff to distract the individual from the cause of the emotional upset. (Mayer, 2005)
For example, confusion is common in the pre-crisis and early crisis stages and staff can often provide support by calmly assisting with re-orientation by carefully listening to the nature of the upset and providing simple choices for the person to select from that will allow them to reassert control over their behavior. (Mayer, 1997)
One final recommendation is to include "warning signs," referenced above, directly within the plan. Some relatively common examples to consider are:
"Substance abuse - the substance can be something as simple as water
"Biological indicators such as changes in eating, sleeping, weight, elimination behavior, sexuality demonstrations, injury, illness (including hypochondriasis and somatization), amount of movement
"Changes in routines
"Changes in emotional responses, lability, increased signs of stress and/or anxiety
"Change in self-governance, perseveration, impulsivity, or compliance; Safety and self-preservation changes
"Changes in expressive and/or receptive communication
"Aggression toward self or others
In closing I offer this summary of issues to consider for changes to affect the individuals within the primary support organization:
"Person Centered Planning should be comprehensive plans with Crisis Prevention and Intervention Plans that contain responses that are scaled to intensity, include interaction guidelines for staff to use with the individual and provide for multiple levels of contingency planning, manage tension and resistance, and enable post-crisis recovery and community re-engagement
"Provide for active, community-based "supportive therapy" and cross system implementation, such as Dialectical Behavior Therapy, anger management, and other psycho-educational skills development. These efforts should support and enable community membership and be outcomes based (data) dynamic services with on-going analysis and appropriate alternations as warranted (Mayer, 1994).
"Assure that there is an active clinical team approach that includes direct contact personnel. The importance of careful staff selection and extensive staff training can not be overstated.
"Provide for a variable staff to consumer ratio that is person specific with services provided in a "typical" home environment whenever possible.
Baker, D. (2001). Training and technical assistance strategies for behavior support and crisis response. Institute on Community Integration, Univ. of Minnesota, 14, 1.
Bender, E., (2005). Police trained to intervene in mental health crises. Psychiatric News, 40, 18.
Gilmour, I., & Gravelle, G. (1997). A model of community and clinical support for persons with a dual diagnosis and their families. NADD Bulletin, 1, 2.
Havercamp, S. M. & Mayer, M. A. (2001). The keys to happiness: Assessing motivation, tension, & resistance. Proceedings of NADD 18th Annual Conference, Emerging Practices in Dual Diagnosis. Kingston, NY: NADD Press..
Mayer, M. A. (1991). Systematic development of joint service/support plans: Making community alternatives and generic supports work. Proceedings: Maximizing the individual through state of the art in mental health and mental retardation. Kingston, NY: NADD Press.
Mayer, M. A. (1994). Stop the insanity!: Community diversion models that really work. Proceedings. Kingston, NY: NADD Press.
Mayer, M. A. & McNelis, T. (1995). Program design, implementation, and evaluation. Proceedings, International Congress II. Kingston, NY: NADD Press.
Mayer, M. A. (1996). Using the Psychosocial and Environmental Problems MR/DD Assessment. Proceedings, Through the Lifespan. Kingston, NY: NADD Press.
Mayer, M. A. & Dihoff, D. (1996). Pretzel logic: Effective utilization of outcomes assessments in dual diagnosis services. Proceedings: Through the Lifespan. Kingston, NY: NADD Press.
Mayer, M. A. (1997). Providing community services to individuals who are dually diagnosed: Practical considerations. Proceedings, International Congress III. Kingston, NY: NADD Press.
Mayer, M. A. (2005). The crisis services crisis (audio tape). New Brunswick, NJ: Boggs Center, Robert Wood Johnson Medical School.
Moseley, C. (2004). Getting a life: Findings and recommendations from the NASDDDS Invitational Symposium-State strategies for supporting individuals with co-existing conditions. Washington, DC: NASDDDS.
Psychiatric News. (2001). Advocate improves hospital experience. Psychiatric News, 36, 17.
Psychiatric News. (2003). Rule change on emergency care could reduce specialty coverage. Psychiatric Services, 38, 10.
Reiss, S. & Havercamp, S. H. (1998). Toward a comprehensive assessment of fundamental motivation factor structure of the Reiss Profiles. Psychological Assessment, 10, 97-106.
Ryan, R. & Sunada, K. (1997). Medical evaluations of persons with intellectual disabilities referred for psychiatric evaluation. General Hospital Psychiatry, 19, 274-280.
Veenestra-Venderweele, J. (2004). Developmental disabilities: Close the training gap. Psychiatric News, 39, 4.
Other Suggested Reading
Beasley, J. (2003). The START/Sovner Center program in Massachusetts. NADD Bulletin, 6, 3.
Fleisher, M. H. (2003). Psychiatric medicine and the care of non-acute hospitalized patients with mental retardation and mental illness or severe behavior disorders. Mental Health Aspects of Developmental Disabilities, 6, 59-67.
Feldman, M., Owen, F., Griffiths, D., Taruli, D., Sales, C., Tardif, C. et al. (2005). Facilitating health care and mental health access of persons with intellectual disabilities: One element of systemic change. NADD Bulletin, 8, 4.
Hanson, R. H. & Weiseler, N. A. (2001). Meeting the challenge: Crisis services in the community. Institute on Community Integration, Univ. of Minnesota, 14, 1.
Kim. S. H. & Cooker, G. (2001). Accessibility and appropriateness of community-based mental health services to persons with developmental disabilities. Mental Health Aspects of Developmental Disabilities, 4, 108-118.
Lankin, C. K. (2001). Community for all: Experiences in behavior support and crisis response. Institute on Community Integration, Univ. Of Minnesota, 14, 1.
Levitas, A. S. & Gilson, S. F. (2001). Predictable crises in the lives of people with mental retardation. Mental Health Aspects of Developmental Disabilities, 4, 89-100.
McCue, M., Gatling, J., & Nunn, D. (1997). Strengthening local capacity to deal with challenging behaviors through crisis response. NADD Bulletin, 1, 6.
Mayer, M. A. (1998). Stealth mental health: Secrets of effective community based therapy. Proceedings. Kingston, NY: NADD Press.
Mayer, M. A. & Poindexter, A. R. (2000). Assessment and management of anxiety and stress in persons who have developmental disabilities. In A. R. Poindexter (ed.), The assessment and treatment of anxiety disorders in persons with mental retardation. Kingston, NY: NADD Press.
Moseley, C. (2004). NASDDS technical report: Survey on state strategies for supporting individuals with co-existing conditions. Washington, DC: NASDDDS.
Oslund, J., Larson, W., & Lankin, C. (2001). Human and cost benefits of community behavioral support. Institute on Community Integration, Univ. of Minnesota, 14, 1.
Psychiatric News. (2003). Confidentiality in emergencies. Psychiatric News, 38, 42.
Psychiatric News. (2004). More emergency care targets kids in crisis. Psychiatric News, 39, 13.
Schwartz, S. A., Ruedrich, S. L., & Dunn, J. E. (2005). Psychiatry in mental retardation and developmental disabilities: A training program for psychiatry residents. Mental Health Aspects of Developmental Disabilities, 8, 13-21.
Silka, V. R., & Hurley, A. D. (2003). Differentiating psychiatric and medical problems in patients with developmental disabilities. Mental Health Aspects of Developmental Disabilities, 6, 120-124.
Smull, M. W. (2001). A crisis is not an excuse. Institute on Community Integration, Univ. of Minnesota, 14, 1.
Weiseler, N. A. & Hanson, R. H. (2001). Building an effective strategy for crisis prevention. Institute on Community Integration, Univ. of Minnesota, 14, 1.
IMPACT: Feature Issue on Behavior Support for Crisis Prevention and Response
Securing a Stable Funding Base, McKinney-Cull, S., www.archrespite.org
Family-centered Practices, Cook-Pletcher, L. , www.archrespite.org
Evaluating and Reporting Outcomes: A Guide for Respite and Crisis Care Program Managers - Revised Edition, Kirk, R. and Wade, C., www.archrespite.org
Planned and Crisis Respite for Families with Children: Results of a Collaborative Study, Dougherty, S., Yu, E., et al., www.archrespite.org
Surgeon General's Report on Mental Health www.mentalhealth.samhsa.gov/features/surgeongeneralreport/chapter3
Emergency Psychiatric Resources Online, Michael H. Allen, MD, 2004 www.psych.org/downloads/EmergencyServicesFinal.pdf
For further information: firstname.lastname@example.org.