NADD Bulletin Volume VIII Number 5 Article 2

Complete listing

In Memory of John Jacobson, Ph.D.: Crisis Links: A Comprehensive Service Network to Address Emergent Behavioral Crises Experienced by Individuals with Dual Diagnoses and Their Caregivers

Al Pfadt, PhD, Director of Clinical Services

Ray DeNatale, MA, Executive Director, Independence Residences, Inc.

We chose this topic for our article in tribute to John Jacobson because it reflects two areas of his passion and expertise - clinical services and public policy. John realized that both go hand in hand. Without adequate public policy support, even the most well designed clinical services cannot be delivered as intended and will therefore achieve sub-optimal outcomes. Likewise, even the most earnest public policy endorsements will not help poorly conceived clinical programs accomplish their intended objectives. We will describe the process we followed in developing broad-based support from within both the developmental disabilities and mental health services networks, as well as the components of a crisis services model we have developed. This will illustrate how clinical service needs and public policy issues must both be addressed in order to overcome systemic barriers that limit the opportunities for people with the dual diagnoses of developmental disabilities and psychiatric impairments to have the supports they require to live productive lives in the community.

What is an Emergent Behavioral Crisis?

A recently published workbook for crisis intervention (Meyer & James, 2005) define a mental health crisis in terms of the mutual overlap among three domains: crisis, emergency and trauma, as described below.

CRISIS: The dictionary definition of a crisis is: "a stage in a sequence of events at which the trend of all future events, especially for better or worse, is determined; a turning point."(Random House, 1973). According to Myer and James, (2005) the defining characteristic of people in a psychological crisis is that they feel overwhelmed by current events or life circumstances, causing them to experience a sense of disequilibrium and loss of control over their lives. In applying these features of a crisis to the lives of people with developmental disabilities and psychiatric impairments, it is clear that the experiences of caregivers, as well as the focus person (referred to as the consumer in the current argot of the developmental disabilities community), must be taken into consideration. It may be comforting for crisis professionals to reassure caregivers by telling them that the Chinese symbol for "crisis" is a combination of two other symbols - one for "danger" and one for "opportunity" (Echterling, Presbury, & McKee, 2005). However, people who are in the midst of a crisis acutely experience the danger and rarely have the luxury of being able to emotionally distance themselves enough from their problems to see the opportunities for growth which are also present. Other experts on crisis intervention (James & Gillilad, 2001) classify crises into one of four categories, recognizing that complex human events cannot be conveniently pigeon holed and that a particular crisis may have features of more than one category. Developmental crises occur when the normal course of growth or development in disrupted by events which cause a dramatic departure from the expected trajectory: Existential crises are associated with conflicts accompanying fundamental human dilemmas; for example, whether to fight in a war one perceives as unjust or renounce one's citizenship and flee to another country. Systemic crises occur when a natural disaster produces a ripple effect that disrupts the lives of people in a particular environment. We will primarily be conceived with Situational crises, which occur when events suddenly take place which were not anticipated and which cannot be controlled because of their severity and unpredictability. These situational crises present significant health and safety risks for the focus person and his/her caregivers. In the case of individuals with developmental disabilities, these situational crises are typically expressed through overt behavioral patterns (aggression, self-injury, or property destruction) which become the presenting problem for crisis intervention specialists. In our model, therefore, we refer to crises as behavioral events.

EMERGENCY: The second domain represented in Figure 1 reflects the sense of urgency created by the imminent risk of permanent harm (physical or psychological) associated with the crisis event or situation. It is this state of emergency and the resulting need to take immediate action to protect the health and safety of all parties that distinguishes a "crisis" from a "vexing problem."

TRAUMA: People are traumatized when episodic events occur over extended periods of time, leading to a sense of helplessness about their ability to control situations which are potentially dangerous or when the perceived threat of the reoccurrence of a past event becomes so great that "it becomes deeply rooted in peoples lives to such an extent that it remains a contemporary experience, not being something accepted as belonging in the past" (p. 4)!

We have coined the term "emergent behavioral crisis" to characterize an event or situation, which has elements of a situational crisis/behavioral event, emergency, and trauma as presented in Figure l. This combination of element necessities that there are be a comprehensive, coordinated, and timely response on the part of a service system to the focus person in crisis and his/her caregivers so that immediate supports and services are provided to protect the health and safety of all parties and to help restore the situation to a state of equilibrium.

 

An emergent behavioral crisis is a situation that presents an imminent risk of causing harm or to the consumer on his/her caregivers through the sudden occurrence of aggression, self-injury, or property destruction. These behavioral events must be intense enough that they overwhelm the resources of the family. These behavioral events can be a result of an on-going situation or due to an immediate major change in the person's environment. In order to qualify for the type of crisis services we are proposing the on-going situation must involve behavioral events of a sufficient magnitude that they have the potential or causing trauma and require an emergency response, as reflected by the overlap of A, B and C in Figure 1.

The term "crisis services" as currently used in the developmental disabilities field has been described by Hanson and Wieseler (2002) as a misnomer for behavioral consultation and treatment recommendations or proactive intervention strategies. This is because the professional staff (behavior analyst, nurse, psychiatrist, and psychologist) and others assigned to the crisis response team rarely are available to travel immediately to the client's care setting to intervene in what we described above as an "emergent behavioral crisis." This consultative model has some advantages and avoids placing staff in the midst of what Hanson and Wieseler describe as a "chaotic and potentially life-threatening situation similar to those experienced in the mental health field" (p.43). However, it does so at the expense of ignoring the sense of urgency and potential for trauma that are essential ingredients of a "true crisis." This means that other agencies by default are left to respond to "emergent behavioral crises."

For example, officers from the New York City Police Department have been instructed to follow an established protocol when they are dispatched in response to a 911 call to handle an "emotionally disturbed person," whether or not that person has a developmental disability. One step in this protocol is to bring the person to a psychiatric emergency room. During our due diligence process, it was noted by a representative of NYPD that officers are strongly encouraged to follow the established protocol to this end. In some cases, psychiatric hospitalization may be the most appropriate and cost effective response to an emergent behavioral crisis, particularly one precipitated by a sudden re-emergence of symptoms associated with a psychiatric disorder that has not been adequately treated or stabilized. However the overuse of psychiatric emergency rooms is at best palliative and is more likely to add additional trauma to a situation which already has disrupted the families' normal relationships. Utilizing this route, with its added stress and uncertainly as to whether or not the focus person will be admitted, required to stay in the ER but not be admitted, or asked to be returned home, may lead the family to the decision to seek long-term residential placement out of the home to prevent future recurrence of the same process. This inappropriate use of psychiatric emergency room services adds to tensions that already exist between the developmental disabilities and mental health service systems.

 

Further, many of the crises could be stabilized [worked through] within the person's natural environment if sufficient resources were available. By resolving crises within the natural environment, trauma associated with the transport and treatment of the individual by new faces in new settings is avoided. Moreover, the resolution of the crisis in the natural setting utilizes all the natural cues and the comfort of a familiar setting. A Mobile Crisis Intervention Team (such as the one described below) can help accomplish these objectives.

 

Challenges to Responding to Behavioral Crises in the Community:

 

There has been trend toward deinstitutionalization and a mandate for community living for all individuals with developmental disabilities irrespective of their service needs. This has resulted in opportunities for people with long histories of severe and persistent behavioral disorders and psychiatric impairments to live without the restrictions imposed by aggregated care provided in intuitional settings (state operated residential facilities, psychiatric in-patient units.) Unfortunately, the level of support required to help individuals with the most severe challenging behaviors function adequately in these integrated community settings has often not matched their service needs. Furthermore, the services which currently are available are often fragmented and are based on the availability of program "slots" which restrict access to services for individuals who do not meet certain eligibility criteria. Particularly for individuals with dual diagnoses, access to the full range of services require to adequately address emergent behavioral crises is still limited due to the often unbridgeable gap existing between mental health and developmental disability service system at the state and local community levels. An illustration of this fragmentation is presented in Figure 2, which depicted crisis services currently available in Queens at the time we developed our Crisis Links Proposal, described below.

In response to the perceived need for more intense crisis services, perhaps influenced by other factors identified by Hanson and Wieseler (litigation, advocacy by special interested groups resulting in legislative mandates, trade union agreement and creative funding opportunities made available at the local, state and federal government levels), some local communities have developed demonstration projects to create a full range of services for individuals and caregivers experiencing an emergent behavioral crisis. Several of these models for services delivery were described in a review article (Pfadt, 1997), while a more systematic strategy for providing crisis services for individuals with a dual diagnosis was presented by Beasley and DuPree (2003). Their article also listed a comprehensive array of "services effectiveness trends" identified by evaluations they conducted to identify obstacles to service delivery and to determine which remedies were necessary to correct perceived deficiencies. Table 1 summarizes the results of this impressive national survey of 35 agencies and identifies a formidable list of challenges to effective service delivery. Noticeably absent from this list of emerging service trends is the creation of mobile crisis intervention teams capable of responding to emergent behavioral crises in a timely manner. This is probably because most agencies within the developmental disabilities lack the expertise to respond to the "chaotic and potentially life-threatening situation similar to those experienced in the mental health field," as cited previously.

 

Our Proposed Solution: Description of Crisis Links:

 

The Crisis Links model we have developed consists of three components:

 

1.A Mobile Crisis Intervention Team (MCIT) includes a cadre of mobile crisis intervention specialists who have received intensive, specialized training to work directly with consumers and caregivers providing services to individuals experiencing an emergent behavioral crises. These specialists work together with a care team of professionals staff (a psychiatrists, psychologist, and a clinical social worker) who are experienced in managing emergent behavioral crises.

2.A Crisis Residence will provide 24-hour, 7 day per week intensive milieu therapy for six (6) consumers whose crisis are severe enough to require temporary relocation to another residence but does not necessitate immediate placement in a psychiatric in-patient unit or another secure facility. Beds in the Crisis Residence will be available for acute admissions lasting up to nine months.

3.Our model also includes a Transitional Living Center, which functions as a "step-down residence" for up to 4 individuals who no longer need the services of our Crisis Residence and are awaiting residential placement because their service needs exceed the resources currently available to them. The transitional Living Center also provides temporary housing for other individuals who require immediate residential placement because of emergency situations not necessarily related to their challenging behaviors. The expected length of stay in the in the Transitional Living Center is 12 - 18 months.

 

Figure 3 represents the types of linkages to be established by our proposed Crisis Links network

Public Policy Issues:

We met with various stakeholders including parents, representatives of human services agencies and government to determine the need for the services mentioned above. These included the State Office of Developmental Disabilities and representatives from the New York City Department of Mental Health and Developmental Disabilities as well as the New York State Development Disabilities Planning Council. Also administrators from local hospitals currently operating psychiatric in-patient units, the New York Police Department, representatives from currently operating crisis supports funded by New York Office of Developmental Disabilities, representatives from the Long Island Crisis Intervention Team and others provided input. Most importantly parents who utilized crisis supports had significant input in the development of our proposal.

 

We sent a draft of our CRISIS LINKS Proposal to this group to familiarize them with our plans to create a comprehensive crisis services network in Queens. After some feedback, a meeting was scheduled at our offices to bring these stakeholders together to more fully discuss the currently available services in Queens, identify the areas for improvement and make recommendations.

 

A successful meeting took place where the majority of all stakeholders were present. Lively discussion took place over the following points: how we would address that Queens has varied communities with diverse cultural backgrounds; the uncertainty of eligibility for New York Department of Disabilities services by those who are in crisis; how adequately the Borough responds to emergent crises; and the disposition of people with developmental disabilities who arrive at Borough Hospitals uncertain if they will be admitted.

 

Representative of East End Disabilities Associates, the current crisis intervention provider for Long Island gave us clear examples of how they addressed these and other issues. A parent of three sons with Autism, expressed passionately how important the Crisis Program on Long Island was to maintaining his family at home. The President of our Board of Directors discussed the trauma she and her family experienced when her son was place out of state, due in large part to such supports not being available to her family at that time.

 

Finally the Assistant Director of the NY City Regional Services for Developmental Disabilities noted that additional services are necessary but due diligence has to be taken to ensure such services are not currently funded and not provided as well as finding out the extent for the need of specific services.

 

 

 

The meeting ended with the following conclusions:

 

1.There is a need for Immediate Residential Crisis Services;

2.There is a need for a Mobile Crisis Intervention Team (MCIT) to assist in the support for individuals in crisis at local hospitals to determine need the for placement in the hospital, facilitate their return to their residence with a clear re-integration plan, or help them transition to a temporary placement in a Crisis Residence;

3.Due diligence be completed by the IRI to determine the need for specific crisis services.

 

To address the due diligence on our part IRI created two surveys, one for current providers of crisis services and the other for a sample of human services agencies under the auspices of OMRDD whose consumer base were in need of crisis services within the last year. Responses from those agencies that provide crisis services showed they do not have the capability to provide emergent overnight crisis supports. Rather, they can provide short term (three to five days) planned overnight respite to those families who can manage until the six to eight week scheduled time becomes available. Additionally agencies that provide in-home behavior modification services, in addition to overnight services, have a waiting list and do not address emergent situations.

 

Agencies similar to IRI were surveyed to determine how often consumers of their agency needed crisis services and whether or not they received those services. Bar none, agencies affirmed from their own experiences that mobile crisis intervention and overnight crisis supports were necessary. Further, they noted their limited use of existing crisis supports commenting on the difficulty with their respective scheduling requirements and inability to handle severe behavioral situations. (It should be noted that it was reported that some agencies with years of experience and depth have addressed crisis situations within their residences independent of OMRDD or others.)

 

Additional modifications in the proposal were made on the basis of feedback provided by representatives from the Queens BDSO to better suit the needs of its consumers as well as their families and the agency providing them their services. Specifically, a detailed list of concerns identified by the Deputy Director of Queens BDSO in his review of our proposal on September 17, 2004 was addressed and has been incorporated into a final version submitted for opts funding.

 

Summary and Conclusions:

 

Many challenges must be resolved in order to overcome the bureaucratic constraints, logistic issues and clinical complexity that are barriers to the delivery of effective crisis services for individuals with a dual diagnosis, particularly those who are experiencing what we have termed emergent behavioral crises. However, these problems can be solved if there is a mandate for change and if sufficient resources are available. We have described a Crisis Links network for responding to emergent behavioral crises in a comprehensive, coordinated, and timely manner, as well as the process we followed to obtained administrative and financial support for these crisis services. We have recently been notified that our OPTS proposal has been favorably reviewed at the state and local levels and we await word regarding which components will be funded. We have obtained funding through a grant from Family Support Services in Brooklyn to provide limited crisis services in the borough by a scaled-down Mobile Crisis Intervention Team that can provide approximately 25 hours of in-home support for up to 12 families experiencing an emergent behavioral crisis.

 

 

This funding enables us to:

 

1.Conduct an on-site, comprehensive eco-behavioral assessment to identify all factors contributing to the current crisis situation

2.Identify and prioritize the service needs of the individual in crisis and his/her social network (family members, providers of the day services, etc)

3.Provide immediate on-site behavioral support and skill training in the use of behavior management techniques to help caregivers manage the presenting problems more effectively.

4.Provide support to ensure that the interventions developed for each consumer are carried out as intended.

5.Establish a liaison with existing service providers to promote continuity of services and supports after the agreed upon crisis services are concluded.

 

We hope that documentation of outcomes accomplished by providing these services will serve as an incentive for the expansion of crisis services in Brooklyn to incorporate the additional elements of our proposed Crisis Links network and as a model for other agencies to use in addressing similar service needs of individuals with dual diagnoses.

 

References

 

 

Beasley, J. B. & DuPree, K. (2003). A systematic strategy to improve services to individuals with coexisting developmental disabilities and mental illness: National trends and the "Connecticut Blueprint." Mental Health Aspects of Developmental Disabilities, 6, 50-58.

 

Echterling, L. G., Presbury, J., & McKeep, J. E. (2005). Crisis intervention: Promoting resilience and resolution in troubled times. Upper Saddle River, NJ: Pearson Education Inc.

 

Hanson, R. H. & Wieseler, N. A. (2002). The challenges of providing behavioral support and crisis response services in the community. In R. H. Hanson, N. A. Wieseler, & K. C. Lakin (eds.), Crisis: Prevention and response in the community. Washington, DC: AAMR.

 

James, R. K. & Gillilad, B. E. (2001). Crisis intervention strategies and techniques (4th ed.). Pacific Grove, CA: Brooks/Cole.

 

Myer, R. A. & James, R. K. (2005). CD-ROM and workbook for crisis intervention. Belmont, CA: Thomson Brooks/Cole.

 

Pfadt, A. (1997). Models for services delivery. Habilitative Mental Healthcare Newsletter, 16, 26-28.

 

Random House Dictionary of the English Language (1973, p.344). New York: Random House.

 

 

Figure 1. The Overlap Model of an Emergent Behavioral Crisis (adopted from Myer and James, 2005)

 

 

911

New York Police Department

 

Psychiatric Emergency Room

(Private Hospital)

 

 

 

 

 

In-Home Parent Training

(Voluntary Agency A)

 

 

 

 

Emergency Overnight Respite Services, not a available for people who are experiencing emergent behavioral crises.

(Voluntary Agency B)

 

 

Crisis Services

 

(During Operating Hours)

(New York State Office of Developmental Disabilities

 

 

 

Lifenet

(24 HOUR 7 DAY PER WEEK HOTLINE) New York Department of Health

Psychiatric Inpatient Unit

NY State Office of Mental Health

 

 

Figure 2: An illustration of how crises services are currently fragmented

 

PANEL A

ENTRY INTO THE CRISIS LINKS NETWORK

Queens Developmental Disability Services Office

PANEL B

CRISIS LINKS RESPONSE OPTIONS

 

1.MCIT provides direct support to consumers as well as staff development (or instruction to family members) in the person's residential and/or day settings.

2.If admission to the Crisis Residence is clinically indicated, the MCIT will facilitate relocation to that facility from the person's current residential setting. The MCIT will facilitate the consumer making a smooth transition back to his/her previous day and residential settings through staff development and hands on support when requested.

3.At the request of the BDSO, the MCIT will help consumers make a smooth transition back to their homes from psychiatric in-patient units.

4.In those cases where the person cannot return home from the Crisis Residence, the MCIT will help the individual move to the Transitional Living Center or another identified long term/permanent residence subsequently to his/her new day residential program as part of a person -centered planning process.

 

Figure 3 Linkages between agencies within the Mental Health and Developmental Disabilities service systems established by the Crisis Links network.